timaca
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posted
Dr. F mentioned at the 2006 ILADS conference that 5-40% of normal controls in inner city NY had a positive IgM western blot. They did not have lyme disease. They were normal, healthy people.
He was speaking about people with neuropsychiatric problems and said that if those people with neuropsychiatric problems had a positive IgM western blot that it did not necessarily mean that they have lyme.
I will be asking my LLMD about this tomorrow, as I have an appt. But, any thoughts on this?
I recently had a positive IgM western blot. So, is this meaningless?
I have a feeling that my LLMD will say "are you healthy? If not, then your IgM has meaning." I'll post back what he says....but curious about those of you who attended the ILADS conference or viewed it on DVD what to make of Dr. F's comment.
Thanks....Timaca
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posted
I am quite curious because my IGM was positive but ID doc has had the me retested. I do not have the results back yet, which means I am not being treated for anything yet.
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Truthfinder
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Well, in the Great Hartford Lyme Conference last summer, well-known LLMD Dr. B. R. (a psychiatrist) stated that Lyme Disease can mimic every psychological problem outlined in the ``Diagnostic and Statistical Manual of Mental Disorders'' (DSM IV), which is the most widely used psychiatric reference in the world.
Asymptomatic people with Lyme in their bodies is a well-known occurrence. It just isn't well-understood. Nobody knows how to classify these people.
So, I'm not sure I understand what Dr. F. is trying to get across here.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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quote:Originally posted by Lymetoo: If you're ILL and have a positive IgM WB, you need to be treated. Simple as that.
Easier said than done....
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timaca
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Yes, Lymetoo, I agree with that, and my guess is that will be what my LLMD says too.
Yourtroubl~ I had to chuckle at your "easier said than done comment."
Interestingly enough, on the Stonybrook lab website at www.path.sunysb.edu/labs/ticklab/TICKLAB.htm in the tutorial on the Western Blot (this is a slide show) it states that people with chronic lyme should NOT have an IgM western blot run. It goes on to say later in the slide show that few IgM WBs convert to positive later in the course of the disease...and maybe that is the reason.
I called the lab this morning and spoke with a tech there and she said that they ALWAYS run IgG and IgM western blots on everyone....(that has been my experience...Dr. F, who I saw, ordered both and so has every other LLMD that I've seen)...SO...she is going to ask the director of the lab about that, since it is his slide show that is posted...it is basically what he teaches to an immunology class.
At any rate, I'll post back with what my LLMD says.
Truthfinder~ I think maybe Dr. F was trying to get across that just because someone has a positive IgM WB and psychiatric disorders, that you can't assume the person has lyme. Lyme is a clinical diagnois he said.
The Igenex presentation at ILADS 2006 conference states that IgM western blots can be positive later in the disease and that this is an indication of active, ongoing infection.
Timaca
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I think I got my phychiatric disorder about 3 weeks ago when I was diagnosed with Lyme and then found out it was a Federal Offense to diagnose someone with Lyme.
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TerryK
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posted
I'm under the impression from a good source that people who are infected and asymptomatic can possibly transfer it sexually. Also what about congenital transfer from an asymptomatic mother?
It seems logical and reasonable to assume that anyone who is infected is at risk for the disease to activate - similar to viruses that can reactivate.
Here is one excerpt from the page but there is quite a bit of other info that is relevant to this discussion on the page. I believe this source to be a reliable opinion. My understanding is that he is an ILADS LLMD and he presents reasonable arguments along with backup material in the form of references to studies. Premise 2: Borrelia burgdorferi infection is sub-clinical in some infected humans with assumed benign outcome Copious data support that B. burgdorferi infection can be 'sub-clinical' and thus unnoticed in infected individuals (20,30-54) and animals (55,56). The average symptomatic/asymptomatic ratio (S/A) in these studies from endemic areas, primarily using serology for diagnosis, is close to 1:1, much as Steere first noted in 1986 (57). The S/A ratio in 'non-endemic' areas may be similar or higher (58). Notably, no recent 'Lyme disease' study referenced by the CDC considers the asymptomatic state to be significant (17,18). The question of whether sub-clinical cases activate or fail to activate at some future date is intriguing. Lack of sufficiently prolonged longitudinal follow-up in available studies fails to provide an answer. Baranton's recent data, however, show differing pathogenicity among Bbsl species, lending support to the reality of some prolonged innocuous sub-clinical infections although study design limits insight into ultimate outcome (59). When prolonged longitudinal outcome has been considered, several studies do support reactivation among patients (31,33,36,37,41,43,49,53,57,60).
