posted
I have seen others (myself included), question why one with chronic lyme would continue to solicit an IgM response but not an IgG.
As many of us know, an IgG immune response occurs after an IgM response. That being said, if one were to continue eliciting an IgM response, common sense tells me that we also would elicit an IgG response. Scientific literature supports this as well. I've heard some argue that these responses are cyclical but considering the IgG usually hangs around much longer than the IgM, this doesn't make any sense to me.
I've discussed this topic with a few scientists and doctors (not coming from my LLMD of course) who very clearly state that this pattern is not suggestive of Lyme but instead something else cross-reacting (ugh, here we go again).
I know Dr. C states the following:
"Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies."
Is anyone aware of any scientific data/abstracts that may support his statement?
Thanks, Kristin
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sixgoofykids
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posted
This page has a lot of information, and mentions the need to rule out cross-reactivity when there is a lack of IgG response. It also has a lot of references that you might sift through to find your answers.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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treepatrol
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posted
Because everytime it gets attacked it learns evertime it changes its expression untill the immune system recognizes it again bingo igm again and again.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
timaca
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posted
I am playing phone tag as I type this with the director of a lab to hash out this very issue. When we connect, I will let you know what he says.
One prominent LLMD looks more at the IgG response due to the fact that IgM WBs can give false positive results. Especially if viral infections are present.
IgMs should convert to IgGs...if it is really lyme (my understanding). That's not happening in me now. (It did before). I'm still getting a Igenex positive WB IgM for lyme. However, the IgGs aren't suggestive of lyme.
It is likely that I have chronic viral infections...so that may be causing the false positive IgM WB.
Once the EBV is treated in me I would think, that if the EBV is causing the IgM WB for lyme to be positive, that the IgM would become negative...
I'll let you know if I learn more.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Hi Timica....yeah, I'm with you on this one. As much as I'd like to believe it is Lyme I've been treating all along, I think I'd be in denial if I didn't seriously consider it being something else....question is what!
Considering the herx I experienced, I can't help but believe it is a bacteria...
Kristin
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Marz
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posted
Are IgGs with indeterminate, but lyme specific bands considered clinically to be a positive like IgMs are?
Also, what if the IFA test is indeterminate as well?
Posts: 1302 | From USA | Registered: Dec 2002
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posted
You lucky people -- you have a positive test!!!
Seriously, just try explaining to an AMA doc why you are on antibiotics for Lyme disease (for 5 years now) and you have no recollection of a tickbite or a rash and no reactive bands on either IgG or IgM. That is my hubby.
"27 Reasons Why Someone Could Have a False Negative Lyme Test" may offer some explanations.
If hubby did not have the positive bloodslides from Fry Lab showing the Babesia and Bartonella it would be hard to keep believing that he has a tickborne illness.
Plus the other nondefinitive tests -- low CD57, high C4a, abnormal brain SPECT scan and the clincher -- one positive PCR test for Lyme.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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cantgiveupyet
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posted
IGM and IGG bands keep trading places.
One time they are on the IGM, next test they go to the IGG.
I think they are confused
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Based on the discussions I've had with some scientists/doctors that really understand how the testing actually works, the message has been relatively clear that IgM results for late Lyme disease mean nothing without IgG results. Additionally, if IgM band 23 is positive, you would expect to see IgG band 23 positive as well, etc.
Apparently IgM results are not as reliable either in that there is more variability in interpretation from technician to technician and from lab to lab. IgG is supposed to be more reliable in terms of what is reported.
Again, I've had the WB performed 3 times with a very limited IgG WB result so I've got plenty of 'data points' from which to question my diagnosis....this may not be the case for many others here.
I was also negative for the ELISA but as we all know, this test is often useless.
Just 'thinking out loud'....
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timaca
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KS~ If you haven't been tested for viruses, then do get tested for that. They can cause false positive IgM WB. (At least acute viral infections can. I don't think chronic viral infections have been studied with WBs.)
The symptoms for chronic viral infections and lyme infections are the same. You can't tell the difference between the two.
I, too, have had significant herxs to antibiotics. (Read: put me in the ER). I also had significant improvement on IV rocephin. (But not on IM bicillin). Did I have lyme? It can't be proven one way or the other. I am suggestive of lyme, just as I am suggestive of chronic viral infections.
How long have you been on antibiotics? Did you see improvements during that time?
