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| Diagram of basic steps to a Western Blot result |
OK, this is an important issue; you should know what your medical tests mean. And always, always get copies of all blood work (or any other type of test for that matter)!
Some of these antibodies are made to attack specific proteins on the outer surface of the bacteria, others to attack the flagellum (the tail), etc. Each band in the Western Blot corresponds to a certain antibody that your body might make to fight the Lyme spirochetes.
I should also point out that which of these bands are important and specific for Lyme and which are not is still a bit controversial (depends on which researcher you talk to); the list below is a synthesis of a couple of different lists that I found online.
Western Blot Bands description (note: cross-reactive means it could indicate other spirochetes, specific means it ONLY happens when Lyme disease is present. Borrellia or Bb is Lyme disease.):
Western Blot Bands description (note: cross-reactive means it could indicate other spirochetes, specific means it ONLY happens when Lyme disease is present. Borrellia or Bb is Lyme disease.):
18 p18 flagellin fragment
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 outer surface protein D (OspD); Oms28; specific for Bb
30 OspA substrate binding protein; common in European and one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
The numbers are actually the molecular weights in kilo-Daltons (kDa). I've highlighted the antibodies in red which (many people agree) are very specific for Lyme disease.
IgM versus IgG is usually interpreted this way: if you have a positive IgM Western Blot, but negative IgG, it may mean that you just became infected fairly recently, because the IgM reaction to infection generally happens before the IgG. If you have a positive IgG it may mean an established, chronic infection.
OK, finally we need to talk about what POSITIVE means!
How does one decide what constitutes a positive Western Blot test? In some ways this seems like it would be a fairly easy question to answer, but when you realize that every person's body reacts differently to infection, and one immune system may not make the same antibodies that another immune system might make, then it becomes highly complicated.
In addition, to follow this discussion on all levels, you must realize that most doctors in the United States are NOT well-educated about Lyme disease. They generally believe that:
(a) The CDC and the Infectious Disease Society of America (IDSA) are the ultimate authorities and that anyone who disagrees with them is a crackpot.
(b) Lyme disease is rare, hard to catch and easy to cure (this is the IDSA official "line" and it is WRONG!!!!!!).
(c) Lyme disease should be treated with 2 - 4 weeks of doxycycline and THAT'S IT! (IDSA guidelines again. This makes NO sense...there are many illnesses out there that have to be treated very aggressively for months and months.)
Please understand that there is a political and economic battle being waged in this country with the health insurance companies and the IDSA on one side and many, many Lyme patients who are desperately ill on the other side.
If you don't believe me, you need to watch Under Our Skin ASAP!!
OK, here are three sets of Western Blot criteria for determining whether or not someone has Lyme disease; let's compare them:
1. The current CDC criteria (used by the IDSA and health insurance companies) for a positive Western Blot are as follows:
(a) For IgM, 2 of the following three bands have to be positive: OspC
(22-25), 39 and 41.
(b) For IgG, 5 of the following ten bands have to be positive: 18, OspC
(22-25), 28, 30, 39, 41, 45, 58, 66 and 93.
I will not go into the ins and outs of how they came up with these criteria. You can look at the CDC website for that. Suffice it to say that when the CDC criteria were first created, they were not recommended for diagnostic purposes. In fact, there used to be a statement on the CDC website that said so. I think that statement has now been taken down in an attempt to appease the IDSA.
2. The criteria used by IGeneX, one of the top Lyme laboratories in the country: IGeneX considers a Western Blot (IgM or IgG) to be positive if just two or more of the following bands are positive: OspC (23-25), 31, 34, 39, 41, and 83-93.
3. Possible future criteria in China: I recently read an article about Lyme disease testing in China, where Lyme is spreading rapidly through the country. The researchers quoted by the article recommended considering a Western Blot positive if just ONE single Lyme-specific band was positive.
So the IDSA and the health insurance companies are in cahoots, but ILADS (the International Lyme and Associated Diseases Society) is opposed to their anti-patient agenda and their highly restrictive and ridiculous diagnostic criteria for Lyme disease. Our heroes, the Lyme Literate doctors (aka LLMDs in the online Lyme communities) are generally member of ILADS and believe that the using the CDC WB criteria for diagnosis of Lyme disease is incorrect.
So what's so terrible about the CDC WB criteria anyway? For one thing they don't mention some of the bands which are the most highly specific for Lyme disease, namely bands 31 and 34, aka OspA and OspB. Your body can only produce these antibodies if you have been exposed to Lyme spirochetes!
The main reason these were left out is that several of the doctors who originally decided on the criteria were involved in an effort (at that time) to create a Lyme vaccine, and those two bands were part of the vaccine, so anyone who had been vaccinated against Lyme would test positive for 31 and 34 even if they did not have Lyme. So they deleted those two bands from the list.
However, the Lyme vaccine is no longer being used because it caused terrible autoimmune reactions in a number of people who received it. But (oops!!) the CDC forgot to put those two bands back into the criteria after they stopped using the vaccine!
And requiring FIVE bands for an IgG to be positive? How do you know that everyone will produce a minimum of 5 different IgG antibodies? And why include bands 45, 58, and 66, which are not specific for Lyme disease? Why not include bands that are SPECIFIC for Lyme??? Clearly these criteria are too restrictive.
It has been said that the current CDC testing misses at least half of those who truly have Lyme disease.
As to the IGeneX criteria, these make a lot more sense, as the only band in their set that is NOT Lyme-specific is band 41. Band 41 is usually the first band to show up for Lyme but also is frequently positive for people with other spirochetal infections such as syphilis and certain dental infections.
However, in my humble opinion, the proposed Chinese criteria make the most sense, since your body should not be able to produce even one single antibody to a Lyme spirochete unless you have been exposed to Lyme!
In the opinion of many LLMDs, IGeneX is one of the best places to get a Western Blot done, as their testing is more sensitive and they also report the "indeterminate" results, which means that there was some sort of reaction there, but not a strong enough response to be considered positive. The indeterminate results can be considered clinically significant if a doctor wishes to include those.
My own IGeneX Western Blots were both positive by IGeneX criteria but negative by CDC criteria.
The positive bands from both my first and second IgM tests were 18, 30, 31, 34, and 41. Bands 23-25 and 39 were reported as indeterminate in the first IgM WB but only band 39 showed up as indeterminate in the second IgM WB.
The positive bands from my first IgG WB were 30, 31, 34, 41, and 58, and in the second IgG WB bands 31, 34, 41, and 58 were positive. In the first IgG WB, band 23-25 was indeterminate, and in the second band 39 was indeterminate.
Attention, all doctors employed by (health insurance company which shall remain nameless) who have denied my various insurance claims, and who use the CDC criteria to tell me that I don't have Lyme disease: note that many of the positive and indeterminate bands in my IgM and IgG WB results are VERY VERY specific for Lyme disease: 23-25, 30, 31, 34, and 39.
THERE IS NO WAY IN H-E-DOUBLE-HOCKEY-STICKS THAT MY IMMUNE SYSTEM IS "RANDOMLY" PRODUCING THESE PUPPIES!!!!!
Hi JoAnn -
ReplyDeleteLyme sure is a tricky thing! I just got Igenez testing done after about 15 years of mysterious illness including swelling around my heart, joint pain, nuerological symptoms .... Igenex says i am 80% negative and need to have the urine test done (my results were IGM 41 possitive and 83-93 IND - IGG 41 IND) I was on the line for bartonella. I have no clue what to do this is so frustrating. I did write to a LLMD in my area and she said that it is HIGHLY suspicious for lyme - but then if band 41 is not specific for lyme I don't understand her reasoning. Any clues would be great! I also blog more on the general topic of chronic pain www.differenthappyali.blogspot.com
Hi Ali, Band 41 just means that your body is making antibodies against a protein that's found in the flagella of ALL spirochetes: Lyme, syphilis, dental spirochetes, etc.
ReplyDeleteHowever, Band 83-93 is very very specific for Lyme! IND means that there are Band 83-93 antibodies present, just not enough of them for a solid positive. This could be because most of your antibodies are bound up in complexes attacking the Lyme bacteria, so are not detectable as they are not freely swimming in your blood stream.
That fact, combined with your symptoms, are probably the reason the LLMD says that she suspects you have Lyme.
I do hope you can get some treatment that gives you relief very soon!! Good luck!
Very good research. Using antibodies is probably not the best thing. People who have symptoms and "Feel" flu like for months on end need to have tissue samples taken and look for the bug itself.
ReplyDeleteRecently (2009) of of the hiding areas is in the lymph nodes. It may seem dramatic but lymph nodes are routinely biopsied for lymphomas. Maybe they should be for lyme. In the end chronic inflammation (low grade) will kill you slowly creating a host of other issues that insurance will pay for in the end. No free lunch with lyme, its pay me now or pay me later.
The Asians might very well be ahead of the game in terms of thinking one positive strand clearly indicates infection. I had 4 Western Blot tests and later an Igenex test all the test came back negative. Although Igenex test showed band 41 as positive. Confusing? When I first got ill I had my holistic dentist extract both root canals and a wisdom tooth, two of the extraction sites were heavily infected all way into the jaw bone, the dentist injected the sites and the jaw bone with Ozone which kills everything, but not you! My dermatologist had a rash biopsied on the back of my neck and sent to the the big medical school here and it came back negative. My research has shown that band 41 means either syphillis or dental infection by Treponema Denticola a dental spirochete . More interesting is that teeth infections may mimic the symptoms of Lymes. So this can be very confusing. I believe Clarithromycin therapy kills this sort of infections but you need to get rid of the biofilm first to get at it.
DeleteI totally agree....testing for antibodies is really stupid, because so many tick-borne illnesses actually SUPPRESS the immune system so you may not make the antibodies in the first place.
ReplyDeleteIn addition, Lyme is frequently misdiagnosed as an autoimmune disease, and what is the first thing a doctor does when he/she diagnoses you with an autoimmune disease?? Naturally he/she will prescribe an immunosuppressant such as prednisone, Imuran, etc! Which will prevent your immune system from forming Lyme antibodies!!
Biopsying lymph nodes and testing for Lyme DNA may be the perfect solution...great idea!
Hi, I went to my doctor in March for joint pain, and terrible burning in my foot(nerve pain), not to mention many other anoying symptoms. He ran many tests and of course I had two positive IgM bands(23 and 39). He treated me with 30 days Doxicycline, than retested after two weeks. The IgG was negative and the IgM positive(bands 23 and 39). This blood was sent to a different lab than the first work up in March. Doctor said the test results were strange (the burning in my foot stopped while I was on the antibiotics). He sent me to an Infectious Disease Doctor, who took more blood and sent it to another lab which he said was better than the other labs used. The results were no IgG bands present but IgM bands (39,58 and 66). He said " nothing worth treating here". I must add that 5 years ago I tested positive for Lyme and was treated for 30 days (can't remember which antibiotic), when retested I was told it was gone. It is now August and the burning is starting to come back. I am frustrated and alittle angry, and I am not sure what to make of the blood test results. Should the IgG show some bands if I have been treated? Could I still have it? Is it possible that I never had it and the results are false positive from three different labs? PLEASE let me know what you think.
ReplyDeleteConfused in NY
ive read somewhere once lyme hacks you immune cells the IGG will not show up becuase its no longer MAKING antibodies to that strand. or they don't responde to normal testing. i mix up igG and iGM but one only shows if you have active antibodies. and some disease kill that off. (aids anyone?) so does lyme. if i find the site that states i willpost
DeleteHas anyone hadthis:
DeleteLyme IgG/IgM Ab 1.06 High index 0.00 − 0.90 01
Negative <0.91
Equivocal 0.91 − 1.09
Positive >1.09
and
IgG P18 Ab. Present (Abnormal)
\\\\\\
strep rapid test> faint positive
have arthritius like soreness and stiffness that loves to seem to shift around to different areas each day. increased (GREATLY) tiredness. cold like nasal symptoms.
was assigned amoxicilin, which only helped for a day and symptoms returend.
heat helps. in fact getting in a warm/hot car is very pleasureble with the current symptom set.
i feel like i am going crazy. cuz each morning i wake up and a diffrent part of me is sore. and the prior part may not ache at all!
Hi I have IgG negative and IgM positive p41 and ospC. I have been told I have Borrelia relapsing fever. Have been ill for years clinical diagnosis of Lyme.
DeleteDear Confused....yes, you absolutely could still have Lyme! I am not a doctor of medicine, but you have been tested multiple times by various labs and continue to produce certain antibodies that are very specific to Lyme such as IgM 23 and 39.
ReplyDeleteThat said, antibody activity does not really say anything about disease activity! However, your multiple symptoms AND antibodies indicate that you do likely have Lyme disease still. I have had Lyme for years....I know some people who have had it for decades. I've been on antibiotics since January 2010, and am still on them (Biaxin and Suprax right now).
Have you ever been tested for co-infections such as Babesiosis or Bartonella? To find out what's really going on you need to see a Lyme-Literate doctor (LLMD). Go to www.turnthecorner.org and they should be able to help you find a LLMD in your area.
Good luck!
Hi JoAnn,
ReplyDeleteYes, I have been checked for coinfections, those tests were all negative. Thanks for the www.turnthecorner.org info, I have been searching for a way to find a Lyme literate doctor. After I pasted my comment last night I was reading more of your postings and I found the Erythromelalgia info VERY interesting. I have a similar problem with my hands, my finger tips start to get hot and very red, then they swell until they split open. I have had this problem for many, many years. I don't have it all the time, but it seems to happen when I am feeling really,really run down and the joint pain seems to be everywhere. Thanks again!!!
Confused in NY
You're welcome! Erythromelalgia has been a big problem for me at times; I have had to learn what my triggers are, such as drinking a glass of wine or putting blankets over my feet in bed (heat or pressure are big triggers for me). Even a hot shower can cause EM to flare up...from the description of what happens to your fingers, you too may have EM. Mine is intermittent as well. You might want to see a dermatologist about this, and ask if it could be erythromelalgia, or ask your LLMD when you find one! My LLMD told me that he has seen EM occurring in a few of his Lyme patients, so it does happen in association with Lyme. I hope you find a good doctor very soon and get some relief!
ReplyDeleteHey Joanne - thanks
ReplyDeleteI got a second opinion from an infectious disease doctor and he said despite the elisa was pos and i had 4 out of 5 bands on the western blot he did not feel it was lyme ?
Anonymous,
ReplyDeleteOf COURSE he said that! Have you already read my entire post (above)? I know it's long but you should probably read that, plus some of my other rantings and ravings about the IDSA (Infectious Disease Society of America) on this site.
But I think what might really help you is to watch the documentary Under Our Skin. It will make very clear why you will NEVER get proper diagnosis or treatment for Lyme disease from an infectious disease doctor (unless they happen to also be affiliated with ILADS, the International Lyme and Associated Diseases Society).
The IDSA currently espouses these ridiculous criteria for diagnosing Lyme -- criteria which make it nearly impossible to be diagnosed -- and an even-more-ridiculous protocol for treating it. What is truly outrageous is that the doctors who came up with the diagnostic criteria and treatment protocol KNOW they are wrong!
You have to realize that a lot of these guys are funded by health insurance companies and others who profit by making it EXTREMELY difficult to diagnose anyone with Lyme, and then for anyone who DOES (by some miracle) get diagnosed, they treat them for 10 - 30 days with antibiotics and then tell the patient, "OK, you're cured! If you still have symptoms, you're either (a) imagining them or (b) you have Post-Lyme syndrome which cannot be treated. You'll just have to learn to live your pain.... and don't let the door hit you on the way out!"
Please, please go to www.turnthecorner.org and get some help finding a Lyme-Literate physician (LLMD) in your area. LLMDs are almost NEVER infectious disease doctors, and are rarely members of the IDSA. Any LLMD worth his/her salt should be affiliated with ILADS.
LLMDs can be hard to find in some states because of legal prosecution against doctors who treat Lyme patients for longer than 30 days with antibiotics. One of the only Lyme pediatricians in the country -- a wonderful man in his 80s, Dr. Jones -- is fighting for his professional life as I type this.
I wish you the best of luck!
I tested positive on band 23 of the western blot.the others showed non-reactive on negative. My legs and feet are hurting and burning and I'm tired and headache but my dr. said I needed to show 2 bands positive according to the test. HELP I don't know what to do.
ReplyDeletec.
Anonymous, please try to find an LLMD in your area! Try contacting ILADS on their website (http://www.ilads.org/) and/or Turn The Corner (www.turnthecorner.org) for help with finding a REAL Lyme doctor.
ReplyDeleteI assume that your doctor is NOT Lyme-Literate, because band 23 is very very specific for Lyme, and with your symptoms the doctor should be able to make a clinical diagnosis of Lyme disease instead of insisting on two positive bands in your bloodwork. Was your result IgM or IgG?
Your antibodies may be tied up in complexes fighting the Lyme bacteria, which makes it hard to detect them in the blood. Also, Lyme and Bartonella (a common coinfection) attack the immune system, and can suppress antibody production. A Lyme doctor would understand these issues.
