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Pans/Lyme doc


cdnmom

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Hi all, had phone consult with Dr. T. (NJ) to go over ds8 bloodwork results. My 3 children plus myself tested positive for Myco P. which Dr. T. is treating with abx. Ds also got a PANS diagnosis (after 6 months of trying to figure out what was going on). What is throwing me off though is that ds tested positive on 3 Lyme bands on the Western Blot(P23, P41, and P58). Dr. T. is not concerned about this but I am worried. I have a suspicion that I have Lyme, because I have been feeling horrible for over 2 decades now (extreme fatigue, chronic diarrhea for 8 yrs, chronic headaches, hair falling out) for which I've had numerous tests done, but no answers. I have never been tested for Lyme. I understand that band 23 is Lyme specific but I'm not sure why you need to test positive on 5 bands in order to get a Lyme diagnosis. If he's tested positive for 1 band that is Lyme specific, does that not mean he is in infected?

 

I don't feel comfortable just letting this slide so I am looking for anyone who has a good LLMD for children who also understands PANS in the Buffalo area (we're from Canada). Or anyone who may do phone consultations would also work.

 

Thanks

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I would not let it slide especially given results, symptoms and positive mycoplasma for entire family. I know our LLMD in CA would be happy to review results and make recommends regarding additional tests via phone (possibly co-infections, etc). They can not prescribe anything however until you are a patient, history has been fully reviewed and there is a physical examination. You are welcome to PM if you are interested in getting a second opinion on 'just' test results.

 

There are also two wonderful Dr's fairly close that I think could also help with results, further testing and have a wonderful grasp of PANDAS and Lyme. Dr. Steven Bock or Dr. Kenneth Bock in Rhinebeck NY.

 

You could also take 'yourself' off antibiotics if on them and run the Advance Lab Culture for Lyme to confirm if you are positive. http://www.advanced-lab.com/spirochete.php I think your results could be very telling potentially for the rest of your family. However, I understand the tests only picks up about 80% of those truly infected with Lyme, it still misses about 20%. So, a positive is very meaningful but a negative could mean they just missed the spirochete in the blood.

 

For us, understanding Lyme et al was involved has been critical to our successful treatment of our PANDAS/Lyme son.

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Dr P is the only ILADS recommended LLMD in the Buffalo area according to CanLyme. She is also a pedi that feels DD10's PANS reactions are due to her lyme/bart infection and will resolve with proper treatment. We have not investigated strep involvement, although DD's ticcing does upswing with strep infection. We have not tested Aso. DD's ticcing and other PANS symptoms resolved with biaxin/rifampin, would return with the discontinuation of one or the other and have really made an upswing (along with bart pain) with the addition of tindamax.

 

 

Dr McS in Plattsburg NY is another ILADS recommended LLMD. I am not sure if she does phone consults. I will take more time to answer your PM this weekend.

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What is throwing me off though is that ds tested positive on 3 Lyme bands on the Western Blot(P23, P41, and P58). Dr. T. is not concerned about this but I am worried.

My son, 17, was originally a patient of Dr. T beginning in October of 2010. I will forever be indebted to him for treating my son so compassionately during the most difficult time in his life. He showed great, great compassionate and was wonderful in treating strep. He was able to quickly get rid of the "worst of the worst" of my son's illness. He listened to me cry more than once. He fought to get PEX for my son from Dr. Elia at CHOP (though it was in vain). However, he was not able to get my son anywhere near better. He got my son maybe 30% better.

 

With all due respect to him and the genius that he is, he is not qualified to be making a call on your child concerning lyme. It is not his expertise.

 

My son originally had bands P23, P66, and P41 on his western blot. Dr. T was not concerned. He treated my son aggressively for strep. In the end, my son had lyme. Dr. T was wrong in his original diagnosis and eventually admitted so. His exact words were, "I can't believe it, but your son has lyme."

 

Additionally my son had parasites (hookworm) which were only found through a Metametrix stool test that I asked for (he did not suggest it, but did order it willingly). Dr. T treated the parasites for three days--did little good. In the end, my son saw another doctor who treated with antibiotics for six weeks to completely eradicate the parasites. Slowly my son started improving.