Marz~ An IND band is an IND band. It is not a positive band. An IND IFA test is also an IND test. It leaves you hanging. Get tested again for lyme if you wish. At more than one lab if possible. Get tested for viruses. Get tested for any and everything your PCP can think of. Then treat for what looks most likely.
If there was a good test for lyme then this would be easy. There isn't.
Timaca
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Michelle M
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quote:Originally posted by KS: Based on the discussions I've had with some scientists/doctors that really understand how the testing actually works, the message has been relatively clear that IgM results for late Lyme disease mean nothing without IgG results. Additionally, if IgM band 23 is positive, you would expect to see IgG band 23 positive as well, etc.
This is interesting and may well apply in other diseases, but I doubt it applies to lyme.
Most of what we know is based on the clinical findings of LLMDs. I suspect your sources have not treated thousands of borreliosis patients.
quote:Apparently IgM results are not as reliable either in that there is more variability in interpretation from technician to technician and from lab to lab. IgG is supposed to be more reliable in terms of what is reported.
Pardon me if I don't feel a burst of confidence in lab testing coming on. In one study, nine infected patients' blood samples were sent out to 18 labs. For IgG antibodies, the labs missed 10 out of 18 positive samples. For IgM, the labs were even worse, missing 16 out of 18 positive samples. (Arch Intern Med 150:761-763, 1990).
Borrelia burgdorferi is simply not like any other bacteria in the world. There is no point in comparing it to others and expecting it to behave similarly. It's like apples and oranges.
How do these scientists even account for seronegative lyme?? Do they doubt it? And seronegative lyme is documented to death! Not only is there no IgG to make them happy, there's unlikely to be any IgM, either! Yet these people have positive PCR's/tissue biopsy's, etc., or even spinal taps, yet cannot test blood positive.
Lyme seems destined to remain largely a clinical diagnosis for the foreseeable future.
While I think it's good to keep an open mind, it worries me somewhat that newly diagnosed people -- who ALREADY feel anxious and doubtful about their diagnosis -- will now assume that if they have a negative IgG, they don't have lyme.
Making me even more skeptical is the sizeable population of people with known, documented bites and EM rashes, positive and even CDC positive IgM's, positively textbook lyme presentations, but STILL lacking the "correct" IgG bands (I have 9 IND bands on my IgG -- sheesh!)
According to this theory, then, these people have something else? Seems to me there are some serious flaws in that line of reasoning.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Greatly appreciate the response. It perfectly highlights the issues we all continue battle. Poor diagnostic testing will unfortunately continue to plague us until detection methods are improved.
What we are left to sift through are odds and statistics. For example, for those of us who have not had a bulls-eye rash and do not have test results to support lyme (e.g PCR, ELISA and WB), the level of assurance that we have lyme disease diminishes. Certainly, the testing is flawed but the question really is, how flawed?? Problem is that we really just don't know for sure.
I am by NO MEANS suggesting that the lack of a positive test response means one does not have lyme by any means but as part of a clinical diagnosis, it is even more important in those cases to ensure a thorough differential diagnosis.
I am a former microbiologist and have read many scientific articles related to this bacteria and the diagnostic testing (data presented from both sides) and the ONLY thing that becomes more apparent the more research I do is that there are a lot of claims and conclustions being made by both sides that are based on theory and limited data. This bacteria is truly brilliant and we don't even know that half of it yet.
In some cases we may not even be treating Lyme. Just because a LLMD doctor treats a seronegative person for Lyme and they eventually get better, it is possible they are treating another infectious disease (maybe unknown to medicine). I think this is partially supported by the fact that there is so much variation in treatment protocols and individual responses (not including those people with babesia or erlichia).
Sorry, I'm in the grey zone right now trying to sift through all of this. I think discussions such as this are important....at the end of the day, most of us have learned from this disease(s) that we have to be our own advocates.
Sorry so lengthy...
Kristin
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timaca
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posted
To respond to Michelle's post. I attended the LDA and the ILADS conference. I heard Dr. F speak. He did a study where he sent blood that he knew was lyme positive, and blood that he knew was lyme negative to the "lyme specialty labs" and the "regular labs."
Guess what? All the labs got the "diagnosis" correct...either lyme or no lyme.
The results surprised even him.....
Anyone else hear that talk? It was NOT reported in the Lyme Times that I could find....
