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This is completely wrong on so many levels, and incredibly reckless of you to say. My goodness, nearly any lyme doctor or lab could set the record straight.

 

There can be no false positives if only Borrelia burgdorferi genus specific antibodies are considered on the Western Blot – those are bands 18

23 30 31 34 37 39 83 and 93. Only ONE of these is needed to confirm presence of borrelia bacteria. Additionally, there are five nonspecific cross-reacting antibodies in the Western Blot : 28 41 45 58 and 66.

CDC, for reporting purposes only, says you must have 5 bands positive. In the unlikely event you happen to have the 5 non-specific bands only turn positive, then you MAY indeed have a false positive. A Lyme educated doctor may consider that only ONE of the borrelia specific bands, combined with a clinical picture of symptoms, to be a positive – as THESE ANTIBODIES ARE SPECIFIC ONLY TO BORRELIA BACTERIA.

The problem is sadly not false positives, but that there are so many barriers to accurately detect the presence of the bacteria in the first place. But if it is indeed detected by a borrelia specific band, then there is no question that it is borrelia and nothing else.

 

Sorry I don’t remember ever seeing the question of pandas creating false positives in one of your posts, but of course just because someone on this board didn’t give you a response doesn’t mean that there isn’t a response. I mean it’s just silly for you to say that you don’t know what antibodies are involved in PANDAS, but yet say that they may cross react on the lyme western blot – for which the bacterial composition has been mapped extensively.

 

No, quite frankly, it doesn’t seem coincidental that these kids are turning up with lyme. Lyme is incredibly prevalent, with an estimated new 100,000 cases each year. Why would it be strange that people with symptoms of lyme actually turn out to have lyme?

Lyme can present with bullseye rash, and without. Sudden onslaught overnight, or slow-creeping symptoms -- or any combination of both. There are many strains of the bacteria, meeting up with unique immune systems – which equals a highly individualized case for each individual. ( and Both the llmd's I spoke with last week feel positive it is transmitted not just by ticks, but by fleas and mosquitos as well.

 

And to address your earlier post, congenital lyme being passed to unborn children is a sad and documented reality. Sexual transmission is suspected. Does it mean it always happens? No, of course not.

 

I really do not know why you are so defensive and hostile to the lyme posting here. It almost borders on being cruel. But if it bothers you so much, wouldn’t it be better if you just skipped over it?

 

 

 

Pacific Mama...

 

 

I said "may." What I am trying to say is that MUCH is unknown about PANDAS. NO testing is accurate....same as Lyme. Who here can say that the antibodies involved in PANDAS can't be cross-reacting with the Lyme tests and giving a false positive for Lyme???? I have asked that question many times.......no response...there really isn't one!!!!! I wasn't surprised by the lack of response.

 

Doesn't it seem coincidental that many PANDAS kids are testing positive for Lyme?? I personally do not believe all these kids have Lyme....some...but not all. I sway to the "false positive" side of it. Any bull's eye rashes?? A few.(I know...not always present...remember, I was diagnosed with "lyme" 2 years ago and went through extensive treatment...I know all about it) Any SLOWLY EVOLVING symptoms that occur in Lyme? A few. Not the majority.

 

P.s. If ANYONE knew which SPECIFIC antibodies where involved with PANDAS in the first place...we would all be in a much better place!!

 

Also, I am not sure what can be said about a child improving on high dose, multiple antibiotics. Lyme??? Or PANDAS?? Don't some PANDAS kids improve on high dose antibiotics??? Zith.....Amox....etc. What is the difference really????

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Perhgaps it bothers me so much because I had a "Lyme" diagnosis 2 years ago and went through extensive treatment (picc line in arm for one month for IV antibiotics, then one year of orals)....only to still have the same symptoms, but, to a lesser degree. The docs I see now say that my condition was most likely due to EBV reactivation. A year of intensive treatment that was unnecessary!? And, my husband had lost his job 2 years ago (has one now) so, we had lost our insurance and the treatments were not covered!! Yeah.........I got some reasons for it. NO TEST is diagnostic of LYME!!! Any LLMD will tell you that...it is a clinial diagnosis.......but, can't many other illness mimic Lyme? I mean...any symptom you have can be found under Lyme symptoms.

 

Any lab will say underneath the testing that false positives can be caused by other viruses and rheumatic conditions. So, even the labs warn you of false positives...regardless of which bands are present!

 

I had all 3 CDC LYME specific bands (IGM) present (23,41,39)...yet, 2 years later......symptoms are now chaulked up to EBV reactivation (just saw doc the other day)Howe do you explain that???

