Charlotte Mom

Who is your PANDAS doc?

Does anyone know the difference between these tests and the test Dr Cunningham does?

What about the MTHFR polymorphism? This puts you at risk for heart disease and inhibits your ability to methylate - right? Could it be that individuals with MTHFR polymorphisms are at higher risk for hear abnormalities and higher risk for immune issues - can't fight lyme, strep, mycoplasma effectively, so these horrible diseases begin to attack the brain and case psychiatric issues?

I am noticing a trend. When describing your child's past or current antibiotic use, I have noticed that many have stated that ...."we thought he/she was allergic to penicillin, so we......" We were told our daughter was having an allergic reaction to penicillin when she was three and got a rash while she was sick. It now seems that rash was more likely due to her being sick (RF) than the penicillin. She is not allergic to penicillin. She just got a bicillin shot three weeks ago and no issues. What if all this time, she never was allergic to penicillin and all this time avoiding penicillin just kept her from truly being able to get rid of her strep completely? ... allowing her body to go into overdrive trying to get rid of it ... and causing the PANDAS? What if penicillin is actually what is needed to get rid of the strep entirely? How many of you have been told your child was allergic to Penicillin at some point?

Dr T, I was surprised to see EBV. My daughter tested positive for Hashimotos and I know EBV can also affect Lyme tests. Our whole family tested positive for Lyme. My tow daughters were tested wtih Cunningham and their CamKinese are 168 and 154. I am dealing with so many things my head is spinning. I had not heard about EBV and PANDAS. How do I pursue this - what tests do I need? Could it all come together under that?

My dd11 was diagnosed with PANDAS, we have been treating her for PANDAS. She has very severe OCD. In the meantime, our family in general was suspect for Lyme and I have been growing suspicious of my 8 year old daughter and PANDAS - germ issues emerging, touch, light and sound sensitivity, starting to looser her temper a lot - and over the top. Thus we have run quite a few tests, and here is what we found: My husband is IgG positive for Lyme (Igenex Western Blot); My son and I are both IgM positive. All three of us have positive band 41(IgG and IgM). My two girls were "borderline" for lyme (both IgG and IGM positive band 41). Here is the data I have for them on Lyme and Strep: dd11 ASO: 129 AntiDnase: 181 CamKinese: 168 (tested after 1 IVIG) IgG positive Lyme bands: 31 IND, 34 IND, 41++, all others negative (tested after 1 IVIG) IgM positive Lyme bands: 34 IND, 41+, 58+, 83-93 IND, all others negative (tested after 1 IVIG) *Has had Pnemonia three times, Strep and Scarlet Fever, Chronic URIs, Sinus Infections, Tubes in ears. dd8 ASO: 188 AntiDnase: 163 CamKinese: 154 IgG positive Lyme bands: 41++, all others negative IgM positive Lyme bands: 41++ and 39 IND, all others negative *Has had Chronic URIs, Strep, Sinus Infections, Tubes in ears I would LOVE your opinion on what all this means!! Rght now I am feeling a bit overwhelmed as we are treating the whole family for Lyme and dd11 for Lyme and PANDAS. Could Lyme and Strep both trigger our bodies to create these antibodies that attack our brains, thyroid, and hearts? Isn't it possible that some kids are exposed to both and that is why IVIG and "strep" antibiotics work so well for one and not another? ...that there is a group of kids out there with multiple infections and you have to treat both infections to get them well? Could the Lyme test come back positive if you have mycoplasma or strep - is there something else we don't know about causing band 41 to be positive? Thank you Dr T for continuing to share with us and solicit our information! You are an invaluable resource. Your time, interest and committment is a gift from God. I thank Him everyday for people like you who are willing to help us!!!!

Avoid all of those and sleep will improve?

How does taking antibiotics affect these scores? Does anyone know. I assume the antibodies decrease but does anyone know the timeframe for that?