Best of luck!!
IGM. DO U KNOW OF ANY OTHER DISEASE THAT THAT #23 WOULD OR COULD ALSO BE? THANKS FOR ANSWERING ME.
ReplyDeleteC
I found the following list of possible Western Blot cross-reactivities of various bands with other pathogens at LymeNet Europe:
ReplyDeleteB. burgdorferi cross-reactions:
kDa
18: C. pneumonia
23-25: B. Hermsi, leptospirosis (band 25), Yersina, C. pneumonia (band 25)
35: Yersina, C. pneumonia
39: B. Hermsi
41: S. pallidum, L. interrogans, Yesirna, potentially all spirochetes
60: S. pallidum, E. coli, Bartonella, Staphylococcus, M tuberculosis, E. coli
70: HGE
Proteins that could be close enough possibly to get confused, if test or interpretation is sloppy:
kDa
18: S. pallidum (17 kDa)
30: C. pneumonia (29 kDa)
31: L. interrogans (32 kDa)
34: B. Hermsi (35 kDa)
41: C. pneumonia (40 kDa)
45: T. pallidum (47 kDa),
66: M. tuberculosis, E. coli (65 kDa)
So apparently B. hermsii, leptospirosis, Yersina and C. pneumoniae can cause a false positive for either band 23 and/or band 25. Usually bands 23-25 are listed together because they are so close together...difficult to separate.
Borellia hermsii (B. hermsii) is a tick-borne relapsing fever caused by a spirochete related to Lyme. Leptospirosis is another spirochetal infection usually contracted from contaminated water. Yersina is an enterobacterium.... Yersina pestis is the bacterium that causes bubonic plague! Chlamydophila pneumoniae is a major cause of pneumonia.
You might want to read up on the symptoms of these infections to see if any of them fit, but it would be better to contact a LLMD who would be able to help you determine whether or not you have Lyme disease.
What do you think. My lyme test was "indeterminate" w/ the West blot kDa41 being 39.41 and bands 18,23,28,30,39,41,45,58,63 were non reactive.
ReplyDeleteThey are sending me to rheumatology, but I'm unsure if I should purse Lyme ..or ???
Hi, will you please write to me and let me know the course of action you took? I have IGM p41 as + and because of the joint pain they are sending me to a rheumatologist who is asking me to take prednisione.Please write to soniaroy78@rediffmail.com
DeleteJewell, do you mean that you had "IND" on bands 39 and 41? Which band or bands were indeterminate?
ReplyDelete41 just means you have a spirochetal infection. There are lots of spirochetes, including periodontal spirochetes, which infect your gums. But did you have an "IND" on any of the other bands?
And what are your symptoms?
I haven't seen the labs yet myself. What the receptionist told me was KDa 41 was 39.41/ She also said the following were nonreactive 18,23,28,30,39,41,45,58,63 were nonreactive.
ReplyDeleteSymtoms for 6 weeks: extreme fatigue, intermitten joint pain (fingers, toes, elbows), skin tingling, skin pain, (started w/ head, arms and legs and migrated to all over), wrong use of words. I was dx'ed w/ CFS in 02, but after about 3 years I was virtually symptom free (my face would burn and I'd get some tingling under extreme stress). About 3 months ago, I went from "hey I feel great today" to "I can't keep my eyes open" in under 4 minutes. I'd had some joint pain the 2 weeks before. Now I've had about 4 functional days in the last 6 weeks. They are now sending me to rheumatology.
Thanks
Well, your symptoms certainly fall within the Lyme disease range!!
ReplyDeleteBut those WB results don't make sense to me, usually the results are -, IND, +, ++, +++, etc. Not numbers...?
Also there are two types of Western Blot tests: IgG and IgM. Did she say if the results were indeterminate for IgG or IgM? Sounds like that receptionist isn't familiar with reading Western Blots!!
Can you get a copy of the results?
My advice to you would be to contact both ILADS (www.ilads.org) and Turn the Corner (www.turnthecorner.org) IMMEDIATELY and ask for help finding a Lyme-Literate physician (LLMD) in your area. A rheumatologist will NOT have the expertise to figure out whether you have Lyme or not, you need a Lyme doctor for that.
That said, a rheumy can come in handy if Lyme has triggered an autoimmune disease in you (I hope not, of course!). I have Lyme plus SIX autoimmune diseases! Women are far more likely than men to develop autoimmune diseases after contracting Lyme.
Good luck! Try to get a copy of the results and please feel free to ask more questions!
Although I have to add that my husband Paul has developed two autoimmune diseases (celiac disease and psoriasis) which was why I suspected he had Lyme in the first place. It took a while, but eventually I talked him into being tested for Lyme. Sure enough, he has it (just diagnosed a few months ago)!
ReplyDeletehello- I've had a year of muscle weakness(arms and legs) and twitching all over(esp. limbs), neck and jaw stiffness, fluctuating swallowing problems, feet hurting (esp. heels), aches and pains in muscles(arms, legs, back, neck). I've been going to Neuros who are dismissive, when I know something is wrong, after numerous "neuro tests", and blood labs were normal, they told me I should seek counseling. I don't agree with them, I feel like they are trying to make lite of my symptoms when basic/preliminary neuro testing didn't show anything. And they ignore the fact that I keep telling them of my TWITCHING and LIMB WEAKNESS (it's so hard to climb stairs now, my knees and hips are feeling the stress because the muscles are not supporting my legs normally). Anyway, I'm looking for insight and I wanted to share my IGNX results to see what you thought.
ReplyDeleteThe Igenx WB results are mixed, I'm wondering if I should pursue lyme literate dr, but the neuro wants to send me to a infections disease dr.
IgM WB- 41 kDa- IND
IgG WB- 39 kDa- IND
IgG WB- 41 kDA- +++
IgG WB- 45 kDa- +
Multiplex B. Burgdorferi Serum:
Genomic- negative
Plasmid- positive
Confirmed by Southern Dot Blot
"Sample is considered positive if either genomic or plasmid is positive."
Multiplex B. Burgdorferi Whole Blood- Negative
Other band were negative...
Any advice would be appreciated, I feel like this is hell, I've been suffering so long, with no answers and so much money spent on tests, I'm so scared and alone :( Help...
Hello, I am writing because I have been having many lyme symptoms since May 2010. Severe muscle, bone and nerve pain, to the point where I can barely walk. Major jaw pain and clicking, neck pain and stiffness that is now causing me to have headaches upon waking. Burning, nerve like pain in all extremities that is so bad it keeps me from sleeping. Irregular shooting pains all over my body. Muscle twitching and cramping, and the list goes on and on. I was a perfectly healthy 35 year old until May 2010, and now I feel like I am dying. My symptoms go on and on. I had originally gone to an ortho Dr, who then sent me to a rheumatologist. I have since changed rheumatologists. They all think I have RA, but all of those tests have come up negative. I also have pitting edema that occurs mainly in my ankles. I asked my Dr. to have me tested for lyme because my dog also showed similar symptoms around the same time as me. My test just came back, and the only band that came up as present was the IgM23. I am very confused, because every site that I have gone on states that this is only reactive to BB. Yet the CDC considers it negative. Please help
ReplyDeleteThis is exactly what is goign on with me... Months of different doctors, gettign worse... Horrible headaches ex for over 10 months( negative Brain MRIs), extreme pain and cracking in joints, Rheumatologist says that my exam is normall...??? How is it possible? Twitching eye lids, eye inflamation, poor sleep, faded rashes on my skin... My Primaty care still insist that I do nto have Lyme...
DeleteHello, I am 35 years old and started experiencing multiple lyme symptoms May of 2010. Prior to that date I was extremely healthy and active. I am now almost completely debilitated with joint, muscle and nerve pain as well as many other symptoms. I have severe muscle and nerve pains throughout my body, extreme in my legs. I also have severe jaw and neck pain which causes me to headaches upon waking. I get muscle twitching and spasms, and alot of clicking in my joints. My memory has become very bad, and being that I am an RN this is really making my job almost unbearable. I also get pitting edema in my ankles often, among other symptoms. I originally went to an ortho DR, who then sent me to a rheumatologist. I have since gone to a new rheumatologist. They all say I have RA, although all of my tests have come up negative. I had my rheumatologist order Lyme tests, but the only band that was present was the IgM23. I am very confused because from all of the sites I have been reading this is very specific to BB, yet the CDC claims my tests to be negative. Please help!
ReplyDeleteNikerik, so sorry to hear of your pain and suffering. Yes, your symptoms do sound very much like Lyme, in fact, very much like the symptoms that I dealt with before my diagnosis. Neck pain and neck "clicks" are very Lyme-y. It is particularly telling that your dog was sick as well.
ReplyDeleteI should let you know that LymeNet Europe posted the following cross-reactivities for Bands 23-25:
B. hermsii, leptospirosis, Yersina and C. pneumoniae can cause a false positive for either band 23 and/or band 25.
Usually bands 23-25 are listed together because they are so close together...difficult to separate.
Borellia hermsii (B. hermsii) is a tick-borne relapsing fever caused by a spirochete related to Lyme. Leptospirosis is another spirochetal infection usually contracted from contaminated water. Yersina is an enterobacterium.... Yersina pestis is the bacterium that causes bubonic plague! Chlamydophila pneumoniae is a major cause of pneumonia.
You might want to read up on the symptoms of these infections to see if any of them fit, but it would be MUCH better to contact a Lyme-Literate MD (LLMD) who would be able to help you determine whether or not you have Lyme disease.
You do have classic Lyme symptoms, but I'm not a doctor. Please contact turnthecorner.org for help finding a LLMD close to you! If you are in a state that has NO LLMDs (there are many), be prepared to travel to a doctor. Good luck to you!!
Hi JoAnn-
ReplyDeleteI am reposting my story, as I hoped to hear back from you before Nikerik.
I've been dealing with this for 1 year now, and no light in site. I have a LLMD appt in 2 weeks- any suggestions?
Here is my story:
hello- I've had a year of muscle weakness(arms and legs) and twitching all over(esp. limbs), neck and jaw stiffness, fluctuating swallowing problems, feet hurting (esp. heels), aches and pains in muscles(arms, legs, back, neck). I've been going to Neuros who are dismissive, when I know something is wrong, after numerous "neuro tests", and blood labs were normal, they told me I should seek counseling. I don't agree with them, I feel like they are trying to make lite of my symptoms when basic/preliminary neuro testing didn't show anything. And they ignore the fact that I keep telling them of my TWITCHING and LIMB WEAKNESS (it's so hard to climb stairs now, my knees and hips are feeling the stress because the muscles are not supporting my legs normally). Anyway, I'm looking for insight and I wanted to share my IGNX results to see what you thought.
The Igenx WB results are mixed, I'm wondering if I should pursue lyme literate dr, but the neuro wants to send me to a infections disease dr.
IgM WB- 41 kDa- IND
IgG WB- 39 kDa- IND
IgG WB- 41 kDA- +++
IgG WB- 45 kDa- +
Multiplex B. Burgdorferi Serum:
Genomic- negative
Plasmid- positive
Confirmed by Southern Dot Blot
"Sample is considered positive if either genomic or plasmid is positive."
Multiplex B. Burgdorferi Whole Blood- Negative
Other band were negative...
Any advice would be appreciated, I feel like this is hell, I've been suffering so long, with no answers and so much money spent on tests, I'm so scared and alone :( Help...
Anonymous, I'm so sorry I missed your comment/questions! My brain and vision don't work very well sometimes... :(
ReplyDeleteI'm also sorry for what you've been going through; I relate very well unfortunately. My PCP of more than 5 years decided I was a hypochondriac after I developed similar symptoms but she couldn't diagnose me.
In any case, you've probably read enough of my post here and my answers to questions from others like you to know that:
1. Lyme is a CLINICAL diagnosis! Blood tests are just a small part of the whole picture that a doctor should consider, especially since the current tests are KNOWN to be very inadequate.
2. I'm so glad you have an appointment already scheduled with a LLMD!! If you hadn't, I would have recommended that you find a LLMD immediately and trust that expert to diagnose you. Do NOT go to an infectious disease doc, unless they are affiliated with ILADS!!
You are definitely doing the right things! You're asking questions, reading and educating yourself, and you've found a LLMD and made an appointment.
Before your appointment, try to read up as much as possible on treatments for Lyme and co-infections. Visit Lyme forums. Make a list of ALL of your symptoms, since you may have co-infections too. Make a list of all of your questions... don't trust your memory for this. If you have brain fog and memory loss as I have, it might be prudent to tape-record your visits with the doctor, so that you can replay it at home if you can't remember all of his/her advice.
Good luck to you!!
I have been having all over myalgias for two years. I also have trouble sleeping, but I am always tired. I have 2 dogs and live in MA next to a nature preserve. My Internist ordered a "bloodtest" for Lyme in May 2011 and it came back negative. I have recently found a Naturapathic Physician that specializes in Lyme. She sent my blood to IGenx for a WB and it basically came back negative but IgM bands 31, 34, 41, 83-93 came back indeterminate. My CD57 was 264. Based on my symtoms she recommends treatment, but wouldn't my CD57 be lower if I had Chronic Lyme? How many antibiotics should I be on and for how long? Thanks Lynn
ReplyDeleteLynn, I agree with your LLND that your pain/fatigue/sleep issues may still be Lyme-related, even with your negative WB and relatively high CD57.
ReplyDeleteEveryone's body reacts a bit differently to infection; some people have such strong immune systems they can actually recover from Lyme disease the way others recover from a cold. It may be that your immune system is still strong, even with the symptoms you've listed. But antibiotics may be required for a complete recovery.
BTW, which lab did your doctor use to determine CD57?
I ask because I found a great post online about the CD57 test (http://www.morgellons-disease-research.com/Morgellons-Message-Board/lyme-disease/3855-everything-you-wanted-know-about-cd57-test-ginger-savely.html) and learned that:
1. Your blood sample needs to be drawn into an EDTA tube (lavender top) on Monday through Thursday and sent immediately to either LabCorp in Burlington, NC, or Clinical Pathology Laboratories (CPL) in Austin, TX. LabCorp and CPL are the only two labs that perform this test properly. Quest does NOT.
2. CD57 markers can be expressed on more than one type of cell, including T-cells, so it is important to distinguish between CD57+ T-cells and CD57+ NK cells. Clinicians need to be aware that many testing laboratories claiming to perform the CD57 test are actually looking at CD57+ T-cells rather than CD57+ NK cells, which are the cells of interest in chronic Lyme disease.
Since your doctor is a LLND, she probably knows all of this but it's worth verifying anyway.
In any case, doxycycline is usually the first line of defense, but since you've had symptoms for two years, you may need several months of antibiotics, possibly more than a year.
Typically, with chronic Lyme, LLMDs rotate through more than one type of antibiotic, beginning with doxy. Later you may be on zithromax, clindamycin, Biaxin, IV Rocephin, Tindamax, or whatever.
If you have a co-infection such as Babesia, you might also have to take medications like Malarone or Mepron. I have been on all of the above at one time or another and am now back on doxycycline.
Do you live in a state that allows naturopaths to write prescriptions? If not, you will need a LLMD as well, or some doctor who work with your LLND to prescribe antibiotics.
I wish you luck as you begin treatment and hope that you feel better very soon!
After having symptoms of chronic lyme since March, my dr decided to go ahead and treat since my test wasn't negative (but not high enough to be positive)...after 1 week on the antibiotic, I had a flare (ok, dh was restructured out of his job, and my mom was in the hospital!)...is that normal. He only put me on 3 weeks of oxy because he was nervous about the side effects and since my number weren't clearly positive. Obviously, we are now out of insurance til dh finds his new job....what do you think? I actually wonder if my first flare wan't in 02 when I was dx'ed w/ CFS.....
ReplyDeleteThanks
Jewell, YES!! It is TOTALLY normal to have a "flare" after about a week of antibiotics! In fact, your flare... especially the timing of it... convinces me that you very likely do have Lyme disease! If you get to continue with antibiotics (or any effective treatment) at some point, you will notice these flares happening periodically, but they should lessen as the number of Lyme bacteria in your system decreases.
ReplyDeleteIn Lyme parlance, this flare is called a herx (short for Jarisch-Herxheimer Reaction). It happens when the Lyme bacteria have a big die-off and release toxins into your system. People tend to experience herxes on a regular basis at first; my understanding is that the timing has something to do with the length of the bacterial life cycle and the phase at which they are most vulnerable to antibiotics.
There is another Lyme blog with a good post on herxing.....check it out and see if the symptoms sound familiar!
Lyme can trigger fibromyalgia and/or CFS, so it's very possible that you contracted Lyme before your dx of CFS.
Best of luck to you and your DH!