 

My son also tested positive for KPU. Again, I asked for the testing, not Dr. T. He said he was willing to treat this if I couldn't find anyone else, but said he had never treated anyone for it before. He said it could better be treated by a naturopath. (A lyme doctor would be very familiar with KPU (if he's not, I'd pick another one) and would have seen a lot of it.) I eventually went to another doctor for treatment. My son started improving more.

 

Now my son is being treated for EBV and CMV as well as re-occurring strep. He is at about 60-70%.

 

Please keep pursuing lyme (as well as parasites, KPU, viruses) with a lyme doctor. You can still keep Dr. T as a doctor. He will in no way be offended. He is one of the most humble people I have ever known. And he will order any tests you ask for. That alone made him an invaluable doctor to me.

 

Please also know that my son shows NO lyme symptoms, and I have never seen a tick on him. He is also asymptomatic for strep. His only symptoms are and have been SEVERE OCD.

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I have to second Christianmom's assessment and also SFMom's recommendations on the Bock brothers.

 

Christianmom - re: the EBV - google l-lysine for EBV - worked like a charm for my DD's EBV this past winter after nothing else touched it. Also check out the selenium link I listed on the lyme forum.

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Just want to agree that to disregard Lyme is not good advice. Take it from someeone whose kid is in Lyme h&^%. Lyme in most cases does not get better without aggressive treatment. Actually it gets much, much worse. Not to freak you out or sound too alarmist but the Lyme bacterium is a spirochete that multiplies and literally invades the body, it can cause problems from headaches to vision issues to suicidality to even paralysis in some extreme cases. My daughter is in month five of treatment and is still in significant pain. If your child has Lyme they also may have co-infections, which can be even worse and may require different types of medications. I am pretty shocked that a non mainstream doctor gave this advice, even my ignorant pediatrician treated my DD when she first tested positive.

 

Regarding the bands, this is outdated CDC advice - 3 igg bands can be significant, and in any case Lyme dx is a combination of a clinical diagnosis and blood work. In her book Cure Unknown Pamela Weintraub gives a detailed background on the testing, the bands, why the guidelines are wrong and the conflicts of interestd of those that developed the guidelines.

Edited by Hopeny
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Thank you all for your reponses....my gut was just telling me that I could not let those positive lyme results go without question. We had the Western Blot done through Quest and it says "IGG WESTERN BLOTS WHICH HAVE 5 (OR MORE) OF THE 10 SIGNIFICANT BANDS ARE CONSIDERED POSITIVE FOR SPECIFIC ANTIBODY TO B. BURGDORFERI." Since ds tested positive to only 3 bands, he does not fit the "criteria" and my feeling is that this is what Dr. T. was looking at, coupled with the fact that band 41 is non-specific and he also thought band 58 was non specific. It's just surprising to me that so many of these Pandas kids have Lyme issues and so many have gotten relief from Lyme treatment and yet doctors are still reluctant to pursue.....hhmmmm. I will definitely keep seeing Dr. T., he is an extremely valuable part of my son's healing.

 

BUT.....I will also pursue Lyme, thanks to everyone's help here. I am almost positive my results will also turn out positive....Lyme can be transmitted through the fetus and so I will also need to test my 5 yr old twins.

 

I will look into the Boch brothers.....hope they are not too far from us.

 

Diane

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Christianmom - re: the EBV - google l-lysine for EBV - worked like a charm for my DD's EBV this past winter after nothing else touched it. Also check out the selenium link I listed on the lyme forum.

Thank you LLM, I'll check out l-lysine and read the selenium link. The doctor prescribed this for my son's EBV and CMV:

 

Monolaurin by Ecological Forumula (4 capsules/day)

Total VR-x by Nutri-West (4 capsules/day)

Goldenseal by Standard Process (6 capsules/day for two weeks only, then stop)

 

My son's been on this protocol for a month, so I'll see how he tests for EBV/CMV at his next visit. He has been improving, but I think it's from the 30 days of minocycline that the doctor also put my son on.

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