P_Mom

Abx., t/a removal, steroids twice for younger son (which were amazing) That is it. I'd give them a multi vitamin, fish oil and probiotics a few times a week too.

HI! I have been gone from this forum for years, but, received an email notification that I was sent a pm! Imagine my surprise. So I browsed a bit and found this. I will just briefly say that I have (had ) two PANDAS boys. Onsets age 4 (severe) and 7 (mild/moderate). This happened after they both had strep in August 2007..... onsets were weeks apart. Our world was turned upside down....to put it lightly. Fast forward 7 years. Ages 11 and 14 now and BOTH sons are absolutely thriving......not even the most seasoned PANDAS parent would ever guess in a zillion years either of my sons ever had an issue. Hang in there. Time is your biggest healer.

Wow...IGM is also very negative. Only 41 showing which is very common in general population, largely due to "normal" oral flora. You have negative labs for Lyme...both IGG and IGM. This is not a test for Bart....was there other testing done?

Trintiybella, That is a negative test result. Doesn't it say negative on the report? You are giving IGG results...there should be another one, an IGM one. But, anyway, the asteriks are marking the more Lyme "specific" bands, however some are not specific to Lyme, such as 41. The plus or minus next to the band is indicating if it was positive or negative. One plus is a low intensity result.....then it goes up from there.....2 pluses indicates a more intense response, and so on....it goes up to 4 pluses. You have two positive bands, low intensity...both non-specific for Lyme....that is a (very) negative test result. FWIW.....IGENEX considers IND bands to be negative. So, if you had all band show IND, the company would report a negative result. Just stating facts. BTW, I have not been on here for a very long time and the new format is something foreign to me. I can't find your pm! I'll keep looking.

Please do, trintiybella. I have lots more to share.

Yes, it absolutely can be wrong. The test result reports themselves indicate that a chance of a false positive IGM result is high in individuals with symptoms lasting more than 4 weeks or so...(even IGENEX states that) IGM easily fluctuates between positive and negative due to cross-reactivity. Mine does that.....one month positice (IGM only by CDC)...the next negative...and so on...never positive IGG though. If you have been treating a positive IGM, and that is what you are referring to being positive and then negative, I would suggest seeking further opinions outside of LLMD's. A positive IGG is much more diagnostic for Lyme etc. My suggestion would be to start with a clean slate (mind)..... get the test results in your hands and do your own research according to those results without posting them publicly because you can easily be swayed.......seek opinions from docs...both a LLMD and an infectious disease doc.....you gotta look at both sides....weigh carefully...and then decide.

Well, I need Dr. L for the same type of care as you, nothing major, just abx and follow-up and to be there if things went south. I paid almost $1000 for initial visit (2 kids)...and follow-ups have been $500 and we go once a year. Hope that helps. (and remember this is for 2 kids...so divide it)

Hi JPDad, This is the first one. I guess time will tell if it continues or not. I am not the organizer of the event....just the messenger. Too bad you can't make it...but, I will be sure to let you know if there is another one.

Friday, Oct. 26 at 7:30 at the Panera Bread in Robinson. 295 Settlers Ridge, Groveton, Pa Hope to see those from the 'Burg there!

Philly....do you or your husband get migranes or alot of headaches? My younger son gets them....myself or older son do not. Dr. L pushed on a part of my sons head in the back and made him cry in her office. It is always behind his eye or left forehead. She said one of the nerves is inflamed. Husband gets migranes a lot so she said it can be hereditary. He does not have them constantly though and advil does the trick when he does. I always thought it was because of his BAV, maybe, maybe not.

. sorry..double post

Philly...but didn't he also test positive for strep? Anyway....my vote is no.

OH MY WOW!! I got the SAME call today from them!!

UGH! I have a ticcer PANDAS son. (who had ADHD symptoms as well at initial onset) This makes me angry ....what is going to happen to the ticcer kids?? Ignored? Undiagnosed? Left to suffer? I also have a PANDAS son who presented with the works...OCD, tics, anxiety, hallucination, etc. If it weren't for his presentation, my olders son may have likely never received proper diagnosis and treatment. Both presented 2 weeks apart from same strep infection. Neurologists at CHP told me they were on path of Tourettes and come back in 4 months and we can medicate. Hummmm..BOTH boys suddenly developed Tourettes at the same time. I think not! Never went back. Got a PANDAS diagnosis and treatment and my older sons tics basically went away in 24 hours......bumpy for a couple years (mild) with illness...now in remission for almost 2 years. No meds except abx. I was told by Dr. C znd Dr L (in MD) that if my older ticcer son was not properly diagnosed and treated...he would indeed, most likely, have ended up with a Tourettes diagnosis. Dr. L does not require OCD, he is our treating physician. Personally, I would not accept the diagnosis of TS just yet....seek second opinions from other experts. Improvement with Penicillin and backsliding off.....big sign of PANDAS.. and also a hopeful one because your child...at this point, is still responsive to abx. Don't lose that window. (Penicillin is largely not effective in symptomatic PANDAS kids....it works for some, but, I would surely use a stronger abx) TS because he does not have OCD! Ugh.. that just breaks my heart....(and I know PANDAS diagnosis exists....aside from PANS...but, you can clearly see how they are all interchanged and things will just get worse with all the docs mixing it all up)

Both my sons had titers for Pertussis run...they certaintly do exist! I would find a different doc.