JoAnn, My CD57 was sent to LabCorp. I am starting on Biaxin 500mg twice daily plus Plaquenil 200mg twice daily until symptoms resolve, then 4 weeks longer. What did I sign myself up for? I have warned DH of the side effects. I am going to attempt this while working full time, taking care of two children & a 91 year father. Wish me luck & pray that I don't get any of the serious side effects from the Plaquenil. Lynn
ReplyDeleteThanks for your help. I didn't see the response to my post until I came back to ask again! :) I had a some really great, productive days, and I'm getting slammed again. Guess it's time to slow down. :( But it makes sense. I've been on antibiotics almost 3 weeks and have been perscribed 2 more weeks worth...hope that does it!
ReplyDeleteLynn, yes, I will be praying for you! Good luck!
ReplyDeleteAnd Jewell, good luck to you too.... but if you've been sick since 2002, it will probably take MUCH longer than 5 weeks on antibiotics to get you significantly better!
ReplyDeleteI've now been on antibiotics since Jan 2010, and I'm a little better in some areas, but worse in others. No end in sight for me.... :(
I know of people who were on abx for more than 3 years before they even started to get better; I hope that's not the case for you!
Thanks for the information. My doctor was nervous about 6 weeks, I doubt I could get him to do 3 years. As for changing dr.s on this, he is good to refill my perscription on my word since my dh was restructured out of his long term job recently and we are out of insurance for now
ReplyDeleteI understand....I just moved from CA to ID and was looking for a new primary care physician. The first doctor I saw called me a few days after my visit and said that he didn't want me as a patient because I was on long-term antibiotics and he didn't agree with the protocol.
ReplyDeletePlease understand, he wouldn't have even been the doctor prescribing them! I have a completely different doctor (LLMD in CA) who is treating me for Lyme. So he didn't have anything to do with my Lyme treatment! Unbelievable!
You should watch the documentary, Under Our Skin, which is now free online at this link....you'll understand the big controversy in the medical community a little better after you see that film.
Anyway, best of luck to you!
It's Lynn again,
ReplyDeleteWhat about using long term ATB and super bugs or those ATB not working for another infection in the future because you've been on them so long?
Lynn, there are always risks with long-term abx, and that's one reason that there's been medical controversy over treating chronic Lyme disease that way.
ReplyDeleteThat said, there are PLENTY of illnesses for which doctors are willing to prescribe long-term antibiotics....even ACNE! I know of someone whose daughter was on antibiotics for more than 6 months because of a severe case of pimples!
At this point in my life, I fear the damage that the Lyme bacteria can cause more than I fear long term abx. There have even been a few positive side effects....for example, I haven't had any UTIs at all since beginning the abx treatment, which is great!
I understand your concerns, but there are few options when you have chronic Lyme.
Take care....praying for peace and healing for both of us!
JoAnn, thank you for your article. I have a question for you that I hope you can help with. Band 41 appears to be the "mystery" band, and I tested positive for only this band.
ReplyDeleteWhile I'm not on a Lyme disease crusade, it is my thought that testing positive for this band indicates there is at least one type of harmful bacteria in my body. I've been suffering for approximately 10 years with my only late stage symptom that I can think of is sleep disturbances in the range of 40 - 50 times per night, every night consistently without relief. I don't have sleep apnea.
I don't care if it is either Lyme or another bacteria causing my sleeplessness, but my questions to you are:
Is band 41 alone significant enough to receive some type of treatment or this band considered a non-significant result?
Would treatment be the same for A, B, C, D, & E different types of bacteria (antibiotics I'm assuming) or are additional tests required to figure which exact bacteria is present and then offer a specific treatment for the specific bacteria? Or will just blasting the immune system with 1 type of antibiotic eradicate them all?
Thank you!!
Band 41 indicates the presence of a spirochete in your system. Unfortunately there are many common types of spirochetes that can cause a positive Band 41 in a Western Blot, mainly dental spirochetes. Depending on your LLMD, Band 41 plus other typical Lyme symptoms could indicate a clinical diagnosis of Lyme and a need for antibiotics. Sleep disturbance is definitely seen in Lyme disease patients. But whether or not you could be prescribed antibiotics is entirely up to your Lyme doctor. Good luck to you! Find a good LLMD!
ReplyDeleteJoAnn would recommend at least trying antibiotics for a few weeks to see if there would be any improvement in my sleep disturbances? In my opinion, the possible benefit of curing my insomnia far outweighs the risk of antibiotics for a few weeks. I figure it couldn't hurt to try given that I tested positive on band 41, ya know?
ReplyDeleteThanks!
Well, not being a physician myself, I can't recommend any type of treatment for you. And I do have to warn you that if you do have late-stage Lyme disease, a few weeks of antibiotics may not make any difference at all. I was on antibiotics (sometimes two or three of them at a time) for nearly three years before I noticed a real change. The main change is the diminishing of my neurological symptoms, although I still have vertigo and double vision my memory is much improved and I no longer have the muscle spasms I did at the beginning of my treatment.
ReplyDeleteI understand your desire to try antibiotics to see if they would help, but late stage Lyme is very intractable and you need to talk this over with a good Lyme doctor.
Best Wishes to you... and Happy Thanksgiving!
Thank you for your input. Happy Thanksgiving to you too!
ReplyDeleteJoAnn, I had IgG band 41 retested a few days ago and it came back negative. Are false negative's even possible?
ReplyDeleteWhich test result would be more accurate: the negative or the positive IgG band 41?
Do I try to retest for a 3rd time?
Unfortunately false negatives occur all the time. They are testing for antibodies, and there are many reasons why the test might fail to detect antibodies. (1) You might have a compromised immune system and are not making enough of them. (2) Your antibodies might be doing what they are supposed to do, which is to attack the Lyme bacteria, so they are attached to the spirochetes in "complexes" and therefore are not detectable. (3) You may have both Lyme and Bartonella, and Bartonella has reprogrammed your immune system and turned off certain antibodies, including those that attack the Lyme bacteria.
ReplyDeleteThese are just some of the possibilities. I think that if you take your test results and list of symptoms to a good Lyme-Literate doctor, he/she will be able to make the correct diagnosis. If you decide to get tested again, I would use Advanced Lab: http://www.advanced-lab.com/faq.php They actually do a culture for the live bacteria, instead of testing for antibodies. Good luck with everything!
Thank you JoAnn, I will be seeing an infectious disease doctor this week. Your information is helping me prepare for the visit. I have one last question.
ReplyDeleteI just noticed on the test that I tested positive for IgG band 41, I also tested positive on:
Lyme C6 IgG/IgM Ab EIA Result 2.11 Range: <.9
Lyme C6 Ab Interp Positive
Does this have any significance?
Thank you!
Here is my story......I have been experiencing double vision for over three years now. I can no longer wear contact lenses and now have glasses with prism lenses. After extensive testing by a neuro-ophthalmologist, he was unable to confirm the cause of my double vision. I had extensive blood work for Lupus, RA, MG, Lyme and an MRI of my brain. All came back negative. Due to the process of elimination, I was told I have ocular myasthenia gravis (although the blood work came back negative for it). Ophthalmologist said that many times these tests comes back as a false negative. So for the past three years I have been living in fear of having this disease and the possibility of it turning into full-body MG. (Even though no blood work supported the diagnosis.) I also suffer from bouts of Fibromyalgia.
ReplyDeleteDuring my recent annual physical, my primary physician and I discussed my vision problem. I brought up the fact that Lyme can cause double vision and asked if I could be tested again. He agreed and I just received my results in the mail.
The test concludes I am negative for Lyme...HOWEVER, I did test positive for Bands 23, 30, 41 (IgG) No Bands were positive under IgM. It says that five bands are needed to be present for a positive diagnosis of Lyme. I only have three.
I am quite concerned because I know some are specific to Bb (23,41). Is it true that the only way I would acquire these antibodies is through Lyme Disease? If I do have Lyme, this explains the mystery of my vision problems, and probably also the cause of all the joint pain associated with my "Fibromyalgia". My blood work also shows slightly elevated liver enzymes. This has happened a few times in the past 5 years, only to return to normal after retesting a few months later. I just read today that Lyme can also be the cause of periodic elevated liver enzymes?
I understand that IGenex might be the next step in finding out whether or not I do have Lyme, or do the test results I just received confirm it? I also understand that if I was living in California, I would be treated for Lyme since they only require two bands present. I live in New York. How can I have Lyme in one state and not in another? So confusing and frustrating!!!
I am going to contact the neuro-opthomologist that ran the Lyme test a few years back and see if there were any positive bands then. I never looked at the results myself, but only went on his word that it was negative.
I'm scared to think that I may have been carrying around this disease for quite some time now and worry that any neurological damage I have may be irreversible, even with medication. Should I pursue more testing through IGenex? Any thoughts or support would be greatly appreciated. Thank you!
Dear Anonymous,
DeleteYour test result with the 3 bands is pretty significant, because bands 23 and 30 ONLY appear in the case of Lyme disease. Band 41 is not specific for Lyme, but does confirm that you have a spirochetal infection (which is almost certainly Lyme, given the other two bands).
If you insist on having another test, IGeneX is a good lab, but it's not your only option... there is now a lab which has a CULTURE test for Lyme. In other words, they aren't testing for antibodies, they are actually looking for the presence of the spirochetes themselves!! Which is WAY better than a stupid Western Blot test, IMHO.
Advanced Lab is the one that has the new test, unfortunately it is not covered by insurance because it is considered to be "experimental", so they have to be paid up front (around $500 - $600, I think). Here is the link: http://www.advanced-lab.com/faq.php
Your doctor has to order the test from them; it can take from two weeks to about 2 months to get the results, but many people feel it's worth it because the lab actually sends you a photo of the spirochetes when you have a positive result!
Good luck,
JoAnn
Thank you for your reply JoAnn. I just checked out the advanced-lab you mentioned above and read that it is not yet available for New York. Go figure....I live in NY! Says it's been approved for 49 states, but no NY.
DeleteI did receive the bloodwork that was done a few years ago from the neuro-opthomologist, however all is states is a negative result. It is not broken down in the bands. So I have no way of knowing if any of the bands were positive back then. I think I'm going to pursue IGenex. I have a great Dr. and am wondering if I should save myself the time and $$ and just see if my Dr. will prescribe treatment for Lyme? Not sure if he will, but was thinking of just asking for an antibiotic for Lyme for maybe 2 weeks. Not sure if he would give me it for a month. Is there a general antibiotic they commonly use such as doxycycline (sp?) How are the side effects? If it works, does that mean there would be no more positive bands on future bloodwork should we test again down the road?
I fear further neurological damage if I do have it and it's left untreated.
If you have had Lyme long enough to cause neurological damage, 2 weeks of doxy won't do anything for you.
DeleteI wasn't diagnosed until I'd had Lyme for probably 6 years; I too have double vision (vertical diplopia no less!) and many other symptoms I won't go into. It took 3 years of antibiotics (many different ones) to get me to the point I am now.... partially healed, with Lyme disease (at least, temporarily) beaten into submission.
I still have double vision, but parts of my memory are back! I can, once again, recall long strings of numbers for example. The only thing that worked for me was an IV antibiotic called Merrem, 9 months of IV Merrem 3 times a day.
Please find a Lyme-Literate doctor (aka LLMD); since you are in New York, I know that there are some good ones there (and near there); no other doctors will treat you for more than a few weeks because they do not believe in chronic Lyme disease. You can get in touch with the Tick-Borne Disease Alliance by email (medicalinfo@tbdalliance.org) to find a LLMD in your area.
Here are a few of the doctors I know about (I'm sure there are more):
Steven Bock, M.D.
Rhinebeck Health Center
108 Montgomery St.
Rhinebeck, NY 12572
Tel: 845-876-7082
Fax: 845-876-4615
Website: www.rhinebeckhealth.com
E-mail: sbock@rhinebeckhealth.com
Dr. Richard Horowitz
Hyde Park, NY
(845) 229-8977
And here is a link to a Chinese medicine clinic in NYC, if you wish to try alternative treatments: http://www.zhangclinicnyc.com/
A wonderful LLMD in Washington, DC:
Joseph Jemsek
2440 M Street N.W., Suite 205
Washington DC, 20037
Phone: (202) 955-0003
Fax: (866) 457-0397
http://www.jemsekspecialty.com/index.php
I've also heard good things about Richard Rhee, who is a neurologist in Neptune, NJ who is supposed to be Lyme-Literate:
Richard Rhee
Jersey Shore Neurology Associates
Jersey Shore University Medical Center
Riverview Medical Center
Phone: 732-775-2400
Again, best of luck to you!
JoAnn
JoAnn, what are your thoughts about testing positive on the C6 peptide test? Is this almost a guaranteed result? Especially for two positive tests, that would be a 1/10,000 chance of being false positive. Thoughts?
ReplyDeleteDid you test positive twice with the C6 peptide ELISA? If so, you definitely have Lyme disease. As you already pointed out, the odds of 2 C6 tests being falsely positive is extremely small. But if you tested negative, there is no way to guarantee that you don't have Lyme. Here is a nice write-up discussing several tests, including the C6 peptide ELISA test. http://www.prweb.com/releases/2010/02/prweb3542194.htm
DeleteJoAnn,
ReplyDeleteI had an IGeneX test, with these results that I took to the llmd 1st appt:
IGENEx IGM Results: Positive
CDC/NYS Results: Negative
18 kDA +
31 kDa ++
39 kDa IND
41 kDa +
58 kDa +
83- 93 kDa +
(rest of the #'s are - neg)
IGENEX IGG Results: Negative
CDC/NYS Results: Negative
39 kDa IND
41 kDa +
58 kDa +
(rest of the #'s are - neg)
I have my 2nd llmd appt this month. This dr stated they believe I do NOT have lyme disease, but probably depressed and need Celexa. Also stating that they believe that if I take Celexa, all my symptoms would go away. I have many, many physical and mental issues for years that align with Lyme/co.
This Dr had me do 16 blood tests. CD57 and Babs done at LabCorp, and the rest at my lab. I'm wondering if the Dr doesn't think I have lyme with my results via IGeneX, what will they say about a LabCorp test?
Any thoughts? Comments? Many thanks.
Are you absolutely certain the doctor you are seeing is an LLMD? Most LLMDs would give some credence to the positive IGeneX result! That result is significant, you are positive for bands 31 and 83-93, which can ONLY appear if you have been exposed to Lyme disease. The IGeneX Western Blot plus your Lymie symptoms = clinical diagnosis of Lyme disease for any LLMD worth his or her salt! OK, I'm not a doctor so am not qualified to make a diagnosis. But something seems fishy here!
ReplyDeleteCan you get a second opinion? Yes it may be difficult to find another LLMD in your area but it will probably be worth it!
Good luck!
JoAnn
I started having right knee pain around August. After about 2 months I started noticing some swelling, thinking I must have twisted it or something but not remembering doing anything I just started taking ibuprofen & icing it as much as possible. Well about a month ago my left knee started feeling just like the right! I was stumped! After a week w/ both knees & legs causing so much pain I kept insisting I was going to get checked, SOMETHING had to be going on! Finally last Tuesday, the 10th I had someone take me to the ER because driving even caused me pain. The Dr. asked if I ever had a "bulls eye" mark. Nope, never did...He said he was going to do a Lyme test anyway since I don't recall doing anything to hurt myself & I was at a campsite a few times during the summer. Anyway, here are my results:
ReplyDeleteComponent Results
LYME IGG/IGM AB POSITIVE
LYME IGG/IGM AB VALUE 1.35
LYME G/M COMMENT TEST RESULTS REPORTED TO PA DEPT OF HEALTH.
18KDA IGG NOT DETECTED
23KDA IGG NOT DETECTED
28KDA IGG NOT DETECTED
30KDA IGG NOT DETECTED
39KDA IGG PRESENT
41KDA IGG NOT DETECTED
45KDA IGG PRESENT
58KDA IGG PRESENT
66KDA IGG PRESENT
93KDA IGG NOT DETECTED
LYME WB INTERP. IGG NEGATIVE: IGG ANTIBODIES NOT DETECTED OR PRESENT TO FEWER THAN THE REQUIRED 5 OF
10 SIGNIFICANT BANDS
23KDA IGM PRESENT
39KDA IGM NOT DETECTED
41KDA IGM NOT DETECTED
LYME WB INTERP. IGM NEGATIVE: IGM ANTIBODIES NOT DETECTED OR PRESENT TO FEWER THAN THE REQUIRED 2 OF
3 SIGNIFICANT BANDS
General Information
Collected:12/10/2013 5:55 PM
Resulted:12/13/2013 2:59 PM
I got these results off my online medical site but didn't here from the ER Dr. so I called my family Dr. yesterday & they called back stating she wasn't sure about the results & that she would get back to me today after she contacts Infectious Disease...NO CALL :( MY DR. isn't sure?!?!?! DO I OR DON'T I HAVE THIS????
So your Lyme IgM/IgG antibody serum test was positive, but your Western blot tests, both IgM and IgG, were pronounced negative. This would be negative according to the CDC, of course. Also negative by IGeneX standards.
DeleteYou do have one band highly specific for Lyme that is positive for IgM - band 23. Also one highly specific band positive for IgG - band 39. Your symptoms sound like classic early Lyme disease symptoms, which frequently begin in the joints.