Best, Timaca
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CD57
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posted
Interesting thread. Kristin, SO glad you are researching this and talking to scientists who may in fact have a clue about all this stuff.
Timaca, wow! So am I correct in understanding that the "regular" labs (like a Quest, for example) was saying on their WBs that known Lyme-positive blood was in fact, positive? How was that accomplished considering the "regular" labs leave out the two most important bands: 31 and 34?
Posts: 3528 | From US | Registered: Apr 2007
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posted
"Guess what? All the labs got the "diagnosis" correct...either lyme or no lyme."
So what about those of us who are on the fence, and only have a few IND bands, but an overall negative? Does that mean we are DEFINITELY negative? Not trying to argue, just playing devil's advocate.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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Michelle M
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posted
quote:Originally posted by timaca: To respond to Michelle's post. I attended the LDA and the ILADS conference. I heard Dr. F speak. He did a study where he sent blood that he knew was lyme positive, and blood that he knew was lyme negative to the "lyme specialty labs" and the "regular labs."
Guess what? All the labs got the "diagnosis" correct...either lyme or no lyme.
The results surprised even him.....
Anyone else hear that talk? It was NOT reported in the Lyme Times that I could find....
Best, Timaca
Now that is VERY interesting!!! That differs so greatly from past results that it leads me to wonder a great deal about methods. And I KNOW he is a researcher of scrupulous methods! Are we talking ELISA here, or western blot, or what?
In addition to this theory not accounting for culture proven seronegative people, it also fails to account for those who seroconvert after antibiotic challenge. This is NOT a small number of patients.
Please don't take this to mean I don't think viruses (virii???) can and do wreak havoc on us. And I agree every possible differential diagnosis should be considered. I just don't see much holding together this "no positive IgG, no lyme" theory.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Just a couple more thoughts on the diagnostic testing...seems that people with a neurological presentation of lyme (versus arthritic) are much more likely to experience false negatives.
Regarding different laboratories and the consistency of results, seems there is a great deal of variability in the bands that are reported as positive or negative from lab to lab(I can't comment on majority of overall positive vs negative Lyme result).
Complicating all of this is the fact that there are so many different strains of Bb which can lead to different immunoblotting results.
For these reasons, I believe it is VERY important to have more bands evaluated (ie. 31 and 34) to reduce the chances of having a false negative test reported.
CraigC, we should be playing the devil's advocate!! I play it with all sides as I just want to know what is truth versus theory versus fiction. Regarding your IND question, I'm not sure there is any good scientific evidence to justify any response.
Obviously your clinical symptoms and possible exposure is critical here for a diagnosis. I'm not sure IND bands alone have much meaning by themselves...then again, you wouldn't have been tested unless you were sick, right? Not knowing the bigger picture, I can ONLY give you my non-MD opinion on the testing alone. Remember that testing is just a piece of the diagnostic puzzle (whether positive test results or negative).
Posts: 561 | From mass | Registered: Jul 2007
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I appreciate your comments. I was just throwing that out there, in terms of "testing" alone.
My clinical symptoms resemble those of someone with Lyme, but there are just as many reasons to believe it might be something else, when I review the road traveled [and symptom severity]. Because everyone reacts differently, I opted for treatment anyhow. I can't lose in that regard. It just puzzles me that my symptoms have gotten no worse or better while on the abx, and I haven't experienced the herxes that most others speak about. It sometimes makes me wonder if I'm chasing the right cause for my symptoms. However, neuros and others have ruled out other things, so Lyme seemed like a possibility [pulled a tick last summer].
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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I'm only talking about Western Blot....I know the ELISA is not good and it also is not as complicated because there is really no interpretation of test results needed.
I'm hoping I'm wrong with the IgG piece as I'd rather know what I'm fighting than not but again, I'm just not seeing the scientific data to support it.
I am currently communicating with an MD/PhD who has conducted several 'lyme diagnostic' studies...too much to get into here but I'm trying really hard to flush some answers out and will of course share anything I learn.
Posts: 561 | From mass | Registered: Jul 2007
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I believe that ticks (probably other vectors as well) carry diseases we are not even aware of yet. My approach to treatment is similar to what you are doing. I've ruled out every other known medical condition that could be associated with my symptoms and I believe that whatever is making me sick is due to some type of an infection. Therefore, I will continue to treat, switching up antibiotics (always including one that will hit Lyme) to hope that I somehow get the bugger that is making me ill. If it isn't Lyme than it is SOMETHING that is cross-reacting with my test. So, while I continue to treat, I continue to search for answers.
