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Could this be lyme
Dear all, I was troubled with a series of health issues since Jan.2009. Initially started with diarrhea/IBS type of GI symptoms, then progressed into early waking insomnia, myagia, tinnitus and depression. I am on Remeron which helps improve sleep and reduce a lot of symptoms. The situation is relatively stable for now.
Recently I took LABCORP tests for Lyme, just for curiosity. To my surprise, the p41 band in the Lyme WB turns to be positive, which is abnormal. Technically my case is negative since this is the only reactive band. But after checking on-line, it seems that p41 AB is highly specific to spirochetes. This makes me wonder if all my previous sufferings were due to Lyme? I live in California and don't recall any tick bites or EM rashes. If this is not Lyme, what else could this be ?
Recently I took LABCORP tests for Lyme, just for curiosity. To my surprise, the p41 band in the Lyme WB turns to be positive, which is abnormal. Technically my case is negative since this is the only reactive band. But after checking on-line, it seems that p41 AB is highly specific to spirochetes. This makes me wonder if all my previous sufferings were due to Lyme? I live in California and don't recall any tick bites or EM rashes. If this is not Lyme, what else could this be ?
Glad to hear you are making progress in unraveling the mysteries of your condition ... I understand how startling a Lyme diagnosis can be, and I still work on my 'attitude' about it. A work in progress.
I'll write a longer post tomorrow if I can, but wanted say good for you for pursuing whatever it is. As disturbing as the diagnosis may be, it's better (in my view) than not knowing.
Hang in there! From here, life should get better. Not tomorrow or the next day, but now you have some data to work from.
Best wishes --
I'll write a longer post tomorrow if I can, but wanted say good for you for pursuing whatever it is. As disturbing as the diagnosis may be, it's better (in my view) than not knowing.
Hang in there! From here, life should get better. Not tomorrow or the next day, but now you have some data to work from.
Best wishes --
Just a bit update of my situation after half a year. I finally got in contact with a LLMD in San Francisco and she sent me to do a blanket of Igenex tests. Because of my striking GI symptoms, she also sent me a battery of tests of parasite.
My symptoms actually turned better during the past half of year, so I did not take it too seriously given my work is pretty busy. I just finished the tests and went back a second visit a few days. To my surprise, I got positive lyme for both IgM and IgG.
Detailed results:
IgM:
p31 ++
p34 IND
p41 ++
p83-p93 ++
others -
IgG:
p31 ++
p34 IND
p41 +
p58 +
others -
The is a big upset to me given that my symptoms are gradually tapering off. The remaining symptoms are occasional stomach pain and back pain. And I still need a bit of help from medication to ease my insomnia. But virtually nothing else.
The doctor said my situation last year may not be fully attributed to Lyme. It could be just a portion of it. In addition, the symptoms I have now does not look like typical lyme. But she also mentioned the test results look very likely that I was exposed to Bb at some point in my life. We are still waiting for the parasite results to come out.
I was wonder if anybody heard of any false positive by Igenex standard? Also is it possible that Lyme just went away by itself or I just fought it off by myself? I am very concerned since I really cannot remember how come can I get Lyme. I researched Lyme as one possibility of my illness simply based on my old symptoms on Internet, yet it is becoming a reality ? I am really shocked.
My symptoms actually turned better during the past half of year, so I did not take it too seriously given my work is pretty busy. I just finished the tests and went back a second visit a few days. To my surprise, I got positive lyme for both IgM and IgG.
Detailed results:
IgM:
p31 ++
p34 IND
p41 ++
p83-p93 ++
others -
IgG:
p31 ++
p34 IND
p41 +
p58 +
others -
The is a big upset to me given that my symptoms are gradually tapering off. The remaining symptoms are occasional stomach pain and back pain. And I still need a bit of help from medication to ease my insomnia. But virtually nothing else.
The doctor said my situation last year may not be fully attributed to Lyme. It could be just a portion of it. In addition, the symptoms I have now does not look like typical lyme. But she also mentioned the test results look very likely that I was exposed to Bb at some point in my life. We are still waiting for the parasite results to come out.
I was wonder if anybody heard of any false positive by Igenex standard? Also is it possible that Lyme just went away by itself or I just fought it off by myself? I am very concerned since I really cannot remember how come can I get Lyme. I researched Lyme as one possibility of my illness simply based on my old symptoms on Internet, yet it is becoming a reality ? I am really shocked.
Welcome,
Could it be lyme? yes, lyme is a possibility.
and to add to what Jackie said--
regarding testing: even the better testing out there isn't considered sensitive enough to be used as a diagnostic tool.
Meaning: there is no test results that we can look to and say "s/he doesn't have lyme disease". Results of testing can support a clinical diagnosis by a Md.
and as Jackie stated, it would be prudent to seek out a lyme doctor who sees this day-in-and-day-out. Even most infectious disease doctors & neurologists lead patients down the wrong path. From what I've heard.
Could it be lyme? yes, lyme is a possibility.
and to add to what Jackie said--
regarding testing: even the better testing out there isn't considered sensitive enough to be used as a diagnostic tool.
Meaning: there is no test results that we can look to and say "s/he doesn't have lyme disease". Results of testing can support a clinical diagnosis by a Md.
and as Jackie stated, it would be prudent to seek out a lyme doctor who sees this day-in-and-day-out. Even most infectious disease doctors & neurologists lead patients down the wrong path. From what I've heard.
Welcome to medhelp. Sorry to hear about your ailment.
From what I read (I'm not medically trained), band 41 reacts to all spirochetal (spiral-shaped) bacteria, not just the one that causes Lyme. Among other spirochetal bacteria are the ones that cause syphilis, for example.
What did your MD say about the positive test?
The twitching, vibrations, tinnitus, joint pains you report are consistent with Lyme and/or coinfections, so being tested further might be a prudent thing to do, but I would recommend that you consult a Lyme specialist rather than a regular MD. There is a great deal of controversy about Lyme, and many MDs do not recognize or understand the symptoms of Lyme+.
Many of us don't remember a tick or a rash, so not having them doesn't rule out Lyme.
We don't post Lyme MD names in public here, but if you'll send me a private message through this website about where you are in California, we'll try to help you find an LLMD [so-called Lyme Literate MD].
From what I read (I'm not medically trained), band 41 reacts to all spirochetal (spiral-shaped) bacteria, not just the one that causes Lyme. Among other spirochetal bacteria are the ones that cause syphilis, for example.
What did your MD say about the positive test?
The twitching, vibrations, tinnitus, joint pains you report are consistent with Lyme and/or coinfections, so being tested further might be a prudent thing to do, but I would recommend that you consult a Lyme specialist rather than a regular MD. There is a great deal of controversy about Lyme, and many MDs do not recognize or understand the symptoms of Lyme+.
Many of us don't remember a tick or a rash, so not having them doesn't rule out Lyme.
We don't post Lyme MD names in public here, but if you'll send me a private message through this website about where you are in California, we'll try to help you find an LLMD [so-called Lyme Literate MD].
Forgot to mention, the positive band is IgM p41 (FLAGELLIN). During the course my illness last year, I did experience other neurological symptoms, e.g., muscle twitches, joint cracking. The most strange thing was a vibrating feeling that on my right leg, which lasted 2 weeks and then went away by itself. The tinnitus is constant and manifests itself in a wax and wane fashion. I am in my 30s, and the illness made me feel like I am in my sixties.
Any input is welcome.
Any input is welcome.
BTW, I did STD tests before which can rule them out. My teeth do bleed quite often, and it is very likely that I have periodontitis. Not sure how much this is related.
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