My first symptom was also pain in my right knee, along with a small "bullseye" rash on my right thigh, although I didn't recognize it as such at the time.
When you get hold of her, your doctor is almost certainly going to give you the "politically correct" answer to your question, and tell you that you do not have Lyme disease. Or she will send you to an Infectious Disease doctor who will tell you this. You must realize that many doctors are scared to buck the powers that be (IDSA, CDC).... with good reason. There are doctors who have been driven out of their practices, who have lost their licenses, all because of opposition to those institutions and their outmoded diagnostic and treatment criteria for Lyme disease.
I recommend that you find a Lyme-Literate doctor (aka LLMD) in your area ASAP. Only a LLMD has the knowledge to diagnose you based on your clinical symptoms (joint and leg pain) and your bloodwork. There are better blood tests out there, including the C6 peptide ELISA test and Advanced Lab's Borellia culture test.
Best wishes to you!!
JoAnn
Thank you JoAnn! I'm going to see what I can do ASAP to get further testing done BEFORE this goes any further!! I appreciate the quick response! I was just really confused on one being positive & being sent to the Department Of Health but the WB being negative.... TY again!
DeleteHello,
ReplyDeleteI am a little late to the convo but am looking for some help. I recently went to an orthopedic surgeon due to pain in a single joint. They took blood tests one of which was the western blot (per CDC criteria) and I showed reactive to 18, 30, 41, and 58. The Orthopedic surgeon told me I had lyme disease based on this but due to his lack of knowledge (and looking up answers to my questions via google) I chose to talk with an infectious disease doctor who told me I DID NOT have lyme. Now I am reading bands 31 and 34 are the most specific to lyme disease which were not even tested for. This is frustrating. In anyones opinion did the antibiotic treatment help? It is really frustrating to find the "ins and outs" of how the CDC came up with the 5 of 10 strand to be positive theory. Any help would be appreciated.
Hi Jeff,
ReplyDeleteYou have definitely been exposed to the Lyme spirochete, and since you have symptoms, I'm guessing that you do have ACTIVE Lyme disease. No, you do not have it based on the CDC criteria, yes, you DO have it based on common sense. NOTE: I am not a doctor and am not offering medical advice. This is my own "humble" opinion.
You did not say whether your Western blot results were IgG or IgM, which makes a difference. Which lab did your bloodwork? The best lab I know of for Western Blots is IGeneX: www.igenex.com They are awesome, and they have their own negative/positive criteria which they show along with the CDC results AND they show "indeterminate" readings, meaning that if there was a faint band there but it was too faint to be called "positive" it is labeled indeterminate. Many Lyme-Literate doctors count the indeterminates too.
Please find a Lyme-Literate doctor (aka LLMD for short). Just Google LLMD in your state and you should see links to local organizations that will help you find one. If not, you may have to travel to another state... many people do. Also, please call IGeneX and get them to send you a test kit for the Western Blot. Take the kit to your Ortho surgeon and get him to order this test done at a local lab (he has to prescribe it), then take the kit and the prescription to the lab to have the blood drawn. Read the instructions on which day of the week/time of day it is best to do this.
Google "how did the CDC establish the criteria for a positive Lyme Western Blot" to get the answer to your question. Bottom line, it's all about greed, politics, and more greed. Warning: it will make you mad.
Good luck!
JoAnn
Yeah it has already made me quite mad. People disagree with me when I reject some doctors "authority", but I feel sometimes the patients interest is not in their best interest and it is all about politics and greed. I had both the IgG and IgM done.
ReplyDeleteIgG
18 Reactive
23 Non Reactive
28 Non Reactive
30 Reactive
39 Non Reactive
41 Reactive
45 Non Reactive
58 Reactive
66 Non Reactive
93 Non Reactive
IgM
23 Non Reactive
39 Non Reactive
41 Non Reactive
Quest Diagnostic did the blood test. I was tested for both IgG and IgM. Nothing came up reactive with the IgM. What I listed before came up reactive with IgG.
ReplyDeleteWhat are your thoughts on treatment? antibiotics seem to be the "leading" treatment among doctors.
Hi JoAnn,
ReplyDeleteFirst, I'd like to thank you for such an informative site which has really helped me interpret my Western Blot. It's really great what you are doing here. I really appreciate it.
I tested positive for IgM 23 and 41. No IgG bands present. And I currently have a dental infection. I'm seeing the Dentist on Monday. Since 41 could be 'any' spirochetes, I'm thinking maybe I DON'T have Lyme. However, I am being treated by a LLMD and I am currently 'pulsing' on Doxy and Z-Pak - 200Mg, MWF, 3 weeks, one week off, then repeat. Since I tested positive for the same bands in August, 2013 which back then was treated with the standard 3 weeks of doxy, maybe I DO have Lyme and the 3 weeks was not enough to rid myself of it. So confusing. In any event, I never would have pieced a possible connection to my condition (fatigue, joint pain, headaches) to
a dental spirochete. A new theory to pursue while I continue the LLMD treatment.
All the best to you.
Bob
Hi JoAnn! I want to thank you for this post. I stumbled upon it because I am finally getting my IgG & IgM back from my LLNP. Igenix & CDC says I'm negative even though I have more symptoms than I have time to tell you about. I don't even know what a normal person is like anymore because I have so many abnormal things going on. On both IgG & IgM, band 41 was IND which I know is not indicative of Lyme, only of a spirochete. And I figured that out based on reading all of your answers & research. Thank you! My band 83-93 on my IgM was also IND but negative on the IgG. What does the 83-93 band indicate?
ReplyDeleteWell, this is from my post, above:
Delete"83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients "
So band 83-93 is the same band, just in a different position in the Western Blot for some patients. And it is VERY specific for Lyme disease, which means that NO OTHER bacterium will cause this band to appear, ONLY Lyme diseae. Since a "IND" is a faint positive, I would say that you need to be treated for Lyme disease, because if is very possible that you have it. Although your doctor is the one that should make that decision, together with you.
Good luck!
JoAnn
Hello Joann
ReplyDeletewhat a lot of great info here! I am also indeterminate for 83-93. And 2 others. My question is since it's a faint positive, why then do they say one is negative in their results?
Hi ccrew,
ReplyDeleteThose indeterminate bands are below the threshold for "positive". They can be seen but are just too faint to be called positive. So if your lab does not report indeterminate bands, it has to be considered negative. IGeneX is one of the few labs that reports all findings for all bands: positive, indeterminate, and negative results.
Best wishes,
JoAnn
Hi, My husband was diagnosed with RA,fatigue ect. in 2006, At my request was put on antibiotics for 10 months with complete improvement. Doctors never mentioned Lyme.
ReplyDeleteIn 2010 suddenly he goes Manic and is labeled Bipolar at age 46 with no history of mental illness.
Last 4 yrs. he has been manic,delusional,depressed,anxiety, OCD,Low body temp, hyper-sexual,Raynauds Syndrome,adrenal fatigue, low sex drive ect.
Hes on 2 anti-psychotics that help control some of his delusions.
Had an IgeneX test...IGM he is IND on bands 31 and 41
IGG he is ++41 and IND on band 39
He could possibly have a dental infection, He has a few cavities.
Could he have Lyme? Should i find an LLMD?
Thanks, Becca in NY
Hi Becca,
DeleteSo sorry to hear about your husband's mental and physical health issues.
The answer to both of your questions is a resounding YES. Yes, he could have Lyme disease, and the only person qualified to determine whether or not he does have Lyme is an LLMD who is a member of ILADS. Remember, bands 31 and 39 (although IND for your husband they were THERE) are specific for Lyme disease. Dental spirochetes should not cause those bands to appear.
Please search online with Google or some other search engine to find reviews of local LLMDs, it is crucial that he be seen by an experienced doctor who is willing to try both traditional and non-traditional treatments.
Chronic (Stage 3) Lyme can cause any number of psychiatric problems, here are some links to medical articles on this topic:
http://www.ncbi.nlm.nih.gov/pubmed/7943444
http://www.ncbi.nlm.nih.gov/pubmed/22422416
http://www.lymebook.com/lyme-disease-mental-illness-schizophrenia-bipolar-ocd
From my own experience (not with mental illness but rather severe memory loss), IV antibiotics made a much bigger difference in my mental functioning than oral meds did. I was on IV Rocephin and later, IV Merrem. The Merrem brought back parts of my memory that I thought I would never be able to access again.
Please try to get him in to see an LLMD as soon as possible.
Best wishes to you and your husband!
JoAnn
JoAnn, Thanks for you quick reply...You have confirmed to me that were on the right track now.
ReplyDeleteI`v found an LLMD about 3 hrs. away and will call to make an appointment.
My question is, I have heard of IV antibiotics being better for late stage Lyme but have also heard its extremely expensive and this LLMD does not take any insurance and i don't even think his ins. would cover anyway.
Could you give me a round about estimate for monthly IV antibiotics?
Thanks, Becca:-)
Hi Becca,
DeleteFrom my own experience I paid about $2000 per month out of pocket for IV Rocephin, IV tubing, Huber needles, saline and heparin flushes, dressing kits, etc, etc. But when I was on IV Merrem my doctor helped me fill out an application for Astra Zeneca's Patient Assistance program, so I got the medication itself free (I've heard it can be as much as $12,000 a month, I was doing 3 IVs a day). I still had to buy the IV supplies though, they were about $1000 per month. We maxed out our credit cards, and had to move to a cheaper place to live; I was on IV Merrem for 9 months and I think it saved my brain.
I'm not completely well by any means, but I think that my Lyme is in remission to some degree, and my remaining symptoms are now caused by various autoimmune diseases and fibromyalgia that were triggered by the Lyme and other tick-borne illnesses.
But I've heard that whether insurance will cover expenses or not depends on the coding used for diagnosis. ICD9 code 136.9 seems to work the best. The description is multiple bacterial infections, not otherwise specified; multiple parasite infections, not otherwise specified. When this code is used, which is accurate for most of us, since we have multiple infections, even IV therapies may be covered, with no limitations on coverage. I wish I had known this a few years ago!
Take care, and good luck with everything!
JoAnn
Hi Joann,
ReplyDeleteAfter finding this website tonight, I am very sad; but also hopeful, more so than I have been in awhile. I have been chasing symptoms for about 3 years and lab tests showing negative for Lyme. I don't even recall ever seeing a bullseye type of rash and have recently learned some people don't show that symptom. I've been recently diagnosed with Hashimoto's. When I have complained of fibromyalgia type pain and joint pain I was sent to rheumatologist whose test shown an elevated C4, but no other markers. I just took upon myself to do I-Spot Lyme and Western Blot with Pharmasan Labs. I show reactive IgG bands 23 and 41 and the results say negative or Not reactive based on CDC/ASTPHLD criteria and as you point out it says it's positive if 5 of the bands are reactive. So I've been walking around still in pain thinking I'm negative and now I see that is not the case at all! My trust in the conventional medical community lessons with each passing day! I have taken your advice and emailed ILADS requesting names of lyme literate doctor's as my PCP has proven worthless. I fear after so much time as gone by, I pray it is treatable. Unfortunately it has already triggered autoimmune disorders and that won't change. But I am so hoping treatment will get rid of the other symptoms that make the quality of my life bad. Thank you so much for all the information. Kim
Kim, my heart goes out to you... if you're positive for IgG bands 23 and 41 and have had at least 3 years of chronic joint pain plus fibro symptoms, in addition to your immune system damage as evidenced by the Hashimoto's thyroiditis, you very well may have late-stage Lyme disease. Praying that you will be able to find a good LLMD.
DeleteBut take heart, even Stage 3 Lyme is treatable. And remember that knowledge is POWER. It took me 6 years to be diagnosed, and I took abx for nearly 3 years. Afterwards I felt so much better, especially with 9 straight months of IV Merrem at the end. I still feel better, although I have noticed a few symptoms of Lyme trying to sneak back at times. I take olive leaf extract daily to try to keep it at bay. I have at least six different autoimmune diseases plus fibro now, and I know that Lyme triggered some of them. But things are much much better! I was using a wheelchair from 2008 to earlier this year and now I am daring to go about without even my walker! I just have to make sure I don't have to walk too far.
Things WILL get better for you!
Take care,
JoAnn
Hi JoAnn,
ReplyDeleteThank you for your words of encouragement. I see I'm in for a long haul of therapy. God Bless you and all you have been through. I am glad to read that you are doing better. I wonder why even after years of Abx, it still wants to keep back in. Do you know why that is? I'm trying to educate myself more and you know more than the conventional doctors! I did get names of 3 MDs from ILADS. Working on getting in to see one of them, whoever can see me first. And if he doesn't turn out to be good, will move on to the next one. I just don't understand how our conventional medicine arena can be so clueless!
Thank you for listening. Kim
Kim, there are some people who say that they have treated and defeated their Lyme disease, and it has never returned. But my sister-in-law, who took abx for 18 months, and then for 10 years thought she was free of Lyme, became sick again about a year ago. It actually attacked her heart, and she was hospitalized for a couple of weeks. Lyme can go dormant in your tissues then attack again, many times in a different part of your body, years or even decades later. Others find that they can never completely get off antibiotics... the famous author Amy Tan has said that every time she tries to stop taking them, her Lyme disease returns. But I pray that you will be successful at getting rid of Lyme, completely! Good luck!
DeleteJoAnn
JoAnn,
ReplyDeleteI hope your sister is doing much better. Thank you for more details. I didn't realize that lyme can go dormant. Well, I have a lot of education ahead of me. I now have an appointment in July with a LLMD. Wish the appointment was sooner, but at least I am getting seen now and not ignored by my own PCP. Thank you for your good wishes. I will let you know what happens. God Bless, Kim
Any links to the article pn chinese research suggesting a single positive double star band...should in fact be treated as positive would be so appreciated.
ReplyDeletethis whole western blot fiasco leaves me with a IND on the igenex W.B. Igm...
wife is postive on elisa also igenex...neg. on c6.,,,neg or IND on w.b.
babesia active infection....anaplasmosis active infection...lyme like symptoms for almost 5 years and three kids who may also be affected/ infected.
Thankss for any links on chinese study
Hi Anonymous,
DeleteSorry to hear about you and your family's Lyme disease woes... I feel for you! I could not find the article in question in my (brief) search on Google. I will try again tomorrow... I've asked my husband to remind me, I might forget. :(
But I was able to find an article in which Chinese researchers recommended just TWO bands for diagnosis: http://www.besjournal.com/Articles/Archive/2013/No3/201302/t20130220_77498.html
Best wishes and prayers for you and your family!
JoAnn
Hello 4 weeks ago i was bit by several insects head and legs. Never seen any ring with bulls eye. But 5 days later i woke up with chills that went away but i felt cold quite a bit. Did a 10 day 2 per day doxy just in case. Never have had a fever but for the first 3 days no appetite after a week felt almost completely better just fatigued easily. Went on vacation for 5 days and the exact same symptoms came back which lasted the same amount of time. The first three days both times i felt extreme anxiety. Over the last 4 weeks i have had 3 Elisa tests all negative. The most recent one came back with the igg 45 reactive and 66 reactive. Should I see a LLmd? I have not had a fever or any aching neck or achy joints. I also understand the igm antibodies show up first and turn into igg. I forgot to mention the first round i also had a severe headache for 3 days. Any insight would be great to what people's first symptoms were. Thanks
ReplyDeleteI failed to mention in my previous that i was on a golf course and i never sighted a tick. I just had a few spots that i got bit that itched. And also had to lie down to stretch my back in a lightly wooded area. That's why i have been concerned of lyme.
ReplyDeleteThanks
Forgot one last thing, the sweating at night. Forehead and back of neck. All my other blood work has been done 3 times also and all my numbers are good. The first time my nuetraphills were low and the doctor said that could mean a virus.
ReplyDeleteThanks
Hi-thank you for this blog, very informative. My tests were done at Igenix. I am + for many bands on IGG and IGM test. IGENEXCDC/NYS result says POSITIVE on the IGM. On the IGG IGENEX says POSITIVE, CDC/NYS says negative (I have 4 + and 1 IND). I understand CDC has their own criteria but I don't understand the difference between tests. ALSO
ReplyDeleteIn the Multiplex PCR test I am NEGATIVE for both Genomic and Plasmid B burgdorferi. How can I be positive for Lyme, but negative for burgdorferi. And does this mean Insurance won't pay for anything? Thanks.
Hi Kate,
DeleteIf your IgM test result is positive by the CDC, I would think that insurance ought to pay. I don't know why PCR is negative and WB is positive though... different tests are sensitive to different things and there are many factors involved. I admit to not knowing a lot about PCR tests, except that they detect the DNA of the Lyme bacterium by amplifying it. I think that it is normally supposed to be more sensitive than the WB, but stranger things have happened.
