posted
I've posted earlier with my symptoms...in a nutshell, I've had arthritic symptoms for 9 months and still do not have a conclusive diagnosis.
The Rheumy thinks it could be Rheumatoid Arthritis with an overlap of Polymyositis, but I don't test positive for RA. I did get a positive JO-1 (following up with an EMG) for Polymyositis. Meanwhile, I've seen an LLMD who put me on abx and I've seen a dramatic improvement in my symptoms within the first 2 weeks.
The LLMD initially told me that he doesn't think I have Lyme based on the fact that my symptoms are primarily arthritic in nature and I continually test negative for every Lyme test I've had done (about 8 by now!). He said that Lyme Arthritis generally tests positive where neurological LD often tests negative.
Has anyone else heard this? I'm glad he's willing to dispense the abx in spire of thinking it's not Lyme (I'm not convinced I have Lyme - but I know the abx are working!).
Anyone else have primarily arthritic symptoms without neurological symptoms?
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Whatever the cause of your arthritic symptoms, it seems that an infectious (likely bacterial) agent is at play in it, given that the abx are working.
If it isn't lyme, it could be an autoimmune condition -- abx sometimes have a modulatory effect on the immune system, bringing a hyper-sensitive immune system into balance.
My personal belief is that autoimmune conditions are also caused by infectious agents, be they viral, bacterial, parasitic, or otherwise (like mycoplasma and "viteria" -- a hybrid of a virus and a bacterium.)
Did your LLMD run a CD-57 count on you? It isn't definitive as a diagnostic, but a low CD-57 is very often seen with Lyme. Also, might be worth having one more lyme test (thru IgeneX, please -- or Bowen, which looks for the actual spirochetes, not immune response) to see if the abx may have kicked your immune response into gear... that happens sometimes -- after a short course of abx, some folks start producing antibodies again.
Hope you find an answer!!! RA seems unlikely to me if your RA factor was normal on the tests.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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My symptoms (besides fatigue) are also primarily arthritic in nature (joints and tendons, all over).
Otherwise I've only had really pronounced neuro symptoms when I first started Rocephin (mild hallucinations, sleep paralysis, freaky nightmares, etc.)
I repeatedly tested negative for lyme for at least a year. I've had one positive test (from MDL) and many negatives (including from Igenex).
My LLMD says I have reactive arthritis. Whether the reaction is to lyme or other bacteria, or both, has to be based on a combination of test results and clinical observation.
I had been bitten by ticks many times before I became symptomatic, so for me it seems a likely diagnosis in spite of test results.
Do you have a history of tick bites or is it possible or likely you were bitten?
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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My LLMD originally thought it could be reactive arthritis but tested me for HLA DR4 & B27 which came back negative. Also, Lyme tests from MDL and Quest have all been negative.
I live in an area that is heavily infested by ticks! We are very aware of Lyme and always do tick checks but I could have been bitten just getting the mail from the mailbox! I just have never removed one from my body to KNOW I was bitten.
Lymetoo,
My LLMD didn't use Igenex and I forgot to ask why. Basically he is treating me solely based on clinical observation and because 2 weeks of abx has started to make a difference. I figure that getting treatment is probably better than getting an actual positive test...but it does have me still wondering!
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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quote:Originally posted by KP: I've posted earlier with my symptoms...in a nutshell, I've had arthritic symptoms for 9 months and still do not have a conclusive diagnosis.
The Rheumy thinks it could be Rheumatoid Arthritis with an overlap of Polymyositis, but I don't test positive for RA. I did get a positive JO-1 (following up with an EMG) for Polymyositis. Meanwhile, I've seen an LLMD who put me on abx and I've seen a dramatic improvement in my symptoms within the first 2 weeks.
The LLMD initially told me that he doesn't think I have Lyme based on the fact that my symptoms are primarily arthritic in nature and I continually test negative for every Lyme test I've had done (about 8 by now!). He said that Lyme Arthritis generally tests positive where neurological LD often tests negative.
Has anyone else heard this? I'm glad he's willing to dispense the abx in spire of thinking it's not Lyme (I'm not convinced I have Lyme - but I know the abx are working!).
Anyone else have primarily arthritic symptoms without neurological symptoms?
This can happen, and is happening to my father. However, if the abx work, take the abx. My guess is that you have true seronegative Lyme disease.
How can this happen for non nuerological lyme, well, first off, your doctor is correct in saying tests for frank arthritic lyme are usually relativly accurate, but here is the kicker, if ever you took abx very soon after the infection, but did not sufficiently eradicate the Lyme infection, in a certain subset of individuals (btw this is incredibly well documented, and there is virtually no dissagreement between the camps on this point, check for yourself-verify independently) who take antibiotics for a "summer cold" or something else very early in Lyme, then later on, for some reason their body will never make antibiodies to the infection even though they in fact have Lyme Disease.
Being that you have frank arthritits, my guess is that this is what happened to you. Your response to the antibiotics is almost certainly not immunolomodulatory in nature as the effects mentioned regarding alternative properties of antibiotics such as anti hyper immune effects take at least a couple months before they become clinically apparent. The best known regarding the immunomodulatory action is minocycline.
So, if your not taking minocycline, then you can almost BET your treating seronegative Lyme arthritis.
Still, even if it is Minocycline, the chances that it effectivly kills frank arthritis in 2 weeks is absurd if its not working as an antibiotic.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Regarding what your LLMD said, regarding Lyme Arthritis generally testing positive where neurological LD often tests negative, I had never heard this theory. It does seem to have relevance with my family. My symptoms are mostly arthritic, and I tested postive. My son has primarily neuro symptoms and has always tested indeterminate or negative with only a few bands positive.
Posts: 23 | From Camp Hill. PA | Registered: Dec 2005
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