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CD57
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posted
Something else to consider here, esp. when considering those w/symptoms but seronegative Lyme tests.
There seems to be more and more evidence amongst the Lyme docs that the co-infections seem to be responsible for more of the (esp. neuro) symptoms than were previously thought. Esp. bartonella (this per Dr S out of FL). In fact I believe that he suggests that at some point soon, "Lyme disease" will be a misnomer, and that it really should be "bartonellosis" ,etc. To build further on this, my LLMD said that often the body can handle one of these infections alone, ie; Lyme by itself, to the point where antibodies may not show up on tests. It's when you get multiple infections that there is more likelihood for problems.
Makes sense to me.
Posts: 3528 | From US | Registered: Apr 2007
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I just think we need to remember why you put it in quotes which is because we don't know what it really is other than some infectious disease associated with Lyme or ticks and that we probably should not confuse it with the bartonella resposible for classic "cat scratch fever".
Does anyone even know why we refer to it as a 'BLO'? Couldn't it be something totally new, not even related to bartonella?
Posts: 561 | From mass | Registered: Jul 2007
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posted
Another possibility to consider regarding continued IgM response is some kind of bacterial/viral mediated autoimmunity. I never tested strongly for IgG antibodies, and now after a year of treatment I still test positive for IgM bands 41 and 93, but equivocal for all the IgG bands. There have been studies that show that there is significant correlation between some Lyme immunoreactive proteins and the HLA types expressed on the surfaces of human cells.
HLA types are unique to every person though, so perhaps some unlucky people have some surface proteins that are extremely similar to Lyme or some other virus/bacteria, and the immune system gets confused and starts hammering away at healthy cells thinking they're whatever originally triggered the immune response - some organism which might have been killed by antibiotics or exited the system long ago. Maybe that's why the IgM response continues and the IgG response doesn't appear - the immune system is responding to healthy cells thinking "Hey it's a new infection! Hey it's a new infection!" over and over.
Some of my symptoms are consistent with a rare autoimmune disease called Susac's syndrome (vertigo, migraines, eye problems). The good news as far as I see it is that from what I've read, molecular mimicry autoimmune syndromes like that tend to "burn themselves out" after a couple years for whatever reason. I plan on continuing to take antibiotics to "hedge my bets" against chronic infection, and perhaps try some kind of immunomodulatory therapy like Plaquenil to see if that helps at all.
Posts: 32 | From Massachusetts | Registered: Sep 2007
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quote:Originally posted by Bitrex: The good news as far as I see it is that from what I've read, molecular mimicry autoimmune syndromes like that tend to "burn themselves out" after a couple years for whatever reason.
I'am interested to know the source about molecular mimicry wearing off after a couple years. AFAIK molecular mimicry is suspected in RA and that disease certainly doesn't stop for most people.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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posted
BLO is a term coined by the Dr B I think -- these organsisms were first detected on G.I. biopsies of kids by a Dr F in New Jersey (a G.I. LLMD). Can't remember his website -- think some of the journal articles are reprinted on that site. Found the website, but it only lists the articles and no longer includes the text.
I wish there were more test options than Elisa, Western Blot, PCR ... Not sure if the C6 peptide test is still available, but that test doesn't seem to be that great either.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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timaca
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posted
CD57~ Yes, the regular labs (like Quest) got the testing right for lyme. (Did no one else go the conference and hear Dr. F state this?)
CraigC~ If all you have is IND bands, then get tested for other things. You can also get retested for lyme, at several labs and then consider all the results together. Treat what is most likely.
If you haven't had a herx and haven't gotten better on antibiotics, then perhaps you need to look elsewhere for the answer to your troubles. Have you been tested for viruses?
Michelle~ My understanding was it was the WB test. I asked Dr. F if the bands came back the same from various labs. He thought that was an interesting question, but failed to get back to me on that. My guess is that the bands came back different (as they do in me) but that the overall test result was either negative or positive...and that is what was correct.
Best to all, Timaca
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lymie tony z
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I REALLY don't know where some of you are getting your information from but it is in definite error....
I initially posted positive for lyme western blot and had great physical pain....