Good luck and prayers to you,
JoAnn
Hi Kate,
ReplyDeleteIf your IgM test result is positive by the CDC, I would think that insurance ought to pay. I don't know why PCR is negative and WB is positive though... different tests are sensitive to different things and there are many factors involved. I admit to not knowing a lot about PCR tests, except that they detect the DNA of the Lyme bacterium by amplifying it. I think that it is normally supposed to be more sensitive than the WB, but stranger things have happened.
Good luck and prayers to you,
JoAnn
I am so confused with my tests. Tested negative for Lyme but positive for Anaplasmosis. Had a C-6 Peptide test and it was positive and notes high on the results. Yet the IGG and IGM Western blot show insufficient number of bands for positive result and list negative as a result.
ReplyDeleteTeresa, I'm sorry in the delay in posting your comment. I just found your comment, and had never received any notification of it. I hope you are seeing a LLMD at this time and are under treatment! There is a post on my blog about why people get false negative Lyme tests that you should read: http://lymetwistontherocks.blogspot.com/2011/06/nine-reasons-for-false-negative-lyme.html Take care.
DeleteStill confused. I was sent to an infectious disease dr by my primary but was denied a second picc line in Jan. and have no future appointments as she does not feel that I responded to 6 months of doxy, cephin and IV rocephin. Waiting for a referral so I can see an LLMD. I feel awful on a daily basis.....
ReplyDeleteGenerally you don't need a referral to see a LLMD. They understand VERY well that many doctors believe that this disease is easily dealt with by mere weeks of antibiotics. I'm really pleasantly surprised to hear that your primary doctor referred you for treatment and that you were actually treated with antibiotics for 6 whole months by an ID doctor. That's pretty good for an ID doc, because most of them think that Lyme disease will be gone in 3 weeks of doxy. It took me 3 years of antibiotics to actually feel even partially better, and I've heard of people who were on antibiotics for 10 years. Not that I believe you will be on them that long, but 6 months is not usually enough time to do much damage to a serious case of Lyme, especially since you may have had it for quite a while before you got really sick. Anaplasmosis is no joke either. Have you found a LLMD yet? They are sometimes hard to find, depending on what state you're in. If you haven't found one, here is a link to a LLMD referral service: http://www.lymediseaseassociation.org/index.php/doctors
DeleteTake care, JoAnn
I am actually surprised that she prescribed a picc line also. I really was so sick all last year and so lost & confused that I just went along with the program they figured would make me better. The nurses in her dept. were very aware of how sick Lyme patients were and did picc lines on a routine basis. After reading all the controversy about treatment and picc lines I don't get it at all. It seems she headed me in the right direction, gave me a proper test that confirmed Lyme, treated me for months and then said she couldn't help me anymore....I have never heard from her since I was denied the 2nd picc line in Jan. I just found 2 ILADS LLMD Dr's in the Albany area so thank you for your help! I will call tomorrow & see if I can get an appointment.
ReplyDeleteYou're welcome! Best wishes to you for a successful treatment!
DeleteJoAnn
23igm, 41igg & 66igg came back as weak reactive. Is this a positive? I was just diagnosed with heavy metal toxicity and very high iron levels. Now Lyme too?
ReplyDeleteTania, I'm so sorry you're dealing with all of that.
DeleteIf you had 23 IgM and 41 IgM, that would be positive for IGeneX labs, but apparently you had 41 IgG, is that correct? Unfortunately, 66 IgG or IgM is cross-reactive and not exclusive to Lyme. Band 41 is not Lyme-exclusive either.
In my own humble opinion, band 23, either IgG or IgM, is proof of Lyme disease all by itself, because it IS exclusive to Lyme. No other bacteria or virus causes that antibody to be created. If that is combined with other symptoms that indicate Lyme, you will likely be diagnosed with Lyme by a LLMD. Are you seeing a Lyme Literate doctor? If not, here is a link: http://www.lymediseaseassociation.org/index.php/doctors
That is a Lyme doctor referral service, there are a few states that have no LLMDs at all, so people have to travel a ways, but it will be worth it to be treated!
Good luck with everything, I'll keep you in my prayers.
JoAnn
I went to my doctor due to random low fevers, severe fatigue severe joint pain, hair loss that comes out in clumps, migraines etc. He ordered blood work for lyme disease. After my results came in he told me I'm negative for lyme disease. My results:
ReplyDeleteLyme Igg/Igm ab : 1.16
Igg P41: Present
Igg P39: Present
Igm P23: Present
Lyme Disease Index: 1.07
Not sure if I should still pursue Lyme disease or start trying to figure out what could be causing my symptoms.
Any advice would be greatly appreciated!!
Hello, JoAnn.
ReplyDeleteLast year I was diagnosed with reactivation of childhood mono. A month later I started having strange tingling sensations in my hands and feet (sparklers, I called them) and joint pain. My nurse practitioner ordered an ELISA and Western Blot if the ELISA was positive. At that time the Lyme Disease AB, Quant, IGM showed positive at 1.39. The only positive band was 41 on IGM. She gave me 3 weeks of doxy and sent me to an ID specialist who said I did not have Lyme. After that I was diagnosed with fibromyalgia and am now on all sorts of drugs with no real improvement in symptoms. March 21st of this year on a trip to another state I pulled out an embedded tick. I told my NP about it when I saw her in early April but she forgot to test for it. So she had me return last week and I got the results today. (both are via LabCorp, by the way) The Lyme Disease AB, Quant, IGM is now 1.52 and the only positive band is 39. Is it worth seeking the advice of an LLMD? I *think* I've read that 41 is the first to show up, but of course I don't recall any tick bites last year. Other than the bite in March of this year the last two I've had to remove were about 9 and 16 years ago. Oddly, I started having migraines after that bite 16 year ago at age 30, which is pretty old for migraine onset. After reading every post on this page I value your opinion and thank you for taking the time to help so many navigate the very murky waters surrounding Lyme diagnosis and treatment. Renee
Hi Renee,
DeleteI'm so sorry to hear about the issues you've been having. My immediate reaction to reading your story and your question is to say, yes, absolutely it is worth it to seek out an LLMD. Fibro can definitely be triggered by Lyme. People will not all make the same antibodies to Lyme at the same moment or even at all. Lyme and at least one of the co-infections of Lyme can suppress and re-program your immune system, which can keep you from producing the antibodies that the IDSA insists EVERYONE has to show to have a positive Lyme test. Of course there are other reasons why you may not have a positive (enough) test. 41 is not specific to Lyme; it will show up for syphilis and gingivitis (dental spirochetes). But I've read that 39 is specific to Lyme. That plus your symptoms mean that it is worth it to see an LLMD, to have Lyme ruled out or in. But please get some recommendations through http://www.lymediseaseassociation.org/index.php/doctors. And Google their names and look for references or reviews.
Good luck to you!
JoAnn
Thank you for your response, JoAnn. I submitted a request and they gave me two names (they gave the same Dr twice for some reason) but I will definitely be contacting them. I know I don't have any STD's but I'm not sure about the dental side of it. I thought it was odd that one of the IGM bands necessary for a positive showed up last year and another of the three showed up this year. Like you said, I'm betting the little buggers are hiding. I've never really bought into the fibromyalgia diagnosis and none of the treatments prescribed thus far have helped. I really don't like taking muscle relaxers, etc., especially when they aren't helping. Meanwhile my hands and feet are almost always numb and/or tingling now and the pain, stiffness and swelling are just increasing. Again, thank you so much for your guidance.
ReplyDeleteTake care!
Renee
Hi JoAnn, I am really confused about my Igenex results. Can you help? My Igenex IGM result was Negative with bands 39 IND and band 41+++. My Igenex IGG result was negative with band 39 IND and band 41++. So does this mean I don't have lyme as the result was Negative?
ReplyDeleteHi Sharon,
DeleteIGeneX is saying that your result is negative by their standards because you need to have two bands positive, and IND means that it was too faint to be considered positive (by their standards). To me, and to many LLMDs, IND is still positive. Band 39, by many accounts, is specific to Lyme. I'm not a doctor, so I cannot say that you have Lyme, but if you have the symptoms and you have 39 IND and 41 positive for both IGM and IGG, you need to find yourself a LLMD right away. Good luck!!
JoAnn
JoAnn , I posted back on March 2, 2015 and I have an update. I had an ispot Lyme test done and co-infections as well. My ispot came back as positive for Lyme 41 & 93 IgG and I also have co-infection Mycoplasma Pneumoniae. I will be starting on the Cowden protocol soon.
ReplyDeleteHi Tania,
DeleteThanks for the update. Sorry to hear that you were positive for Lyme and Mycoplasma pneumoniae, but it sounds like you are being treated by a Lyme-Literate doctor... is that right? Good luck with the Cowden protocol, I hope it works well for you!
JoAnn
Hi guys. Ive tested equivocal on the elisa and only present 18 igg western blot. Some LLMD's website said that this is the only band that needs to be positive for lyme. I feel like crap. I am so depressed, I vabrate, feel like worms are in my shoulders and neck, and my neck clicks and cracks with ice pick migraine headaches. I could go on and on. #HELPMEJESUS
ReplyDeleteAnonymous, I'm so sorry that you're having those terrible symptoms. Unfortunately I won't be able to help you, you MUST see a Lyme-Literate doctor (LLMD). Here is a link to help you locate one: http://www.lymediseaseassociation.org/index.php/doctors
DeleteGood luck!
JoAnn
Hi JoAnn,
ReplyDeleteJust wondering if you ever heard of the MSA (Meridian Stress Assessment) I have had Lyme symptoms for 11 years and have been diagnosed with fibro. I recently went to a CHHP who did the MSA and it detected Borrelia burgdorferi and Rickettsia along with some other heavy metals and Cat Scratch Virus. I am convinced I have Lyme, even though my ELISA was negative and the Western Blot only showed positive for 66 kDa on the IgG and none on the IgM. Just curious if you have any experience with the MSA? Or know anyone that does? I am seeking a LLMD in the meantime.
Thanks!
Angela, I'm sorry, I haven't heard of the MSA before. I would try joining some of the Yahoo and Facebook groups for Lyme and asking about the MSA in the group.
DeleteI do believe that you are right to go to an LLMD, absolutely! The Lyme symptoms and diagnosis of fibro are good enough reasons. Where were you tested for Lyme, at IGeneX or some other lab? If not at IGeneX, you might want to consider being retested. Be sure to be tested by a lab that specializes in Lyme testing, other labs aren't nearly as accurate. Also, you may want to consider one of the newer tests that actually culture the Lyme bacteria: http://www.advanced-lab.com/spirochete.php Of course your LLMD will know about it.
Good luck with everything!
JoAnn
JoAnn,
ReplyDeleteThanks for the quick response! No, the lab was not IGeneX, but whatever one my family Dr. used. I have scheduled an appt with a LLLMD, but unfortunately, it is not until September. They will run further testing, so I will just wait for that. My knee pain makes life miserable and the muscle twitching is very annoying, along with 100 other symptoms I don't have time to mention. My heart goes out to you and everyone reading this. I think I am in for a long battle and I'm not sure how to make it through. I have had pain for 11 years and I'm not sure how much more I can take. If you have any experience in the knee pain and joint pain and have any ideas of how to make it lessen, I would sure appreciate any advice. Hugs to everyone!
((((((((((hugs)))))))))) to you too, Michelle. I understand, I had literally dozens of symptoms which could change from day to day. I did have knee pain and mostly just suffered through it for years until I had some diagnoses and doctors who prescribed pain pills. Ice or heat may help a bit. I had severe back pain that put me in a wheel chair for several years. I ended up on antibiotics for 3 years before the Lyme symptoms improved significantly, so I'm not sure what advice to offer, other than to take detox baths, dry skin brushing, etc, until you see the LLMD. I would not start taking any herbal antibiotics on your own, because he or she may want to do the culture test, and you have to be completely antibiotic-free for a month before that test. Again, please join some Lyme groups and ask people questions. I feel bad that I don't have answers for you.
DeletePraying that you will get some help very soon!
JoAnn
I tested negative on the IGM and reactive on bands 45 & 58 of the IGG... My Lyme Antibody results were 0.92 (Equivocal)... Thoughts?
ReplyDeleteHi,
ReplyDeleteI have had three negative ELISA tesrs and just got the call that my WB was "non reactive". The nurse didn't seem to understand the question when I asked if I had any positive bands at all. I urged my dr to run the test through Igenex but she wouldn't. I have been very sick for two years with weird and sometimes debilitating symptoms. I have a positive ANA and they thought I had lupus at first bit have since put me in the category of "unspecified autoimmune". I feel so desperate and after 20 drs and specialists, countless meds and even a trip to the psychiatrist, I will finally see an LLMD on Sept 15th. I am scared that even the Igenex will come back negative and I will be back to the drawing board. Is it possible to be non reactive on a normal WB but positive through Igenex?
Yes, it is definitely it is possible to get a "non reactive" on another lab's WB and be positive through IGeneX. Their criteria are different and their tests are more sensitive. But there are new tests out there that may work better for you, so be sure to ask your LLMD about them. You may also have autoimmune issues because Lyme is good at triggering AI diseases.
DeleteBest wishes to you, I hope that the LLMD is a good one and can help you!
JoAnn
Hello JoAnn, and thank you for this reassuring and inspirational site.
ReplyDeleteI recently got tested by my hospital's lab (no idea who runs it, or if they run it themselves). The results came back as all negative (yay!) except for one: 41 IgG. (the IgM was negative)
I can't recall ever being bitten by ticks (I'm hardly an outdoorsy type) but I've been feeling worse since July (insomnia, joint pain, tendinopathy) and know SOMETHING is wrong, just not sure what.
My parents say I had Lyme when I was 8 years old (I am now 30). Could it just have been lying dormant and then decided to re-emerge and torment me?
Hi JK,
DeleteYes, Lyme can absolutely go dormant then re-emerge years later to make your life miserable. And you really don't have to be the outdoorsy type to be bitten by a tick and contract Lyme disease. Birds can carry the ticks anywhere, and a pet dog or cat can bring a tick indoors. Or you can simply be walking through your own yard to go into your house, and pick up a tick by brushing against grass as you walk.
Just because all of the bands were negative except 41 doesn't mean that you aren't producing Lyme antibodies. Look for a post on this site about the reasons that your Lyme test can be negative even though you actually do have Lyme.
Take care... and good luck!
JoAnn
Dear JoAnn,
ReplyDeleteMy dear Aunt has been researching like crazy to help me figure out the cause of my disease. I have been diagnosed with MS and I have a lot of neurological symptoms. I also recently sent a test into Igenex which has been interpreted by a literate Lyme doctor as Lyme. The Lyme literate doctor could not answer as to whether I had MS. Can I have both MS and Lyme? I'm currently on medications for both. Who can give me a definite answer? How can I get a definite answer? Desperately searching for the real answers. Please advise.
THANK YOU!!!
Krispykreme
Hi Krispykreme,
DeleteThat's awful that you have so many neuro symptoms... I had many of them too, and that was what caused me to seek out a diagnosis. MS is an autoimmune disease, which, as you know, means that the immune system is attacking the body itself in some way. In the case of MS, the attack is against the central nervous system.
I have several autoimmune diseases myself (not MS though), along with fibromyalgia, and I'm convinced that many of these were triggered by Lyme. There are a number of instances in medical literature of autoimmune diseases triggered by infections.
In my opinion (I'm not a doctor), it should be possible to have any type of autoimmune disease at the same time that one is suffering from Lyme. And here is a link to a Lyme blog (by a doctor), in this post he states that Lyme may be mistaken for MS, but he seems to imply that it IS possible for Lyme to trigger MS and for a person to have both.
Although I sincerely hope that you do NOT have both (in fact that you have neither), I pray that you will recover as quickly as possible from any illnesses that you have.
Take care,
JoAnn
Dear JoAnn,
DeleteThank you so much for your reply. I appreciate your kindness and empathy.
Are there any doctors in Wisconsin that could help me to know how to proceed? I'd rather not be on both medications for the rest of my life if it is not absolutely necessary.
Thank you for your concern and kindness.
Krispkreme
Hi Krispykreme,
DeleteI understand... I have been able to stop Lyme treatment (although I am still taking an herbal antibiotic to keep it at bay), but will probably never be able to discontinue my other meds for the autoimmune diseases.
I don't personally know of any LLMDs in Wisconsin, but I did a Google search and found a doctor named John G Hoffmann. I called him and was actually able to speak to him. Very nice man, he still treats Lyme disease despite the local medical board trying to take away his license due to the fact that he does the right thing and treats as long as necessary, not just for 30 days (current AMA guidelines). Here is his information:
Dr John G Hoffman,
199 S Division St
Waupaca, WI 54981
715-942-2154
Dr Hoffmann was kind enough to give me two more names of LLMDs in Wisconsin:
Dr. Robert S. Waters, MD
www.watershealthcenter.com
320 Race St, Wisconsin Dells, WI 53965
(608) 254-7178
Dr Steven Meress
180 Knights Way
Fond du Lac, WI 54935
920-922-5433
http://www.foxvalleywellness.com
Also, here is a link to a LLMD referral service: http://www.lymediseaseassociation.org/index.php/doctors
I hope you find someone who can truly make a difference in your health!