 

Why is it silly for me to say I don't know what antibodies are specifically involved in PANDAS??? Nobody knows!!! And, since nobody knows....why is it so silly to think that the unknown antibodies involved in PANDAS MAY cross-react with the Lyme Western blot?? Really, I don't get it? Silly????? Why couldn't they cross-react???? So, what is the response to that? Is it possible?????

 

Cruel???? Wow!! How about just presenting something to think about!!

After what I went through...I don't think I'll be skipping over it. I went through it first-hand...got some insight to share. (same thing happened with a friend from church...diagnosed"Lyme" through Igenex...6 months of antibiotics later, and no improvement...she went to another doc...EBV! Put on anti-virals and improved immediately) It would be cruel of me NOT to give my side!

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P Mom,

 

Let's agree to call it a day. Sounds like you have a vacation to look forward to, and I'm sure there are many folks here who are ready for a cease fire. :)

 

I'm sorry for your troubles with your own health. The truth is, it gets very convoluted once the body in under attack by microbes -- bacteria and viruses are found so often in multiples. And then there is the chicken and egg... which came first? The lyme boards are full of people dealing with multiple infections and viruses.

 

I have read what you have posted in this thread about your experience. (although I am still unclear if you have had igenex done on yourself?). I hope you have a good doc to help you sort it out. Since you had the positive test, it's possible you did indeed have the lyme, coupled with EBV, and potentially other co-infections which leave you with unresolved symptoms.

 

Or, maybe it's just EBV all alone.

 

I think, if you were interested, that Igenex could explain how your EBV might factor in if you are going ahead with the test. I believe they also have some way of cross-confirming this or something. Have you ever tested for the common co-infections? All I've tried to say on this board is to use tests, and good docs, to rule in or out multiple infections... as they are so prevalent.

 

NOT TRYING TO STEER YOU DOWN THE PATH OF LYME... just saying that it can get very confusing and complicated.

 

Best.

Mary

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My LLMD ran every test imaginable on me....negative for all co-infections.

 

My Lyme tests are now all negative....so is my EBV panel.

 

I never had a positive IGG response....after being sick for so long....doesn't add up. It even says under the testing from the lab that a positive IGM in a patient that has been sick for over 4 weeks is highly suspicious of a false positive and other conditions need to be looked into.

 

I was sick for 5 months....should have definitely had an IGG response by then.

 

Cease fire??? I wasn't fireing.....where you? (your post was pretty harsh compared to mine.

Just sayin') ;)

 

Just let me ask you this 'cause I still haven't heard a response (then I'll be gone for a week :ph34r: )....Is it possible for the unknown antibodies involved in PANDAS to cross-react with the Lyme tests and cause false positives?

Edited by P.Mom
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Ok, I'm going to throw in my two cents...(and post this same response to two different threads going in the same direction)..

 

It is speculated that the band 41 is a cross-reactive band as Madeleine Cunningham confirmed this "speculation" during our phone conversation last week. I know Lyme is considered a "contributor" to many cases of PANDAS. It is of interest to the many great doctors and researchers who are trying to help our PANDAS children. Just like Lyme is an infectious agent that can cause an auto-immune disease like MS (my own personal battle) why is it so hard for some to comprehend/agree that Lyme can also contribute to PANDAS?

 

P.mom-it sounds like you went through h*ll and back trying to understand and treat what was inflicting you. I'm sorry you had to go through all of that and still struggle. Personally, trying to get my arms around this chronic nuero Lyme that I'm diagnosed with is difficult. I believe diagnosing and treating chronic Lyme is much more a mystery than PANDAS. I do want to reply regarding the bull's eye rash and tell you that according to the Lyme Research Center's website (Dr. Fallon) www.columbia-lyme.org says..

 

"In about 60-70% of cases, a rash may develop at the site of the tick bite. This rash is most often circular with a clear edge, but oblong and other shaped rashes may occur as well in response to the tick bite. This rash is known as erythema migrans or EM. This rash usually starts about 3-30 days after the tick bite. Sometimes this rash is mistaken as a spider bite. In about 18% of cases, the classic well known CDC clinical features of Lyme disease are not present. In these cases, the only symptoms may be marked fatigue and flu-like symptoms. Given that fatigue and flu-like symptoms may often arise from other causes, Lyme disease may not even be considered in the differential diagnosis and the patient may suffer for many months with an unrecognized, untreated infectious illness. Late Disseminated Lyme Disease. If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain). The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling.