After six months of two orals...I was taken off all antibiotics and in a month and a half was IGM positive.
Which came back with encephalitis and more neuroborreliosis than anyone could possibly want....
That would tend to blow someone's theory up around here....huh! The fact that I was more psychologically symptomatic....
When tested however I got two results from two labs...Quest found me negative both ways....Igenix however found me positive....
but gee not enough positive bands for IgG just IgM....which means it was now active....
OF COURSE I could tell having been very sick before initial antibiotics...
and then feeling very well durring and only having symptoms two to three days a month into the sixth month of treatments....
which of course SHOULD have told the clinician DUCKS that I was STILL ACTIVELY INFECTED....duhhhhhhhh....
when they discontinued my oral meds....telling me how I "must surely be cured of the lyme disease". NNNNOOOOTTTTT!!!!!
since then I have had either IgG or IgM positive seperately or together....
I have even conducted again my own little test of the labs that did the tests and sent
specimens from the same day and my same arm to two different labs....one comming back negative and one VERY POSITIVE...
both IgG and IgM.....approximately seven years into treatment....however...I have always felt sick enough to know...
on my own... when I have been active and when I have not been actively infected.....
I don't know what all the debate is for other then to mess with peoples minds....
this is a very difficult disease to find....in the human body....and a CLINICAL DIAGNOSIS IS NEEDED TO TREAT.....
PLEASE QUIT bringing up a lousey testing modality for a reason to suspect "SOMETHING ELSE"....
Most if not ALL of us have been PRE-TESTED for everything ELSE FIRST ANYWAY....
(Do you think we WANT THIS DANG DISEASE?....)
and then there was LYME DISEASE LEFT....
We don't have to suspect something ELSE....we don't have SOMETHING ELSE....
when we're sick, we are sick from lyme disease or one of the co-infections...so lets just call it sick from a TBD....
When they come out with a definitive test for a TBD or TBI(tick borne infection)...
then I will be glad to be tested again and find out where my disease is... at that particular time....
there's REALLY no point in squabbleing about it now until that time comes...where is Dr Collins of genetisistical genome mapping fame....maybe he can figure it out!
At least he could figure out if this little disease or diseases has been genetically
engineered and WHEN it was done and maybe even by which government....
then we could ALL put that theory either to rest finally..... or get lawyers....
cuz I know what I have....CLINICALLY!
AND that, my friends, is all there is to that.....
No if's and's or butt's.......
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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map1131
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posted
My SS hearing with the judge had a MD present who argued the fact that my IgM was highly positive and that my IgG was zippo on all bands.
Dr C. knew the IgM was the important one and that Igenex obvisiouly messed up the IgG portion of the Western Blot. There weren't even any -/+ on IgG.
Dr C. said forget it. You've been seriously ill with a very long list of a typical lyme disease & company illnesses for 3 yrs. Been on many combinations of abx for the majority of this illness. Highly positive IgM combo and it's...
Lyme disease & possibly other tick borne illnesses in the picture. I had to present a court document after the hearing with judge.
That document was a write-up from Dr C stating his findings on chronic ill lyme disease patients and how it presents ifself.
The SS doc ruled in my favor and especially the judge. He said it's obvisous to me this young 45 yr old woman is ill.
So there was one duck down. But I had two MD's with the same dx. One PCP and one lyme specialists.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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timaca
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posted
Follows is a link to the ILADS website that discusses IgM and IgG WB and the conversion from one to the other.
zman~ Thanks for your input. The only problem is that "clinically" one can't tell the difference between a viral infection and a lyme infection. The symptoms are the same. So you can't know for sure that you have lyme, unless you have ruled out the various viral infections.
So, it is important to get tested for all things...including viruses. And viruses are something that many doctors don't think about testing for.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Well said Tony Z -- If you get better with antibiotics then that proves your clinical diagnosis of Lyme and tickborne diseases was correct.
Antibiotics do not treat viruses.
I don't even bother arguing with the ducks about Western Blot test results -- if they can't think beyond test results then I'll look for another doc.
Pam -- Hubby also won his SS hearing as well. Since Lyme is not a "listed disease" the goal is to prove that you are disabled based on symptoms and inability to do job related activities.
We basically used the arguement that hubby's Lyme and coinfections caused a seizure-like illness that made him unable to function. He had no seizure diagnosis or positive Western Blots but still won the case.
Bea Seibert
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