Best wishes,
JoAnn
Hi Joan,
ReplyDeleteIn your prevoius post you mentioned Labcorp as a good lab, do they test for bands 31 and 34? How do they compare to Igenex?
Also I was wondering even if I tested neg for Igenex coinf, that I might have Bart, my feet are always sore, especially my arches, and something I get the pinprick pain right on my arches. Heard that the ice picking headache/eyes pain is caused by Bart, what do you think?
One more question, how come ALL my testing is perfect, not a low or high, if I have Lyme? Done every test from crp, ESR, RA, MYast grav, Spinal tap, 5 MRI, and MORE. Isn't the bug supposed to cuase some changes on my results and not just all this neurological symptoms( using cane)? Is it maybe cause I got bitten on March this year and is just matter of time? Maybe cause I been on abx the last 5 months??
Hi Unknown,
DeleteIGeneX is MUCH better than Labcorp! As far as I know, I have never said that Labcorp is a good lab. If I did, I must have been sicker than I thought! :) IGeneX is the best!
I've heard that foot pain can be caused by Lyme too. Not
sure about eye pain? I personally think that all these symptoms could be Lyme. But I agree that you should be showing it SOMEHOW in your bloodwork.... if you weren't taking antibiotics. Abx definitely will affect your test results. What does your doctor think?
JoAnn
I have a young daughter who had the western block test. She tested positive on bands 41 & 66. I understand 41 is a spiral bacteria infection. What is 66? The doctor said something about cross reactive possibly from a childhood disease. Anyone know about that?
ReplyDeleteBand 41 means any spirochete infection, as you said. Even dental spirochetes. Band 66 is not at all exclusive to Lyme, in fact I think it can be seen with any bacterial infection (see the chart in the post, above). Good luck!
DeleteMy pediatrician called and advised that one of my daughters was positive for 10 out of 10 b.
ReplyDeleteands and doesnt seem real concerned, just advised to give 3 weeks of antibiotics. does this sound right. i am freaking out right now
Donald, I'm so sorry to hear that your daughter has had a positive Western Blot. Please contact this organization for help: http://www.childrenslymenetwork.org/
DeleteDr Charles Ray Jones is associated with them, and I know that he is the top Lyme doctor for kids: http://www.childrenslymenetwork.org/lyme-dr-charles-ray-jones/
How long ago was she bitten by the tick? If it was recently, 3 weeks of antibiotics might do it. Otherwise, she may need a longer course of medications.
I'll keep her in my prayers...
Best wishes,
JoAnn
JoAnn,
ReplyDeleteYou are awesome! This site is really helpful. My 7 year old diagnosed by pediatrician last week. She prescribed 28 days of amoxicillin. Some have said this isn't the correct antibiotic for lyme--but for a child is this the best one?
Thanks! I'm glad the blog has helped.... but sorry to hear about your child being dx with Lyme. Doxycycline is not used on children because of fears of causing stains on teeth, so amoxicillin is considered to be a safe substitute. But a recent study found that tooth staining was not a problem for short courses of doxy. I hope that your little one feels better soon!
DeleteJoAnn
JoAnn, thank you so much for this informative site. I am a Certified Holistic Wellness Counselor with several clients battling Lyme-like symptoms One 17-year-old client presented with a rash on his back followed by unexplained pneumonia early in the summer of 2015 while he was working as a landscaper. Then, a month later he began to have debilitating sciatic pain (all medical testing/imaging has come back negative so now they've diagnosed him with an autoimmune disease) At my suggestion, his parents sought out an LLMD who is treating him now, but IGG and IGF came back 41+ only (Igenex). The LLMD wants to continue treating via antibiotics, saying that he believes the young man does have Lyme, but the parents are questioning this due to the NEGATIVE results of Igenex. So, I am suggesting a Hair Tissue Mineral Test, which will allow us to address the inner terrain, replenishing mineral depletions, toxic metals, and mineral ratios so that the body can be in the best position to heal itself. I've had success with this non-invasive method of nutritional balancing for autoimmune, acute infections and chronic conditions on many occasions, and, as I've been reading up on Lyme, there are some practitioners that have used this very effectively for Lyme infections. If you or anyone else would like more information on this,you can find it here: http://healthybynaturehwc.com/hair-tissue-mineral-analysis/ or here: http://blog.healthybynaturehwc.com/2012/08/03/trace_minerals/ If you have any thoughts on this, I'd love to hear them. Thanks again for all you do!
ReplyDelete- Sue Hughes
Thank you for the information, Sue. I am leaning towards more natural remedies these days, after developing C. diff after 3 years of antibiotics. Take care, JoAnn
DeleteHave a question husband had IGg and tested positive for 45 and 41 could it be Lyme in your opinion or are we barking up the wrong tree.
ReplyDeleteHi Angela,
DeleteIf you read the main post above, bands 45 and 41 could possibly be Lyme, but could be other Borrelia infections and/or Ehrlichiosis. There are other Borrelia spirochetes besides B. bergdorferi: a new one, just discovered, is B. mayonii and it also causes an illness that is basically identical to Lyme, so they are now saying that both B. bergdorferi and B. mayonii cause Lyme in the US. Also, there are also various Borrelia species that cause relapsing fever... these can be transmitted by either ticks or lice. All of those can cause positive bands 41 and 45. Note that the CDC guidelines for a positive IgG Lyme test includes bands 41 and 45. For a CDC positive IgG, 5 of these bands must be positive: 18, 22-25, 28, 30, 39, 41, 45, 58, 66 and 93. In my (non-medical-professional) opinion, you need to make an appointment for your husband to see a LLMD as soon as posssible.
Good luck!
JoAnn
Hi there ~
ReplyDeleteI am very confused. I only came up reactive to band 58 (but only these were tested)
18 KD (IGG) BAND NON-REACTIVE
23 KD (IGG) BAND NON-REACTIVE
28 KD (IGG) BAND NON-REACTIVE
30 KD (IGG) BAND NON-REACTIVE
39 KD (IGG) BAND NON-REACTIVE
41 KD (IGG) BAND NON-REACTIVE
45 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND REACTIVE
66 KD (IGG) BAND NON-REACTIVE
93 KD (IGG) BAND NON-REACTIVE
LYME DISEASE AB(IGM),BLOT NEGATIVE NEGATIVE
23 KD (IGM) BAND NON-REACTIVE
39 KD (IGM) BAND NON-REACTIVE
41 KD (IGM) BAND NON-REACTIVE
So NOT all of the Igenix bands were included in this test. However- I had a few hidden virus pop up positive and quite high as well. I know Band 58 is kind of controversial as it is being recognized more seriously now, and is being seen as responsible for "neurological symptoms" and Borrelia burgdorfer.... BUT historically I read that Band 58 was a predictor of a co infection, so I am not sure I am positive for IGG which I think means antibodies from an old infection could be a reinfection because of Band 58?
I also popped up with:
Parovirus B19 IGG 4.0
Cytomegalovirus IGG 4.59
Mycoplasma Pneumoniae (VCA) AB IGG 3.88
C. Albicans IGG 1.2
(the IGA and IGM were both negative tho)
Anyway..... Could I have LYME? I feel as tho I meet a lot of the chronic symptoms AND coincidentiallly many neuro symptoms (my legs go out - its weird)
Hi,
ReplyDeleteYes, of course you could have Lyme, see my post about why you might have a negative Lyme test:
http://lymetwistontherocks.blogspot.com/2011/06/nine-reasons-for-false-negative-lyme.html
If you do have Lyme, the neuro symptoms are NOT coincidental. That's how I figured out I had Lyme. And my legs would go out too. In my opinion you should see a Lyme-Literate doctor as soon as possible. Here is a link to a Lyme doctor referral service:
http://www.lymediseaseassociation.org/index.php/doctors
I do hope you find someone to help you very soon!
JoAnn
Hi Joann,
ReplyDeleteI'd love your thoughts on my Igenex test results.
IGM
31+
39 IND
41+
IGG
41++
58+
Once I received these results, I used the same blood sample to do the confirmation test #488. That came back negative.
I have a whole slew of Lyme symptoms, but sometimes I'm skeptical they are from Lyme...might they be a result of poor diet and working mommy of 3 boys exhaustion?
Thanks for any insight!
Alexis
Hi Alexis,
ReplyDeleteWell, I noticed immediately that one band that's positive is band 31. If you look at my blog post above, it says:
"31 outer surface protein A (OspA), specific for Bb"
"Specific for Bb" means that ONLY Lyme disease can cause your body to make that particular antibody. Poor diet and working while raising 3 boys does NOT cause one's body to create the band 31 antibody. And not only is band 31 positive, along with band 41, but band 39 "IND", so it is present but it's below the "positive" threshold. Band 39 is also specific to Bb. So in my (non-medical-professional) opinion, yes, I do think that somehow, somewhere, you have been exposed to Lyme disease. Please find a LLMD (Lyme Literate doctor) as soon as possible.
http://www.lymediseaseassociation.org/index.php/doctors
Good luck! You are in my prayers, Alexis.
Best wishes to you,
JoAnn
Can anyone help me with these Igenex reaults I have been diagnosed with LYME neuroborealis and start treatment this week but I am so scared cause Igenex results are ind
ReplyDeleteigm
23+
31 ind
41 ind
Igg
31 ++
39 ind
41 ++
58+
Renee
Hi Renee,
DeleteI'm sorry to hear that you've contracted Lyme. Were you diagnosed by a Lyme-Literate doctor? Your IgG results with 31, 41, and 58 positive are NOT Ind. IGeneX usually considers such a result to be positive, I believe. Even if you had a negative test, you can still have Lyme... see my post on negative Western blots for the explanation:
http://lymetwistontherocks.blogspot.com/2011/06/nine-reasons-for-false-negative-lyme.html
In any case, you are not negative, and have been diagnosed. If you feel that this is in error, please see another doctor for a second opinion. Just be aware that if you see an Infectious Disease doctor, they will of course tell you that you don't have Lyme. That's what they do!
I do hope that you go through with treatment... it is important to try to get better!
Take care,
JoAnn
Hi. I am so confused if I have lymes or not. These are my results. igg band 41 positive. igm bands 41 and 23 positive. since igg band 41 is positive along with lyme-specific igm 23, is igg 41 most likely from lymes or something else? I'll copy and paste my results. beyond confused
ReplyDeleteLYME IGG/IGM AB <0.91 0.00-0.90 ISR Normal Final RN
Negative <0.91
Equivocal 0.91 - 1.09
Positive >1.09
LYME DISEASE AB, QUANT, IGM 0.84 0.00-0.79 index High Final RN
Negative <0.80
Equivocal 0.80 - 1.19
Positive >1.19
IgM levels may peak at 3-6 weeks post infection, then
gradually decline.
IGG P93 AB. Absent Normal Final RN
IGG P66 AB. Absent Normal Final RN
IGG P58 AB. Absent Normal Final RN
IGG P45 AB. Absent Normal Final RN
IGG P41 AB. Present Abnormal Final RN
IGG P39 AB. Absent Normal Final RN
IGG P30 AB. Absent Normal Final RN
IGG P28 AB. Absent Normal Final RN
IGG P23 AB. Absent Normal Final RN
IGG P18 AB. Absent Normal Final RN
LYME IGG WB INTERP. Negative Normal Final RN
Positive: 5 of the following
Borrelia-specific bands:
18,23,28,30,39,41,45,58,
66, and 93.
Negative: No bands or banding
patterns which do not
meet positive criteria.
IGM P41 AB. Present Abnormal Final RN
IGM P39 AB. Absent Normal Final RN
IGM P23 AB. Present Abnormal Final RN
LYME IGM WB INTERP. Positive Abnormal Final RN
Note: An equivocal or positive EIA result followed by a
negative Western Blot result is considered NEGATIVE. An
equivocal or positive EIA result followed by a positive
Western Blot is considered POSITIVE by the CDC.
Positive: 2 of the following bands: 23,39 or 41
Negative: No bands or banding patterns which do not meet
positive criteria.
Criteria for positivity are those recommended by
CDC/ASTPHLD. p23=Osp C, p41=flagellin
Note:
Sera from individuals with the following may cross react
in the Lyme Western Blot assays: other spirochetal diseases
(periodontal disease, leptospirosis, relapsing fever, yaws,
and pinta); connective autoimmune (Rheumatoid Arthritis and
Systemic Lupus Erythematosus and also individuals with
Antinuclear Antibody); other infections (Rocky Mountain
Spotted Fever; Epstein-Barr Virus, and Cytomegalovirus).
Hi,
DeleteI'm not a doctor, but just looking at your results, yeah... you have Lyme disease. If you scroll WAY up on the page and look at my old blog post about Western Blot tests, the ONLY way you can have a positive band 23 is to have Lyme disease. Band 41, whether IgG or IgM, can be present due to any type of spirochetal infection: Lyme disease, syphilis, or even dental infections in your gums caused by spirochetes. But because you have a positive band 23, you likely have Lyme. Please go see a Lyme-Literate doctor (not an Infectious Disease specialist).
Here is a link to a Lyme doctor referral service:
http://www.lymediseaseassociation.org/index.php/doctors
Good luck!
JoAnn
These were my tests recently so confused and am willing to spend 300 on a LLD but what do you think. I have heard yes you have it, then the health dept calls me yesterday and my doc says no you dont it was a false positive??? I am trying to make sense of your page but still confused
ReplyDeleteSED RATE BY MODIFIED WESTERGREN 2 < OR = 20 mm/h MX2
LYME AB SCREEN 1.08 H 0.9 index CB
Index Interpretation
----- --------------
< or = 0.90 Negative
0.91-1.09 Equivocal
> or = 1.10 Positive
The use of purified VlsE-1 and PepC10 antigens in this
assay provides improved specificity compared to assays
that utilize whole cell lysates of B. burgdorferi, the
causative agent of Lyme disease, and slightly better
sensitivity compared to the C6 antibody assay.
As recommended by the Food and Drug
Administration (FDA), all samples with positive or
equivocal results in a Borrelia burgdorferi antibody
EIA (screening) will be tested using a blot method.
Positive or equivocal screening test results should not
be interpreted as truly positive until verified as such
using a supplemental assay (e.g., B. burgdorferi blot).
The screening test and/or blot for B. burgdorferi
antibodies may be falsely negative in early stages of
Lyme disease, including the period when erythema
migrans is apparent.
LYME DISEASE ANTIBODIES (IGG,IGM), IMMUNOBLOT CB
LYME DISEASE AB(IGG),BLOT NEGATIVE NEGATIVE
18 KD (IGG) BAND NON-REACTIVE
23 KD (IGG) BAND NON-REACTIVE
28 KD (IGG) BAND REACTIVE
30 KD (IGG) BAND NON-REACTIVE
39 KD (IGG) BAND NON-REACTIVE
41 KD (IGG) BAND REACTIVE
45 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND NON-REACTIVE
66 KD (IGG) BAND NON-REACTIVE
93 KD (IGG) BAND NON-REACTIVE
LYME DISEASE AB(IGM),BLOT POSITIVE NEGATIVE
23 KD (IGM) BAND REACTIVE
39 KD (IGM) BAND NON-REACTIVE
41 KD (IGM) BAND REACTIVE
Looking at your test results... the Lyme AB Screen is High at 1.08. It's not "positive" but it's high. Then your Western Blot results show IgG band 28 is positive, as is band 41. Band 28 is SPECIFIC FOR LYME. Then your IgM result shows bands 23 and 41 reactive. Band 23 is SPECIFIC for Lyme. So you have positive WB bands in both IgG and IgM that are ONLY caused by Lyme disease. Band 41 being positive means it's a spirochetal infection (Lyme is a spirochete). I do think it's time to see a LLMD, unfortunately.
DeleteGood luck with everything!
JoAnn
Great! I can't sleep over this.I had my thyroid out 2 years ago and thought life would be better now this. Why oh why does a doctors office say I'm false positive with these results an symptoms of lyme. Makes me angry! I don't even remember being bit not that it seems that that matters anymore.
DeleteI'm so sorry... I'll keep you in my prayers! For a good start on understanding why your doctor said it was a "false positive" and why you need to see a Lyme-Literate doctor who probably does not take any insurance, watch Under Our Skin. (((((((((((((hugs)))))))))))))
DeleteThoughts on the following Igenex IgM negative results:
ReplyDelete18 - ++
31 - IND
39 - IND
41 - +++
45 - +
58 - +
83-93 - +
(negatives for all other bands)
On IgG, only 41 and 58 are +. Symptoms for 2 years and nothing...hoping this may provide some answers.
After two years of symptoms and no answers or diagnosis, I sent a sample to Igenex and just received the following even though negative for Igenex and CDC.
ReplyDeleteIgM:
18 - ++
31- IND
39 - IND
41 - +++
45 - +
58 - +
83-93 - +
(all other bands negative)
IgG:
41- +
58 - +
Would love any thoughts as I try to find an LLMD.
