pamsboy

SFMom - how did you do the shedding die off in the urine test? TIA

Hi there, thanks so much for your reply!! Can you tell me what lab you retested through and whether it was a PCR or Western blot or both? We saw Dr Jones and he is testing for babesia through Specialty Labs. We are seeing Dr Bouboulis on Wednesday...thanks for your help!! BTW what did your son have on the Cunningham tests? Pam IVIG is not really contraindicated per se. Yes, we saw Dr Jones and then Dr Bouboulis later that day. They seem to work well in synergy with each other's patients. Dr J says IVIg schedule if any needs to stay on track for the PANDAS. He looks at the Cunnigham test results too. Now the problem is IVIG can stir up stuff again and set you back with Lyme issues is what experienced moms have told me.Dr Kovacevic is in agreement when I contacted him (he did my son's one IVIG)about getting coinfections in check before another IVIG. He wanted even the low Ferritin to be normalized before he thinks of another IVIG for DS. Dr B agreed and we're currently pursuing Bartonella treatment. Dr J says the current ABX will provoke Borrelia Burgdorferi (basic lyme) and Babesia if DS has any and at followup in December he will retest for those. I have posted in the past frantically seeking answers for my sons depleting Ferritin levels, limping, muscle spasms, aches pains, muscle weakness and atrophy and the Pandas/lyme moms on this forum (esp SF mom- THANKYOU for your continued support) have literally helped save my son's life. ALL of our four times of Quest Lyme testing - western blot etc were all negative for 1.5 years. I found out about Igenex, tested and STILL all negative- lyme and all lyme coinfections. I was floored!! BUT I still kept my appt with Dr J because the wonderful angelic moms here told me that Lyme hides very well, it may need to be provoked before testing and also Lyme is a CLINICAL diagnosis by an LLMD. The blood tests are just supporting data. Dr Jones did a THREE hour plus eval on DS and suspected Bartonella. He retested thru another lab that goes deeper than Igenex and yes, DS had Bartonella- very high actually but too deep inside for Igenex testing. I can see a whole new child emerging and I am very grateful to God for pointing me in the right direction. I would be more than happy to help you in any way I can. It would be my previlege. So please don't hesitate. I would be still struggling had it not been for the moms on these forums.

Question, is there a reason why IVIG is contraindicated in Lyme disease? And are higher dosages better than low or medium if not contraindicated? Did you see Dr Charles Ray Jones for your son? How did you diagnose Lyme and/or coinfections? thanks Pam

We saw Dr Jones this past week, and he seems to think he has it, but we are waiting for the western blot results. Our dose was 800mg/kg last couple of times, and 700mg/kg before that. Dr C seems to think his anti-dopamine 1 is signaling although still very high normal.

Was the term akithesia?

We are probably going to switch to high dose IVIG as the lower dose causes the Pandas to worsen right afterward.

He was not in exacerbation during this draw, and it was one month post IVIG. Thanks!

Question: my son had Cam Kinase II results of 183 which is very high. His anti-neuronal antibodies were normal except for mildly high Anti-dopamine 1 of 2000. Anyone know the significance of this, and why the cam would be high without others high? His ASO is sometimes mildly high, and he also just tested positive for Lyme PCR recently. We've done IVIG x 5 but mid dose.

Hi, I did call Igenex and the doctor there said 7-10 days is all you have to wait to get accurate results. We did a PCR about a month after IVIG and it came out positive. Still waiting for Western Blot. Do you think the IVIG could cause a false positive for PCR? As in DNA particles in the IVIG? That would seem difficult to imagine (or at least for me to want to imagine!).

How was Dr Jones so far? We are seeing him on Monday...thanks

Thanks, we are seeing Dr Jones on Monday! And we are already on Zithromax but I wouldnt call it high dose. He does have yeast issues so that's a problem - leaky gut and antibiotics are not a great combo...

Thanks....but how do you know if the lyme is active and needs to be treated or he's just been exposed in the past? And are the symptoms of Lyme the same? Echolalia, complex,vocal and choreiform tics, OCD?

Got back PCR positive for Lyme for my son. Waiting on Western Blot. He has been getting ivig 800mg/kg with exacerbations for about 3 weeks afterward of pandas symptoms. To be fair, we also do solumedrol (iv prednisone) at time of ivig, and for a few days after do 1mg/kg of prednisolone. What is the thinking behind IVIG and lyme not mixing well? Or do they? Is it a potential treatment? And what is the thinking behind steroids and Lyme not being a good mix? thanks, Pam p.s. my son also has PANDAS (we are seeing Dr B in a few weeks) Cam was 183, however he is only ever slightly high on aso. I supposed this could be PITANDS due to LYME?

Thanks! We are seeing him in October..can you be more specific in how he has helped you?

Would Dr B be the best doctor to see if we live in NY? thanks,Pam

Stephanie, who do you see for Pandas? I see Dr R for asd stuff. thanks, Pam

Can anyone explain the thinking behind lower dose IVIG being pro-inflammatory and causing symptoms to worsen? And would 800mg/kg be considered lower dose? My son has onset of rages, ocd, odd, vocal tics after ivig lasting about a month. We've never done higher than that dose. Also which doctor has a good handle on how to deal with this issue? I know there are several people on this board who have had worsening with lower dose - did the opposite happen when you went to higher dose? thanks,Pam

Anyone have any comments? I am in the NY area and want my son to see someone great who can really tell if he has Lyme. If you have Dr Jones contact info that would be great too. TIA, Pam

Hi, just got my Lyme test back - Western Blot from StonyBrook was IgM: 18, 41 58, 66 and IgG: 41, 58. Is this positive? Also, does anyone know Dr Charles Ray Jones contact info? thanks Pam

Anyone have a child who has a specific antibody deficiency and cant mount titers to infection who has Pandas but negative titers (aso and anti-dnase)? Are there any other tests we could get that would help identify Pandas? I have the kit from Dr Cunningham but in it it says it is just for research and we wont know the results of the test. We had heard of the old Immunosciences Pandas testing but know they dont do it anymore - is any other lab doing it? thanks Pam

SF Mom your doctor sounds great. Can you tell us his name or email me privately? thanks Pam

Anne Connolly is a pediatric neurologist at Washington Univ. St Louis and it detects autoantibodies to the brain. Common in autism and LKS. So how did your daughter's autoimmune disease get diagnosed? My son actually tolerates the infusion well because we do it really slowly. We never did the two day infusion of total 1.5gm/kg so are planning on doing that. Has everyone done it that way?

Hi All, my son has had 4 IVIG treatments for a positive Anne Connolly, and we think he has pandas/pitands as well, but has only gotten 600-700mg/kg each time. The last two times he has had an increase in OCD symptoms including compulsions, verbal tics, repetitions, echolalia, mood lability for about 10 days to 2 weeks after the IVIG. He actually has never had positive strep titers but doesnt mount a good antibody response anyway according to his immunologist. Question is: why would IVIG cause a worsening of pandas/strep symptoms instead of helping? Is this typical? thanks Pam