 

I hope this information is helpful to you and others. This is an EXCELLENT website to get accurate information regarding Lyme. I love this forum when it offers friendly emotional support to others struggling but get discouraged when folks start debating known medical/scientific information. Why don't we rely on the LLMD's and the many great websites like Dr. Fallons research center for the facts on Lyme and call it good! Unfortunately how Lyme plays a role in PANDAS and other auto-immune disorders is still very much unknown. I know without a doubt I have Lyme (and soon will probably have a MS diagnosis as well now that my MRI is complete). There is no absolute concrete research/scientific evidence that Lyme infection is one of the infectious agents that can cause MS B-U-T the Lyme docs will all tell you that they believe it to be true. They are learning from us going through this ordeal. It stinks that we are navigating mostly uncharted waters. We want clear answers for Lyme, MS, mycro, PANDAS etc..as how they relate to each other but we don't have clear answers.

 

I think what has made SFmom/Wendy so successful with treating her children is the same formula we used in successfully treating Lauren. We thoroughly ruled out possible co-infections and treated the infection(s) FIRST (rather it be strep hiding in Laurens sinuses and/or treating the strep that infected our whole family). Using antibiotics and steroids we treated/weakened the chronic infection that caused Lauren to be so ill for the entire year (2009) and more than likely contributed to her blood brain barrier breach last fall (oct 2009) causing her extreme PANDAS manifestation/sneezing 25,000x a day. Once we beatthis infection down in her (but possibly did not fully eradicate it) we went in with the IVIG to "hit the ball out of the park". This is why I think my daughter is so well/functional (98%) now.

 

Do I think my daughter may have/had a Lyme infection as well-ABSOLUTLEY! We will ever know for sure-PROBABLY NOT! (because she had/has so many different antibiotics for so long not to mention 3 ivigs Im ok with that). I believe Laurens BBB was due to many contributors, the perfect storm . I remember when we first started posting her in the beginning of our battle, it was Faiths badgering me about the vaccines that Lauren recently had prior to her PANDAS manifestation that led me to believe that the vaccines were one of the contributors to Laurens BBB along with the possibility of Lyme/H1N1/strep/stress and other factors. There were lab tests that ruled in/ruled out some contributors/infections but for the most part we were dealing with a clinical diagnosis and we believed in the doctors who believed this was PANDAS and followed their advice knowing that they are also learning as we are going along, doing the best that they can to help us. We worked together to get Lauren and know the rest of our family well.

 

Like Wendy/SFmom we will leave no stone unturned. Even though our children are functional due to the measures we have taken to get them there, we all know that for most of our PANDAS children, they were normal one minute and were gone the next. Im not convinced that we have won this battle BECAUSE (I will say it one more time, again). UNTIL WE FULLY UINDERSTAND WHAT CAUSES PANDAS WE WILL NEVER UNDERSTAND HOW TO FULLY ERRADICATE IT (I stole that last phrase from Dr. B but he said I can have it because I like it so much)!!

 

Ok, now be nice with your comments, dont be hatin, this is only my two cents!

Edited by laurenjohnsonsmom
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Hi all-

 

I just want to add my 2 cents. I have the utmost respect for all parents on this board. We are all fighting for the same thing, to get our children well, and when they are well try to understand WTF happened, and to spare others from traveling the same long road.

 

In the end, you are all right.

 

It is important to have healthy debate, and show all sides of the story. IVIG is not the answer for everyone (I think we have seen that), Lyme is not the answer for everyone. I am sure there are some kids who are diagnosed with both pandas and/or lyme, who do not have it. That is just going to be the case. Some specialists may look through "colored" glasses, depending on what they have seen. I know I do.

 

I DON"T think all of our kids have lyme, and some may not have Pandas. Lyme and pandas are two sepearate things, that may look the same sometimes. A child may have BOTH- and that may be why they do not respond well to treatment for one alone.

 

While I love all of our specialists- they do not know it all- even if they think they do. We, the parents, know the most. The pandas docs, and I am sure the lyme docs are fallible, and are in uncharted territories. Thank God for them- but that doesn't mean we shouldn't challenge them.

 

Wendy and Pmom are awesome contributors to this board, I do not want to see either leaving this debate with hard feelings, or feeling they cannot express their opinions.

 

We all have to look at the board for ideas and inspiration, and answers, sometimes. But- we all know- it is important to verify and evaluate all info looked at online ourselves. I am always overjoyed to see a child is doing well- but I always ask myself- how long has this child been doing well? Until a child has at least one good year of remission, cure or successful management- it is just not enough to go on. Our kids get better, and they get worse- and it sucks.

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