Dear Kathryn,
DeleteHere are my thoughts (I'm not a medical doctor):
1. Band 18 indicates antibodies to a fragment of a flagellin (one of the "tails" of a spirochete), from what I've been able to gather. Band 41 also shows the presence of antibodies to a protein that is in the flagella of all spirochetes. Neither of these bands (18 and 41) are specific for Lyme. OK, so you definitely have a spirochetal infection, but we don't know if it's Lyme. That is the first thought.
2. Next, bands 31 and 39 are PRESENT, even though they are technically not intense enough to be even a "+". Those two bands are SPECIFIC to Lyme disease, meaning that ONLY people with Lyme have a positive result for bands 31 and/or 39. But even though your bands 31 and 39 are IND, they are NOT negative... which is an extremely important distinction. It means that there could be (in fact that there are) antibodies against Outer Surface Protein A (OSP A -> band 31) and against a special protein in flagella (band 39) which are proteins ONLY found in Lyme disease bacteria. There just aren't enough of these Lyme-specific antibodies swimming free in your bloodstream to be STRONGLY detected. If they are off fighting the infection as they are supposed to, many of the antibodies are likely "complexed", meaning they are attached to the parts of the spirochetes that they were created to attack. Complexed antibodies cannot be detected in a blood test, but some of the band 31 and 39 antibodies clearly WERE detected, or your results for those bands would be negative instead of IND.
3. Band 45 is not specific for Lyme disease, it is cross-reactive for all Borellia bacteria (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis). It's a heat shock protein that helps the bacteria survive fever. The only bacteria that does not have heat shock proteins is Treponema pallidum, the cause of syphilis. Take-away from this: if you do have Lyme, you may need to be tested for co-infections too, especially Ehrlichiosis.
4. Band 58 is unknown but may be a heat-shock Lyme protein. When this band is positive you should check for viral infections too.
5. Band 83 shows the presence of a SPECIFIC antigen to the Lyme bacterium. This is the antibody that attacks the DNA or genetic material of Borrelia burgdorferi. It is the same as 93, based on medical literature. Laboratories vary in assigning significance to the 83 versus the 93 band. Your result for this band is POSITIVE.
My conclusion is that, because of your symptoms as well as your Western Blot test, you very likely do have Lyme disease. You definitely have a spirochetal infection (shown by bands 18 and 41). You have a POSITIVE result for band 83-93 plus ALMOST positive (IND) results for bands 31 and 39. Those three bands are only seen in Lyme disease.
Of course I don't know what symptoms you've had, but I do know that you've had 2 years to think about your symptoms and compare them to the lists of Lyme symptoms on the Internet, so I assume that you have Lyme disease symptoms (there can be dozens and dozens of different Lyme symptoms, especially if you've had it for a long time).
That's what your test results say to me, as a rank amateur who does not have a degree in medicine. I am very sorry to say that though... I hate knowing that even one more person is having to deal with Lyme.
You will be in my prayers. I hope you find a GOOD Lyme doctor, please look for one ASAP. Here is the link that I usually provide to people for LLMDs:
http://www.lymediseaseassociation.org/index.php/doctors
Take care,
JoAnn
First, THANK YOU for this very informative blog. What a wealth of information!
ReplyDeleteMy symptoms (mostly foot and leg nerve pain but also many other migrating symptoms) started 4 years ago.
I just received my IGeneX test that I convinced my GP to order for me and I'm pretty sure she doesn't know how to interpret it however I have an appt with an LLMD in a month but I'm wondering if you have any insight into the results...
IGM
30 - positive
41 - IND
IGG
31 - IND
41 - positive
Thank you for any thoughts you have concerning these results!
Hi Anonymous,
DeleteSorry to hear about your symptoms... migrating and evolving symptoms are very common in Lyme disease.
Your IgM results are very interesting, because that positive band 30 is ONLY seen in Lyme disease. The band 30 antibody attacks the OspA substrate binding protein of the Lyme disease spirochete. With that result, your IND band 31 plus your IgG results and your symptoms, I'm certainly glad that you are seeing a LLMD soon.
Best wishes to you, you will be in my prayers!
JoAnn
Thank you so much for your reply and your prayers, JoAnn! I really appreciate your response as I wasn't really sure if band 30 was a Lyme-only one so thank you for clarifying that. I apologize for double posting my question as I didn't think that it had gone through - feel free to delete my second one. Thanks again!
ReplyDeleteErin
JoAnn,
ReplyDeleteI really appreciate the clarity of your post. I now better understand my recent test results. I live in a tic-infested area and a few days after I walked through a grassy field I noticed a deep red rash about 2-inches in diameter (not a bulls-eye). I asked for a Lyme test and it came back 1.25 (pos) on the screen and reactive only on the 66 KD IgG band. ...therefore negative. I learned from your writing that that one is not specific for Bb, but I am concerned that I took the test too soon (3 wks after the rash). My doctor does not want to prescribe another test. I do not have other symptoms, but I have seen how devastating Lyme disease can be. What would be the harm in taking a course of antibiotics just in case? I have another appointment to try to convince them to at least give me another test. Is this something that I should take to a specialist? I do not want to have to wait for worse symptoms to show up. I would appreciate your opinion.
Thank you,
Debora
Hi Debora,
DeleteNot all Lyme rashes look the same. The fact that you had a (presumably?) round red rash after being bitten AND your ELISA was positive means you may have Lyme disease. Do you have any of the usual Lyme symptoms? Such as extreme fatigue, joint pain, headache, etc, etc. Here is a link to a list of Lyme disease symptoms:
http://canlyme.com/lyme-basics/symptoms/
First, I think that you need to be tested again, but you need to use a lab that focuses on Lyme disease, such as IGeneX. Labs such as IGeneX have tests which are MUCH more sensitive than those of standard labs (like LabCorp, etc). Also, IGeneX has co-infection tests specifically for certain parts of the country, because there are different co-infections on the West coast than the East coast. You really need to be tested for co-infections too!
IGeneX is in California. There is at least one other lab that is good, but I can't recall the name at the moment... I believe they are on the East coast somewhere. I remember IGeneX because they are the lab that I used and that most of my friends with Lyme used. You may go to their website (igenex.com) and order a test kit. They do not require payment until you send the sample in, so they ship the kit to you for free. But when you send in the sample you will need to pay up front for the testing. When I was tested in 2010 it was on the order of $400+. Your insurance will hopefully reimburse you for at least part of the expense. Here is their Facebook page with helpful links: https://www.facebook.com/igenexlab/?fref=ts.
Read the "What tests to order" and the "Forms and sample requirements" sections carefully... you will need to print out forms for your doctor to fill out and sign.
Good luck to you! And I really hope that you DON'T have Lyme disease!
JoAnn
Hi everyone,i have been sick for about 3 1/2 years. My first attack, i got to where i could hardly walk and was having chronic migraines, and joint pain in ankles.they did check me for tick fever then but i was negative. Plus all this crazy stuff going on in my mind and body.I just recently had a w.blot test- & i was negative in all bands except band 23 KD (IGM) REACTIVE A .... 3 yrs ago i started having thyroid issues also.. so My Dr just up'd my dose of thyroid meds and said we would see if my chronic pain and craziness going on in my body cleared up..its been 3 weeks and nothing has changed, my hand (finger) joints hurt so bad i can barely stand the pain.. i see my Dr again in 2 weeks. any recommendations to talk with her about.. any advise is appreciated..
ReplyDeleteJeff, my heart really goes out to you. Is your doctor a LLMD? If not, please find a real LLMD, there are links in many of the messages above to help you do that. You do need to point out to any doctor(s) that you talk to, that band 23 can only be positive if you've been exposed to Lyme disease. Yes, I know that the current criteria say that more than one band is needed. But that particular band should not be possible unless you have Lyme. Now, remember, I'm not a doctor, but I do believe those who are doctors who say that this is a Lyme-specific band. The symptoms that you list are totally consistent with Lyme disease as well. Lyme triggered a number of autoimmune diseases in me, including lupus. So it could very possibly trigger your thyroid issues too.
DeleteGood luck with everything!
I will pray that all goes well for you and that you are able to find someone to give you the proper medical treatments.
Take care,
JoAnn
So even if you have a "negative" Western Blot but band 39 is present, then you have Lyme? This was not an IgeneX Western Blot though. Could you help interpet for me this Western Blot? I'm so confused.
ReplyDeleteB. Burgdorferie IgG: Negative with no bands present
B. Burgdorferie, IgM: Negative - band 39 KDa is present
Well, of course, here is my usual disclaimer: I'm not a physician. BUT, from what I've read about the Western Blot, band 39 shows up only when you have Lyme disease. That said, most doctors will tell you that you DON'T have Lyme with only one positive band, therefore you MUST see a LLMD if you wish to be properly diagnosed and treated.
DeleteI believe that one band gives you a high-priority to-do list: (1) see a LLMD, (2) take the IGeneX Western Blot test.
The IGeneX WB is much more sensitive that the standard WB done by labs such as Labcorp, for example, so IGeneX may pick up more bands. And a LLMD would be able to help you figure out if you do have Lyme or not. You should be tested for coinfections as well. Here is the link that I usually provide to people to help them find LLMDs:
http://www.lymediseaseassociation.org/index.php/doctors
Good luck with everything!
JoAnn
Thank you, JoAnn
ReplyDeleteThis is very helpful, and you're incredibly kind to help those who ask questions. Thanks so much for posting! God bless, from one Lymie to another!
ReplyDeleteGod Bless you, too! :) I'm glad it's been helpful to you.
DeleteJoAnn
I have been having a lot of pain for years.. so many that I'm wondering how long it really has been... I was just recently diagnosed Positive Lyme... I don't understand my numbers to well but getting better thanks to this blog.. In 2002 I suffered sever vertigo out of no where... had it ever since.. then in 05 I cracked my L4 vertebrae in a car crash.. in 2006 maybe I had severe sciatica. Woke up with it.. for two months then it went away over night with the help of ten Vicodin and five Ibuprophen 800s a day just to get to work and home.. couldn't get a hold of the doctor for a while. Then my knee would hurt.. gout like symptom in my big toe... Ankle pain so bad the weight of the sheet in bed would be too much.. now my neck since Sept is so stiff and sore and this happened same time last year... the doctor that did the test said 21 days of doxy is plenty.. I still am in a lot of pain.. My results were 41 KD IgG reactive..58KD IgG Reactive then 23 IgM reactive and 41 KD IgM reactive B. Burgdoferi IgM positive and Lymes IgG 1.56 .. she thinks I just got this like a month ago (I don't believe it) I've been having a hard time with short term memory..etc.. for a couple years now.. told the PCP I had a tic bite in 2014 thye never tested me.. then went back with another insect bite... never tested... never had a bulls eye just a red blood looking small blotch on my neck smaller than a pencil eraser. But I use to go camping a lot years ago... so now wondering.. I'm hurting too bad and looking for a Doctor who can help me.
ReplyDeleteWow, I'm sorry you're going through all this! Yes, it sure sounds like Lyme, although obviously the car accident didn't help. But Lyme targeted my spine, and I've had tons of pain in my back for years. I had vertigo too. For a while the back pain plus vertigo was so bad I had to be in a wheelchair if I left my house. It's better now, but the chair is still necessary if I have to walk very far. Vertigo, back pain, neck pain, joint pain, etc... those are all typical. I developed fibromyalgia from the Lyme. Fortunately Lyrica and Cymbalta keep it tolerable (mostly) now. But before I started those meds sometimes it would hurt so bad just to turn over in bed that I'm sure the neighbors could hear me screaming. Sometimes it hurt just to breathe.
DeleteAs you probably read in the post, above, band 23 is specific for Lyme. Just that band, along with your other tests and symptoms mean that you have active Lyme. 21 days of abx is NOT long enough! Especially for late stage Lyme.
Please find a LLMD as soon as possible! Here is a link that may help you:
http://www.lymediseaseassociation.org/index.php/doctors
If it doesn't help you find a LLMD, post again telling me what city and state you are in (or just county and state if you prefer), and I will try to help.
Be aware that most insurance will fight you, they don't want to pay for months or years of expensive treatment, especially if you require IV abx. I was spending $20,000 a year on IV equipment, etc, while I was on abx. But the IV Merrem finally made a difference. I had to do it 3x a day, and learned how to access my own chest port, but it was worth it, because I got my brain back. At least partially. :)
Praying for you to find the right doctor and get some relief! Sometimes if the doctor codes the illness as a widespread infection (general) rather than specifically Lyme disease, the insurance WILL pay for IV abx. Talk to your LLMD about this after you locate him/her.
Take care,
JoAnn
Sorry I would add my name but I'm not sure how to do that. Thanks in advance for any info .
ReplyDeleteNo problem... please see above for my response.
Delete((((hugs)))
JoAnn
Hi JoAnn,
ReplyDeleteI have been sick forever. I have fought this for at least over 20 years. My test for Lyme is IgG 41 positive, IgG 93 positive, rocky spotted fever 1:64 High, And mycoplasma pneumonia Ab IgG .79 High The doctor is using CDC criteria but he says he is not sure. After reading your posts I believe I have Lyme. The next question is after reading a lot of literature there doesn't seem to be a solid treatment. I already have stomach flora issues so antibiotics are not appealing to me and from what I've read they don't really work. The Cowden protocol looks like it is complicated. Do you have any new recent literature or treatments that could rid this horrible infection that has stolen so many years of my health and life?Thanks! Jan
Hi Jan,
DeleteI definitely feel for you! Is your doctor Lyme-Literate (LLMD)? That makes a big difference.
Here is a link to an article about newer techniques, but you'll notice that they are still using antibiotics.
http://www.nojunqueliving.com/2013/09/01/why-i-see-doctors-in-seattle-and-why-i-dont-take-antibiotics-for-chronic-lyme/
I did get much better after 3 years of abx (I'm no longer in my wheelchair), but I am still sick, as the infection triggered quite a number of autoimmune diseases plus fibromyalgia. Those have not gone away. Still, I enjoy being able to go to the store without the wheelchair, even though I get tired quickly. I think one thing that made a huge difference for me is that I was on IV abx for nearly a year of the 3. The IV Merrem definitely made a HUGE difference with my neuroLyme. I was under the care of Dr Steven Harris in Redwood City, CA plus a naturopath who worked with him.
I stopped the abx when I developed C diff. I did and still do take daily doses of probiotics, including Saccharomyces boulardii, which is very good at preventing C diff from recurring. But even though I had C diff I do not regret taking antibiotics. They gave me back at least part of my brain! I can think so much more clearly now... it's a difference of night versus day.
The LLMD who has some of the most innovative treatments (many of them do not use abx) is the doctor in Seattle who was featured in Under Our Skin: Dr Klinghardt. There is also a Dr Susan Marra in Seattle that I've heard good things about. I also recommend Dr Harris, in Northern California. In any case, I don't know what part of the country you live in so these particular recommendations may not be helpful. I would urge you to see a good LLMD though, wherever you live!
Best wishes... you are in my prayers!
JoAnn
Hi: My IgG Western Blot came back with three positives: P58, P41 and P23. The IgM for P41, 39 and 23 were negative. Is this Lyme and, if not, what cross-reactive disease could it be
ReplyDeleteHi,
DeleteIn the post, above, you can see that band 58 is an unknown band, while band 41 shows up for all spirochetal infections. But band 23 is *specific* for the Lyme disease spirochete. That means that only Lyme disease causes your body to produce that antibody. Unfortunately I can't diagnose you with Lyme disease, because I'm not a doctor.
Do you see a LLMD yet? If not, you should really consider finding a Lyme Literate doctor near you (if possible). If there are none near you, you may need to travel to see one. By the CDC criteria, you do not have Lyme. But LLMDs are trained to diagnose Lyme based on more than just your bloodwork. They want to hear about where you have lived, where you have visited, whether you are an outdoors-y person or not, and ESPECIALLY about your symptoms. So you do need to really get in to see a LLMD, if you haven't done this already.
Forget about seeing an Infectious Disease doctor; 99% of ID doctors are only going to look at your bloodwork, and if it doesn't fit the CDC criteria, then they will tell you you don't have Lyme, no matter what your symptoms are.
Good luck with everything!
JoAnn
Thank you --I'll see if I can find one. I live in Southwest Ohio. Don't remember ever being bitten by a tick. I had a large rash outbreak in 2014 that was on my waist, neck and legs but assumed it was poison ivy. Very itchy, had to get prednisone to calm it down. I had mono as a kid so wonder if the cross-reaction is EBV.
DeleteYou might try getting in touch with people who run this Facebook group: https://www.facebook.com/OhioLymeDiseaseAssociation/
Deletedo I have lyme
ReplyDelete18 kd IgG
23 kd Igm
93 kd Igg
Hi Anonymous,
DeleteI assume that you mean that those bands you listed are positive? Remember, bands can be negative, indeterminate or positive. You also did not mention which symptoms you might be having... why did you get tested in the first place? Do you have any symptoms.