So much that is unknown. Terry
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timaca
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Terry~ I'm sure I had latent lyme that was activated 10 years later with a steroid shot to the knee. If I had been tested for lyme in those 10 years when I was healthy, I likely would have had some reactivity on the WB. Yet, I was not technically ill.
Dr. F did mention on a DVD that I have that he once had a research assistant that was CDC positive on the IgG and IgM western blot, and this assistant was healthy as a horse. Had he been exposed to lyme? Yes. Was he sick and needed treatment? No. Would I suggest a steroid shot for this guy. NO.
I spoke with someone at Stonybrook lab this morning, and they said that a positive IgM later in the illness can sometimes be a false positive and can cloud the issue of making a correct diagnosis. It is important to look at the whole clinical picture.
I'll report later what my LLMD says.
Timaca
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quote:Originally posted by timaca: I spoke with someone at Stonybrook lab this morning, and they said that a positive IgM later in the illness can sometimes be a false positive and can cloud the issue of making a correct diagnosis. It is important to look at the whole clinical picture.
Timaca
I am really interested in this. I am so confused I just dont want to quit. I dont know what to do.
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timaca
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I spoke with my LLMD and he said that he leans towards my + WB as being a true positive since I had so many lyme specific bands showing up. In my case, I had 23-25, 34, 39, 83-93.
He wasn't jumping up and down saying "yes, absolutely positive"...just "I lean towards it being a true positive and that we are on the right track in treating lyme."
In your case, yourtroubl, you have two lyme specific bands 24 (weird I've only seen 23-25 not 24 separately) and 39. If you have symptoms, and are sick I would try to get treatment. What lab did your test?
Take care...Timaca
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posted
It was 23 that was positive and of course 39 and 41. I will have to look at results but I think it was a lab in Utah. My ID thought it was Lab Corp but it was not.
I am just about to give up. Try to survive the days and go on. I have flexeril, relafin and I and ultracet I am going to go take those and go to bed.
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quote:Originally posted by timaca: I spoke with my LLMD and he said that he leans towards my + WB as being a true positive since I had so many lyme specific bands showing up. In my case, I had 23-25, 34, 39, 83-93.
Well, what do you think would have made all those lyme specific bands to show up then???
You have far more to GAIN than to lose by being treated.
Troubl.....I thought you had found an LLMD???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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quote:Originally posted by timaca: Dr. F mentioned at the 2006 ILADS conference that 5-40% of normal controls in inner city NY had a positive IgM western blot. They did not have lyme disease. They were normal, healthy people.
I would say MANY if not all of those people are ticking [no pun intended!] time bombs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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timaca
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HI Lymetoo~ I am getting treatment...and have been for some time...and gratefully, I've shown some improvements.
Just yesterday I reviewed the results of all my WBs. The only lyme specific band I've never tested positive on is band 31. Otherwise, at some time or another, I've tested positive on bands 18, 23, 34, 37, 39, 41, 83-93.
It sure would help the controversy surrounding lyme disease if there was an accurate test!!!
Timaca
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groovy2
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Hi All
The Poor testing is a Major Cause of most of our problems--
To cover there butt Docs wont help you till they have a Test Result they can fall back on if ANY type of question Ever arises on your treatment--
No Test at All is Better than a test that gives False negtives --
False negitives cause Huge amounts of hassle- - delay and NoN treatment --
This is why it is so Important to Diagnose By Symptoms Only --
I had a WB test done by Igenix-- It came back -IND --
I had a picture perfect Bullseye bruse on my leg 20 yrs ago weeks before I started getting sick--
I have had perty much every symptom of both Lyme and Babs--
Every Test and I mean Every Test that I have ever taken comes back super clean-
Docs say YOU CAN NOT Be Sick-- You dont Look sick ect --
Dont Let Negitive Test Results Ruin Your Life -- Jay-
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timaca
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Groovy~ I agree with you. Lyme disease has to be a clinical diagnosis...and I know that Lymetoo has also said this again and again as well.
