Well, this is a complicated topic and I could probably go on about it all day, except for the fact that (a) my fingers are very swollen and painful today because I'm having a rheumatoid arthritis flare, and (b) my eyes are going out on me (blurry vision and double vision from the Lyme disease). So I'll make this fairly brief.
Lyme can mimic MANY other diseases, including lupus, ALS (Lou Gehrig's disease), and MS. Unfortunately, it can also trigger autoimmune diseases, particularly in those who already have the genetic tendency to develop them. So you could have Lyme pretending to be lupus, or you could end up with the real thing! :(
Some people ask me if any of my several autoimmune diseases (lupus, RA, autoimmune hepatitis, Hashimoto's thyroiditis, celiac disease and psoriasis) will go away when I beat Lyme disease. In my case, I think probably not. Some of them could go into remission, but I think I actually HAVE all of those illnesses, because my family is extraordinarily pre-disposed to developing them. We have a long history of AI disease in our family: my dad had RA, two of my aunts died of complications of lupus (kidney failure), my 2nd daughter has Hashimoto's, my 3rd daughter has lupus and Addison's disease, my niece has Grave's disease, and 3 of my 5 grandchildren have celiac disease.
I suspect I would not have developed ALL of those AI diseases if it hadn't been for Lyme, though. In a space of just 2 years I developed 3 AI diseases plus fibromyalgia, and it was just a couple of years after I contracted Lyme.
The key evidence that I actually have lupus is that some of my blood work is positive for the anti-double-stranded DNA autoantibodies, which doesn't usually happen if you just have Lyme. Lyme patients DO frequently have a positive ANA, but not the high level of the anti-DS DNA antibodies that I have.
Of course with everything that I have it's difficult to disentangle the symptoms and decide which symptom is due to what. Most of the time I don't bother....but this morning when I woke up with the swollen painful finger joints and they refused to get better over several hours, I had to email my rheumatologist and ask him whether I should continue to try to cut down on my prednisone given the RA flareup. He said no, keep the dose where it is for now. I first had to figure out whether or not the pain was due to RA, so went on line to check out the symptoms to be sure. For example, RA can show up in the morning but will persist, whereas osteoarthritis can happen in the morning too but usually feels better after 30 minutes or so.
Eventually I hope to get completely off the prednisone, because it is VERY bad to take steroids when you have Lyme. Steroids suppress your immune system, so it can't fight Lyme very effectively. But I have to balance the needs of my Lyme disease with the needs of my AI diseases. Prednisone has undoubtedly saved my liver from destruction by my immune system, which has become very confused and tried to kill several of my organs. It actually did kill my thyroid. But more about that later....
In any case, I wish everyone a very Happy (and hopefully HEALTHY) New Year!!!
If you are still very ill feel free to write me. I was treated "alternatively" for Lyme 6 months ago and I can't tell you how amazing I feel. It's a miracle but it makes total sense. I live in NYC and people come from all over the world to go to the clinic I went to in Midtown.
ReplyDeleteBig hugs,
thatbag@me.com
Would you be willing to tell me about this therapy? I've just been diagnosed, have multiple other AI things and currently looking for a Dr to treat me.
DeleteMy 15-year-old daughter was just diagnosed with Lyme and after further tests we discovered there might be a lupus or connected tissue disease what's the clinic in New York would love to try something to help
DeleteKimis,
DeletePlease try to contact that person who posted about the NY clinic at the email above: thatbag@me.com. I am not sure which clinic they are referring to.
Good luck to you and your daughter, my heart goes out to you both!
JoAnn
Thanks Anonymous! I'm glad you're feeling better! Unfortunately traveling to NYC is out of the question at the moment, but I'm on IV Merrem right now and am hoping for improvement.
ReplyDeleteHi joann,
ReplyDeletePpl are not specific when talking about symptoms and I'm kinda confused, so I'm gonna explain in detail:
1. Stabbing pain on kness, wrists, ankles, abdomen and chest- so bad that I suddenly sit in pain on my bed holding my belly. The one on my joints feel like a spear going through my skin and stopping me from walking, I just got paralyzed.
2. Ice picking pain behind the eyes, on my eyelashes, on the back and top of my head
3. I feel like my eyes are literally shooting fire, like I feel the noise and pressure coming out of my eyes- so bad that in more than one occasion I pushed the person I was talking to trying to protect them from the fire, HAVE U EVER FELT THIS? Its so weird.
4.Stabbing and burning pain also on the side of my thighs also like fire.
5. Excruciating pain on both arches on my feet, cant stand for more than a few minutes. It feels better with massage and pushing my toes up really hard like stretching.
6. Of course the pinching and pricking pain ALL over; ears, nose, jaw, legs and arms, teeth, under my NAILS and Also on my private parts.
7. Out of balance, can't walk in a straight line, need crutches.
I had Igenex Igm 23 +, 31 ++, 41+
I wonder if it could be a false positive due to zero igg bands present, could it be virus like EBV?
I will make this as short as possible. 3 1/2 years ago I started with a horrible headache mostly behind eyes/face then sometimes I will get weird vision almost like my contacts are in backwards, I have horrible neck/shoulder muscle spasms/pain, ringing of the ears and jaw pain. I've been to every type of doctor as well as been on all types of medications (muscle relaxers, epidural injections, botox, trigger point injections) etc and no relief. Some days better than others but I always have pain and some days it's so bad I can't get out of bed. I was tested for lyme and on my first blood test I had IgM 41 and 23 as well as Lyme western blot IgM (+) and igG 41. My doctor told me to go to an LLMD and I tested negative across the board. I got one more blood test done by my doctor and only tested positive for IgG 41. The LLMD didn't give me the time of day so I kind of stopped going down this path. It's been almost 3 years since then and I've had no relief and no light at the end of the tunnel. The only thing I have is some disc herniation in my cervicle spine but it's not significant and like I stated I've been on so many treatments that if it was that I would've gotten some relief. Could it still be Lyme?