If you check the table in the post, above, it will tell you that band 18 is caused by a flagellin fragment, band 23 is SPECIFICALLY CAUSED by the Lyme spirochetal bacterium, and probably band 93 is specific for Lyme, as well. Specific for Lyme means that you will ONLY have a positive band if you've been exposed to the Lyme bacterium. This information comes from Lyme professionals, not me. Even though I am not a doctor, I think that the presence of those two bands gives you an excellent reason to make an appointment with a Lyme-Literate doctor (LLMD). Have you seen a LLMD yet? Please do find one... a "standard" doctor and/or an infectious disease doctor will likely tell you that you do not have Lyme, because you only have 2 of the CDC-required bands for IGG that are positive, but by their standards you need 5 out of 10 IgG bands, which are listed above. Also, you only have one band from IgM that is CDC-required, but you need two to be considered positive for Lyme. So you are CDC negative. If you did your test at IGeneX, they would say you were positive, because their criteria are different. If you DIDN'T do your test at IGeneX, you should. Their test is significantly more sensitive than the tests from your usual commercial labs.
Does this help?
JoAnn
yes they do state reactive. I question my neuro about it, and he assumed I was previously test but I was not. So questioned my primary and she ordered test.
DeleteI have back and neck problems from many years ago. but also so many other things going on with legs and arms from back/neck issues. such as tingling numbness and pain in arms (which I have in the past been treated for tendonitis) as you can see a lot going on,But completely exhausted and worn out all the time. I never questioned lyme b4 as I am a stay out the woods type of girl. I also questioned if this could be transmitted sexually as my boyfriend was diagnosed last year
YES, Lyme CAN be transmitted sexually. Many other ways, too. See the following:
Deletehttp://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=996
You do not have to go in the woods to get Lyme. You can get it in your own backyard, or even in your own bedroom. I'm sorry that you're going through this...
The best of luck with everything!
JoAnn
PS Standard medical practioners will tell you "no" regarding Lyme being transmitted sexually. LLMDs know better.
DeleteHi , after 3 years of weird symptoms, starting with different migrating pains , ears, bones, neuropathic pain. Since 2 years, I' m now bless with all type of paresthesia , internal body vibration and cranial nerve numbness as well as feeling dizzy, nausea and tired and now muscle tremor on and off. According to all doctors and specialists , I'm fine, so are all my tests. I had an IgeneX WB done in august 2017 and it came back IGG. 41 ind and IGM 31 ind. 41+
ReplyDeleteI think I might have Lyme .... but what if we are missing something else? In your opinion, is the IgeneX enought to send me on my way to a Lyme doctor?
Hi,
ReplyDeleteIn the last 3 years I have been dealing with migrating pain going from ears to bone to neuropathic pain. Since 2 years, most of my symptoms are neurological: Paresthesia, internal body tremor or vibration, numbness, and weird feeling in my head ( hard to describe), constantly tired, and the new addition to the list is a muscle twitch on and off. I had an IgeneX done in August 2017 ( IGG 41 Ind. IGM 31ind 41+).
I have seen countless doctors and been through a lot of testing without any diagnosis, I'm starting to think Lyme. In your opinion and experience is my IgeneX test enought to travel down( no Lyme doctor in my country) and see a Lyme doctor?
Justin,
DeleteI'm sorry to hear about what you're going through. I can relate very well to all of those symptoms.
In my opinion (and I am not a medical professional), your symptoms alone are enough to make me think that you should visit a Lyme Literate doctor, even without your WB. The fact that band 31 shows up, however faintly, is definitely a concern, as band 31 is highly specific for Lyme.
Are you planning to travel to the US to see a Lyme doctor? If so, please do make sure that you make an appointment with a LLMD, NOT with an Infectious Disease doctor. There is a big difference between those two types of doctors... and only a LLMD will give you a clinical diagnosis of Lyme disease and work with you even if your WB is "negative". ID doctors generally ONLY look at blood test results, so you would likely be told you are fine by one of them.
Good luck!
JoAnn
Hi JoAnn- you are wonderful to be sharing all this information and guiding people to resources. I was just diagnosed a couple weeks ago and would just appreciate your insight and experience on a couple of things. I know you are not a doctor BUT .....your research and experience are invaluable. I will try to make this short:
ReplyDeleteI am 61- have had Lyme symptoms for probably 30+ years. Maybe even 40. The only tick bite I know of was 35 years ago and it was a big fat tick-on my head so no visible rash. I am very outdoorsy and hike all summer all over the country and run in the woods on poorly maintained trails, especially last summer. Last October I reacted to yard work with a rash which is not unusual but then it spread over my body. Derm dx scabies and I took the two doses of Ivermectin- no help. Then she said go gf even though my blood work for gluten was normal-no help. Discovered histamine intolerance during my excessive googling for relief and that diet def made an impact. But the theory is that there is underlying dx that pushes you over the edge so I went to an allergist/immunologist who is known here in Cincinnati as an expert in mast cell disorders. He agreed to test for that and I asked for Lyme and Sjogren's as well. I definitely feel I have Sj as my mother had all the symptoms of it but I have test neg 2x for that.The Lyme results were positive for IgG 39, IgG 41, IgM 23. The Labcorp report stated IgM positive and IgG negative. When my blood was drawn, I did not know I had the flu (I knew I didn't feel well) -would that affect the numbers at all? When my trouble started with the rash, I also had trouble start with a toothache which eventually required a root canal and now I feel that the tooth is going to need pulled as it still hurts. I know there are dental spirochetes- could this be in play? I guess I am looking for a way out....Thank you for your help. Oh- the doctor says my results indicate acute infection.
Hi Kay,
DeleteI'm sorry to hear about all of your health issues. Being outdoorsy is a good thing, except that it does increase your exposure to ticks. Unfortunately, Lyme could account for all of your symptoms by itself. It's called the Great Imitator because it can imitate the symptoms of so many different conditions, especially autoimmune diseases like Sjogrens or Lupus. The only way you can tell whether or not you do have an autoimmune disease in addition to Lyme is if your body is producing antibodies which are specific to that particular illness. For example, I thought all of my problems were due to Lyme until my doctor told me that my bloodwork showed anti-double-stranded-DNA autoantibodies. That's a finding which is ONLY possible if a person has lupus. My lupus was likely triggered by the Lyme disease. A viral infection can affect the results of some bloodtests for antibodies, so I suppose it's possible that your results were affected by the flu. As far as the dental spirochetes go, they could cause you to show a positive band 41 on the Lyme Western Blot test, because that just indicates a spirochete, but they could never cause the positive bands 23 or 39... those bands can ONLY be caused by the Lyme bacterium. Bands 23 and 39 are very specific for Lyme disease.
My suggestion is to get another Western Blot done through the IGeneX lab in Northern California. Their test is far more sensitive and accurate than that given by Labcorp. You will need a doctor who is willing to write an order to do this test, and you will probably need to pay for it out of pocket, and get reimbursed later by your insurance. But I think this is very important if you really want to know what's going on. Are you seeing a Lyme Literate doctor (LLMD)? That is extremely important, not only for dx but for tx. DO NOT SEE AN INFECTIOUS DISEASE SPECIALIST. Read my blog post above for the reasons why a LLMD is much better equipped to make a dx of Lyme than an ID doctor. Hopefully you will get your dental infection treated as well. The antibiotics prescribed for Lyme will also treat dental infections.
I also believe that anyone with any familial tendencies to develop autoimmune diseases should be gluten free, whether or not their lab tests indicate they have gluten issues. You may not notice a difference in how you feel, but it will reduce the likelihood that you will develop autoimmune diseases.
Good luck!
JoAnn
Thanks so much- I made an appt with an LLMD and she does very comprehensive testing in addition to the IGeneX blot.
DeleteYou're very welcome... take care, I will keep you in my thoughts and prayers!
DeleteJoAnn
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ReplyDeleteHello JoAnn,
ReplyDeleteCan't say thank you enough. Trying to find the Advanced Lab on line, but link says "not found,and no luck with Google search. Is this link right (working for U)? http://www.advanced-lab.com/spirochete.php
Dear Anonymous,
DeleteYou're right... the Advanced Lab website appears to have disappeared. :( No, the link does not work for me either.
Sorry!
JoAnn
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ReplyDeleteJoAnn,
ReplyDeleteThank you for the useful info and support. I was bitten in April 2017. A doctor removed the tick and did not prescribe anything. Luckily I had an annual blood test and they did test for Lyme. The result was even for CDC positive within 3 weeks of bite. It was Quest Lab.
IgM
23 reactive
41 reactive
IgG
66 reactive
I was 2 weeks on Doxy prescribed while on Vacation in Europe. Then my GP told me that I need to take 30 day Amoxicilin as the Doxy was not enough for 2 weeks.
I found a naturopath specialiazing in Lyme and he prescribed Minocycline, Rifampin and Tinidazole for 3 months. He tested for Babesia, Ehrlichia, Bartonela Candida. Only the Candida IgG was 1.4 a little high. I felt really bad after all that medication. Since then I have been having migraines and shortness of breath for 1 year. I just did a new test at quest and the result is below
IgM
41 reactive
IgG
45 reactive
58 reactive
66 reactive
I would appreciate if you can help me. My plan is to do another test at IgeneX as 31 and 34 are excluded at Quest. They have new test too that is better than the Western blot-the Immunoblot. I am not clear if these bands could be in my system almost 2 years after the Lyme, because of other infection or simply Lyme again. Also the 41 IgM is pointing at infection too. Thank you.
I hope that I'm wrong but you may not have gotten rid of all the Lyme in your system. I don't think that the medicines would be causing you to feel bad two years after you stopped taking them. It would more likely be Lyme and/or other tick borne disease.
DeletePlease see a Lyme Literate doctor again and don't just get your GP to read a standard WB again. I think that IGeneX is a great idea.
I am concerned that things may get worse for you if you wait any longer to be seen by a Lyme specialist. If possible, see an MD rather than a NP.
Good luck,
JoAnn
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ReplyDeleteigM p39 postive and igg p41 positive (with possible lyme symptoms) ... all else absent. I'm thinking that p39 may indicate lyme since it's strictly a lyme marker right? even though the igg for p39 isn't positive? And even though it doesn't meet the 'criteria' for a positive?
ReplyDeleteHi Melissa, yes, people can definitely have Lyme disease without their Western Blot test meeting the criteria for being "positive". Having a positive band that is Lyme specific is a strong indicator, as are Lyme symptoms. But only a Lyme Literate doctor can tell you for sure. Have you seen a LLMD yet? I would really recommend that you do so as soon as possible... that way you can get started on treatment.
DeleteGood luck!
JoAnn
I tested positive for Lyme Disease but think I had an undiagnosed case and got it again...I had that same rash three years ago..and the doctor never treated it just gave me an ointment...three years later I get a disseminated bullseye rash and finally get tested...Is it possible to get Lyme on top of Lyme? I have my results:
ReplyDeleteLyme IgG/IgM AB 3.13 High
IgG abnormal for P39, P23 and P18
IgM abnormal for P41, P39 and P23
Lyme Disease Ab., Quant., IgM 7.27 High
what does all of that mean? Please help.
Dear Anonymous,
DeleteI'm so sorry you are dealing with all of this!
Yes, unfortunately you can get Lyme more than once. Your test results show that you may have had Lyme for a while, since your IgG bands 39 and 23 are definitely very specific to Lyme, as are the same IgM bands. NOTE: I say this as a layperson; I'm not a medical doctor. You need to see a Lyme Literate doctor, aka LLMD, right away. In which state do you live?
JoAnn
Hi I'm trying to understand my western blot test results. Done at quest.
ReplyDeleteMy test say negative
IgM no bands reactive
IgG 18 & 58 are reactive.
Can you give me some advice on these results.
Thank you in advance.
Unfortunately all I know is that band 18 is likely a flagellin fragment (I don't know if it's specific to Lyme), and 58 was not a known Lyme band as of 2011. I could look it up online, but so could you.... I recommend that you google western blot band 58 and see if any new papers come up at PubMed. Best wishes to you!
DeleteJoAnn
Hello JoAnn, Looking for some feedback from you:
ReplyDelete41 KD (IGM) Non-Reactive
93 kD (IgG) blank
39 KD (IGM) Non-Reactive
23KD (IGM) Reactive
Lyme Disease AB (IGM), BLOT Neg
93 KD (IGG) Reactive
66 KD (IGG) Non-Reactive
58 KD (IGG) Reactive
45 KD (IGG) Non-Reactive
41 KD (IGG) Reactive
39 KD (IGG) Non-Reactive
30 KD (IGG) Reactive
28KD (IGG) Non-Reactive
23 KD (IGG) Non-Reactive
18 KD (IGG) Non-Reactive
Lyme Disease AB (IGG), BLOT Neg
These were my results after a trip to Northern Minnesota for a couple weeks in 2016. Came home and noticed the 'bulls-eye' on my inner thigh. Within 24 hours I had a severe debilitating headache and joint pain. Went to the ER and was lucky enough to have a young doc from the east coast. He immediately started me on antibiotics for 6 weeks and told me to check in with my GP. GP ordered the blood work. Told me it was negative. This was after I missed 6 weeks of work because the actual act of lifting my head or moving in any way was exhausting and painful in my joints.
It's been 3 years, I have been to several doctors as my symptoms are horrible most of the time. From brain fog, hot/cold, whole body fatigue, mood swings, crazy huge hives that split my skin, poor vision, weight gain, over-night reactions to food that I now have to carry epi-pens (at 45yo!!) etc etc. The list is never ending it seems on issues.
All blood work comes back normal, plus being in Southern Nevada, trying to get a doc to listen to whats going on and take me seriously, is impossible. I've been told every single time I have asked "is it possible that Lyme is the problem" and the answers are always 'no, it's in your head, there's nothing wrong with you, your blood work is fine'. The last 2 even refused to re-test me for Lyme.
I have an appointment next week with a Lyme specialist (Infectious disease doc) that I found through Lyme.org in Las Vegas. I am hoping that someone will actually listen to me. Reading through this entire blog I am having my doubts about that and am thinking maybe I need to find a LLMD? I did a bit of research today and there isn't any in Nevada at all. Would you know of where I can look for an updated list?
I can't express the frustration. This year has been extremely difficult with symptoms increasing heavily and my mental ability to handle it all is rough.
You almost certainly have late-stage Lyme. I say this as a person who also has late-stage Lyme, but I am NOT a medical doctor, of course. I have or had many of the same symptoms, and ultimately lost my job due to Lyme. I am now on disability.
DeleteYes, you need to see a LLMD. Do not bother with an infectious disease doc UNLESS you find out that he or she is also a LLMD. No, there probably aren't any LLMDs in Nevada, but you are right next door to California and there ARE good LLMDs in California. I was seeing a good one in Redwood City, CA, and there are lots more. I think there is a Facebook group for people from California with Lyme; I would try to get some names (probably through private message, since they try to keep the names of LLMDs private and off of public forums). It doesn't hurt to look for a LLMD in Nevada, try a FB forum for people with Lyme in Nevada, too.
The reasons I say you have late-stage Lyme disease: you had a bulls-eye rash, you have a positive IgM band 23, you have positive IgG bands 30, 41, 58, and 93. Bands 23, 30, and 93 can only be positive IF YOU HAVE LYME. You can only have a bulls-eye rash IF YOU HAVE LYME. Period, end of story. Plus you have tons of CLASSIC LYME DISEASE SYMPTOMS. I'm guessing that the only antibiotics you were given were the 6-weeks worth you got 3 years ago? Obviously that was insufficient... you still have Lyme, based on your symptoms.
Lyme is very difficult to get rid of once it gets deep into your tissues. You also have neurological symptoms, which means neuro-Lyme; this only happens in the later stages after the spirochetes are well established and have penetrated the brain and/or spinal cord.
Unfortunately the doctors you've seen are following the CDC/IDSA line and cannot help you. Only a real LLMD will help, and unfortunately they are frequently hard to find and can be geographically removed from you, so that you have to travel to see one. I was on antibiotics for 3 years, including a year of IV antibiotics. The IV antibiotics gave me my brain back; they beat back the neuro-Lyme and my neurological symptoms are pretty minimal now. A "regular" doctor or an infectious disease doctor would never have prescribed 3 years of antibiotics! But that's what I had to have to get better. I am not back to normal but I am better. I am no longer in a wheelchair, I can think, I can do math in my head again.
Please do try to see a LLMD. I will keep you in my thoughts and prayers.
JoAnn
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ReplyDeleteHi Joann, thank you for all the useful information here. Im waiting on an appt now with a LLMD in NYC. My Igenex results were IGM all negative. IGG 31++ and 41+, my symptoms are joint pain in most joints, feet/hand pain. Fingers/toes nerve pain. Was wondering what ur thgts are on test results.
ReplyDeleteHi, I'm glad you have an appt with a LLMD coming up because band 31 is Lyme-specific... you cannot have that antibody in your blood without being exposed to Lyme. Classic symptoms too.
DeleteTake care!
JoAnn