I know this is so frustrating - I feel your pain. We too are doing every test we can to build the case to keep us on track with doctors. I agree with Buster and others that you should get this testing done. Lyme is very serious. We have started to pursue Lyme treatments, becasue it is impossible to completely rule out - even with a negative test (although we are awaiting the Igenetics test results) and if our DD has Lyme then the PANDAS treatments can make them worse (steroids) or be like throwing a glass of water in the ocean (IVIG). From what I understand (and we are new at this) very strong long term antibiotics are the only way to cure Lyme. You will know you are dealing wtih Lyme if when you start the antibiotic treatments you get the exacerbation of symptoms called a Herxeimer Reaction. I am glad you are pursuing the Lyme avenue as well. Good luck and Please, Please, Please do not leave the forum...even if your child ends up with different issues, we can all benefit from your experience. There may be others of us whose kids have co-morbidities (they may explain why treatments for some don't work for others) or that are even on the wrong path. We would all rather know than beat our heads down a path with "no returns." As dissapointed as you are to still have unanswered and now even more unanswered questions, you are moving forward on your journey. I know your son is frustrated.... my daughter practically refuses to go to doctors anymore. I have started to have her see someone - not for ERP or anything... just someone to talk to about how she feels about this frustrating debilitating path she is on. The person she see's is just for her - I don't go in... it's not another doctor appointment that Mom is dragging me to, but rather her appointment, her time wtih this person she actually really likes and feels like understands her. the doctor has done wonders with helping her understand that it's not her fault she hasn't been able to get well... and to understand how there could be so many doctors out there that just don't understand how to help her -which is a scary feeling for a kid! Hang in there!! I do have some questions for you and Buster. We have been told to do a sleep study on our daughter - we did the sleep deprived and were told no we need the overnight one.....I hadn't heard about three days... I am curious - you mentioned three days of EEG... what is this? Buster, you mentioned MRI for ADEM, checked for demylination and functional MRI. I have not heard of these. When would one want to get these and where and how would one check for these? Worried Dad (I believe) mentions PET scan. What is the difference between PET scan and MRI? Does anyone know?

who is Dr B? I will be curious to see what Dr T says about Lyme. Did you see his write up that he posted for us? He talks about Lyme and PANDs. Buster did a chart on it. There is something to this Lyme and PANDs for the kids who are not slam dunks to 'fix" I think... whether it's causal or a co-morbidity...

My dd12 recently had a positive lyme test. We believe she has PANDAS and lyme since her lyme results indicate a recent infection, but she has had tics on and off for several years, many positive throat cultures, elevated titers, and exacerbations which have correlated with strep exposure. It would explain why, though, she has been unable to get over her most recent exacerbation which began in June 2009. She was given 6 weeks of zithromax with initial improvement, but then a backslide with a cold. She was recently switched to Omnicef. If that doesn't help, I've been told IV antibiotics may be in her not so distant future as well as IVIG (although insurance doesn't cover for lyme either). Who is your doctor who is helping you with the Lyme and the PANDAS - is it the same doc?

Wow...I've not heard of taking both at the same time. Are you seeing any significant results? My dd is taking them under the direction of Dr. T. She is improving slowly, but surely. The difference between today and two months ago is astounding, yet she still has a ways to go. It is definitely a sawtoothed recovery. Each time her immune system is stressed she backslides for a few days, though never as bad as she was this fall. Advil is still helping a LOT, as I found out when she did a steroid burst and I stopped the Advil. Got to run. anything else you want to know, just ask. Angela Is he thinking Lyme might be causing the PANDAS? I think the high doses of multiple antibiotics is typical of a Lyme treatment. Did your dd get an IVIG? How much Advil is she getting and how often. I gave my daughter 400mg of Advil and wham what a difference. I did this twice then the third and fourth time didn't seem to work, so I stopped. Is that just temporary relief... works initially and then stops?

What did Faith's post say?

Can they tell if there is strep in the adnoids after they take them out?