ReplyDeleteAmanda, yes of course it can still be Lyme. I'm sorry to hear about the LLMD. Perhaps he or she has not heard the latest news: that there are strains which cause Lyme (or a Lyme-like illness) that are not detectable by standard Lyme disease tests. There are other tick-borne illnesses that cause horrible symptoms too. My suggestion is to find another LLMD as soon as possible.
DeleteYou are in my prayers,
JoAnn
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ReplyDeleteHello. I have been dx'd w/ SLE for 4 yrs. Nearly every day of these past 4 years has been excruciating. Very little relief(if any) from the dozens of meds I've been rx'd from as many specialists. I have an appt with a h
ReplyDeletenew rheumatologist next Feb & was getting together my records. I logged into my patient portal from a neurologist I was referred to because the first rheumatologist (referred to by my my GP who told me I tested + for SLE) I saw said, "well you don't have SLE, you DO have fibromyalgia,but with your increasing CNS issues, I can't rule out MS. Go see a neurologist!). The neuro was amazing & read all of my 3 pages of symptoms that had progressively gotten worse. She rechecked my labs & wisely ordered Lyme since I mentioned I hiked dirt trails everyday in a heavily wooded nature park(in TN,in the spring) She said "you tested + for Lupus & a couple of Lyme antibodies, but not enough to make the diagnosis of Lyme disease. I'm not sure what this means, so I'm sending you to an infectious disease specialist who can interpret this". That dr ran more tests & said without a doubt I have Lupus because my ANA had been + this whole time & so had my anti-dsdna which is exclusive to SLE. He never mentioned Lyme at all.So I never THOUGHT of Lyme again. How could I with a "conclusive" Lupus diagnosis from an infectious disease specialist? Fast forward 4 years & I'm no better. Countless drs. Bloodwork. Surgeries. Hospital stays. But this entire time my anti-dsdna numbers have stayed the same- very low(in the teens) even though I feel & AM worse. Even my inflammation markers are generally WNL. Nothing has ever made sense. My labs don't correlate with how my body is deteriorating, nor do they really substantiate a diagnosis of SLE (according to 2 drs). Which brings me here- my old labs on my patient portal. This was the 1st & only time I've ever been screened for Lyme (Nov. 2015- 6 months after onset of symptoms):
Lyme screening: + for IgG p18 & + IgM p23 Western Blot. Rocky Mountain Spotted Fever screening: 0.41 IgM with a threshold of 0.00-0.89 as normal. So my Rocky Mountain Spotted Fever is WNL & negative.I am left wondering what in the world all this means?! IgM I know is a recent infection. IgG means it's been in your system a bit. These tests were done 6 months after my initial illness of 104 fever, vomiting, diarrhea, flu-like symptoms for 3 days that I "recovered" from but not really. I then developed fatigue upon waking, malaise, joint pain, swelling & arthritis,constant GI problems, vertigo, fainting, vestibular migraines, auditory & visual hallucinations, swollen lymph nodes, low grade fever nearly daily,peripheral neuropathy,tachycardia,HTN(sporadically extremely high), sore throat,rashes... the list goes on as you can imagine.
I was a surgical tech. I'm no dummy when it comes to science & medicine. Someone tell me please how a person can have antibodies to a bacteria WITHOUT BEING EXPOSED TO IT?! And that's just Lyme. What the heck is going on with the RMSF test also. So I have "some" antibodies, but "not enough" to warrant a diagnosis or at least a red flag? I don't keep ticks as pets people! Anyway. Thought I'd message you because I read in this post that you also have SLE antibodies. My mother has Grave's disease, but as far as I know, that is the extent of my family history with AI disorders. So I'm back at square one again. Four years later.
I've read a lot of your blog(I used to blog also) & researched Lyme for hours. Yesterday I thought this Lyme discovery was good news-finally an answer! But after watching Under Our Skin today... the excitement quickly faded. I hope you continue to feel better & keep up the good work!
I'm so sorry to hear about what you're going through. As usual your ID doctor blew off Lyme disease immediately (why doesn't this surprise me?).
DeleteYou are totally right to wonder how in the world anyone can produce the antibodies to a disease without exposure???!!!??
After my insurance denied my claim for my medical bills due to Lyme disease, they told me I didn't have Lyme, despite having been dx by at least 3 other doctors with Lyme AND having positive antibodies to Lyme-specific bands on the WB! And that question is EXACTLY what I asked them! How do you explain the positive antibodies to Lyme?!? I also asked them how they could sleep at night after dx'ing patients without seeing them.
In any case, we need to talk about you. The fact that your mom has Grave's is enough of a family history with AI disease to elevate your probability of developing them. From all of the different antibodies you have tested positive for, I would suspect that Lyme and/or even Bartonella (which frequently is carried by ticks that carry Lyme) have reprogrammed your immune system and allowed it to spin out of control enough so that you developed one or more AI diseases.
You may have both Lyme and lupus, like me. Doctors (and other people) hate to admit that life is that complicated... that you can have BOTH illnesses at the same time. But it's true. I do hope that you are able to see an actual Lyme Literate doctor (LLMD) and rule out (or rule in) Lyme disease.
Best wishes,
JoAnn
Thank you for your insight!! All the best to you as well. I will message with any updates.
ReplyDeleteLeah