I think I do have lyme due to my history and symptoms AND the fact that I've been examined from head to toe with at least 60 tubes of blood taken out of me, and MRIs of brain, C-spine, lumbar spine, x-rays everywhere, etc with nothing else found amiss but lots of suspicious Western Blots (and one CDC positive) Western Blot for lyme.
What I think is very important to those who read these posts, is for them to know that even lyme tests that are suspicious for lyme doesn't mean you have lyme!!! It is so important to rule out everything else that could possibly cause your problems.
I've had two friends who had western blots that had many lyme specific bands. One really had Parvo virus, the other had Brucellosis. Neither had lyme disease. Even a very prominent LLMD diagnosed Lyme in the Parvo patient...and it wasn't lyme!!! So you have to be careful!
So...all this is to say...read the links here...increase your own knowledge...then rule out other diseases before you assume that what you have is lyme disease.
Then pray that someone comes up with an accurate lyme test.
Timaca
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Geneal
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I would think the likelyhood of false negatives far out weighs false positives.
How many doctors and tests do I have to go to and through before we can all agree I have Lyme Disease.
Apparently only one. My LLMD.
Unfortunately I went through 7 ducks, about 90 vials of blood for every test imaginable including parvo virus,
a nuclear stress test, ultrasounds, trips to ER, etc. only to reveal......Nothing!!!
Well okay, low lymphocytes (which no duck noticed).
I only had one band on the WB positive (Igm 23). This was done via Quest as I didn't know
about this board or Igenex.
Funny how quick ducks can hand out Rx's for xanax and paxil (which are both addictive).
It wasn't until I was put on Doxy (after herxing for a whole month) that I began to feel better.
I had 54 symptoms out of the 75 listed on the Canadian Lyme site.
I think because testing for Lyme is not an exact science, it causes us to question if we really, really have it.
My neighbor was dx with Typhus, but later had a positive WB as her symptoms were consistent with mine.
She is making improvements as well on antibiotics.
It is a gray area for sure. No black and white in this game.
I agree that you need to be careful with all treatment.
I am sure it is possible to mistake other illnesses for Lyme.
However, I believe this to be the exception and not the rule.
I agree with Tutu. What else made those bands show up?
Kind of makes you wish you had that bulls-eye rash, doesn't it?
Good luck with your treatment.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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quote:Originally posted by timaca: I've had two friends who had western blots that had many lyme specific bands. One really had Parvo virus, the other had Brucellosis.
What if they had both?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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timaca
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Hi Lymetoo~ Good question. One doctor initially thought that the Parvo had activated the lyme infection. However, my friend took a very small amount of antibiotics...not enough to combat a lyme infection (for as sick as she was). She quit the antibiotics when she realized it was Parvo. And she eventually got well. If it was lyme, it is doubtful that she would have gotten better.
The other person did take a course of antibiotics consistent with a brucellosis infection. She got better on that. She had travelled to a university medical center for diagnosis, for she was quite ill. They did good detective work to realize that she had been out of the country and had drunk some raw milk...
Geneal~ I agree with your "false negatives outweighs false positives" if you are speaking of CDC criteria.
"What else makes those bands show up?" That would be a good question for the head of MDL, Igenex and Stonybrook to answer...as well as Dr. F.
Bottom line....we need a better test!
Timaca
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Geneal
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posted
Dear Timaca,
I agree about having an absolute test, but we don't have that now.
Clinically, I presented with Lyme..
When I googled symptoms it was either Lyme or Lupus.
My ANA was negative, so I knew it had to be Lyme.
All I know is that I have made improvement on antibiotics...
If I have to take them the rest of my life to have quality of life, I am fully prepared and willing to do so.
Remember, acne sufferers stay on antibiotics for years......nobody questions that.
I guess pimples get more respect that Lyme.
I've always considered using that as an excuse diagnosis if my insurance company starts denying payment of meds.
We do the best we can with what we have.
Unfortunately, for the majority of mis-diagnosed Lyme sufferers that is just not good enough.
Hope you get some "clear" answers to your concerns.
Hugs,
Geneal
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