My Life with Multiple Chronic Illnesses, Including Lyme Disease

Saturday, January 1, 2011

Western Blots - what do all of those darn bands MEAN???

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)!

First of all, you should know that the Western Blot blood test does not actually test for the presence of Lyme disease.  It tests for it indirectly by looking for antibodies made by your own immune system against the spiral-shaped bacteria (spirochetes) which cause Lyme disease.

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.):

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!!!!!

73 comments:

  1. Hi JoAnn -
    Lyme 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

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  2. 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.

    However, 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!

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  3. 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.
    Recently (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.

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    1. 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.

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  4. I 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.

    In 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!

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  5. 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.
    Confused in NY

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  6. Dear 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.

    That 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!

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  7. Hi JoAnn,
    Yes, 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

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  8. 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!

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  9. Hey Joanne - thanks

    I 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 ?

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  10. Anonymous,

    Of 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!

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  11. 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.
    c.

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  12. 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.

    I 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!!

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  13. IGM. DO U KNOW OF ANY OTHER DISEASE THAT THAT #23 WOULD OR COULD ALSO BE? THANKS FOR ANSWERING ME.
    C

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  14. I found the following list of possible Western Blot cross-reactivities of various bands with other pathogens at LymeNet Europe:

    B. 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.

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  15. 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.
    They are sending me to rheumatology, but I'm unsure if I should purse Lyme ..or ???

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  16. Jewell, do you mean that you had "IND" on bands 39 and 41? Which band or bands were indeterminate?

    41 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?

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  17. 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.
    Symtoms 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

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  18. Well, your symptoms certainly fall within the Lyme disease range!!

    But 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!

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  19. 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)!

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  20. 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...

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  21. 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

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  22. Nikerik, 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.

    I 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!!

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  23. Hi JoAnn-
    I 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...

    ReplyDelete
  24. Anonymous, I'm so sorry I missed your comment/questions! My brain and vision don't work very well sometimes... :(

    I'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!!

    ReplyDelete
  25. 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

    ReplyDelete
  26. Lynn, 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.

    Everyone'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!

    ReplyDelete
  27. 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.....
    Thanks

    ReplyDelete
  28. 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.

    In 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!

    ReplyDelete
  29. 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

    ReplyDelete
  30. Thanks 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!

    ReplyDelete
  31. Lynn, yes, I will be praying for you! Good luck!

    ReplyDelete
  32. And 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!

    I'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!

    ReplyDelete
  33. 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

    ReplyDelete
  34. I 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.

    Please 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!

    ReplyDelete
  35. It's Lynn again,

    What 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?

    ReplyDelete
  36. 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.

    That 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!

    ReplyDelete
  37. 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.

    While 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!!

    ReplyDelete
  38. 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!

    ReplyDelete
  39. JoAnn 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?

    Thanks!

    ReplyDelete
  40. 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.

    I 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!

    ReplyDelete
  41. Thank you for your input. Happy Thanksgiving to you too!

    ReplyDelete
  42. JoAnn, I had IgG band 41 retested a few days ago and it came back negative. Are false negative's even possible?

    Which test result would be more accurate: the negative or the positive IgG band 41?

    Do I try to retest for a 3rd time?

    ReplyDelete
  43. 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.

    These 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!

    ReplyDelete
  44. 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.

    During 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!

    ReplyDelete
    Replies
    1. Dear Anonymous,

      Your 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

      Delete
    2. 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.

      I 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.

      Delete
    3. If you have had Lyme long enough to cause neurological damage, 2 weeks of doxy won't do anything for you.

      I 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

      Delete
  45. 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?

    ReplyDelete
    Replies
    1. Did 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

      Delete
  46. JoAnn,

    I 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.

    ReplyDelete
  47. 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!

    Can 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

    ReplyDelete
  48. 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:








    Component 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????

    ReplyDelete
    Replies
    1. 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.

      You 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

      Delete
    2. 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!

      Delete
  49. Hello,
    I 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.

    ReplyDelete
  50. Hi Jeff,

    You 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

    ReplyDelete
  51. Hi JoAnn,

    First, 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

    ReplyDelete
  52. 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?

    ReplyDelete
    Replies
    1. Well, this is from my post, above:

      "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

      Delete
  53. Hello Joann
    what 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?

    ReplyDelete
  54. Hi ccrew,

    Those 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

    ReplyDelete
  55. 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.
    In 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

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    1. Hi Becca,

      So 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

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  56. JoAnn, Thanks for you quick reply...You have confirmed to me that were on the right track now.
    I`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:-)

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    1. Hi Becca,

      From 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

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  57. Hi Joann,
    After 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

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    1. 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.

      But 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

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  58. Hi JoAnn,

    Thank 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

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    1. 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!
      JoAnn

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  59. JoAnn,
    I 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

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  60. 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.

    this 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

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    1. Hi Anonymous,
      Sorry 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

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