LaurenK

My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione.

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme. From talking to her, I didn't have the impression that she believed chronic Lyme was a real disease. I did not think that she pursued treatment. She is no longer on this forum. I had looked for her originally when I did a trial of TSO for my son. The statement was about my daughter. My DD did not have any GI complaints while on combination antibiotics to treat lyme & bartonella. Some of your similarites reminded me of pandas16, including the post of the fecal transplant. She did not believe in chronic lyme. Do you? I am unsure. It seems like the CDC is very different than ILADS and it's confusing to me. I don't know who to believe... but I do know that all Lyme/PANDAS symptoms went away with the fecal transplant... so that leads me to believe more that inflammation is a driving factor rather than chronic infection.. How can you say your daughter had no GI problems if she has an autoimmune disease. That's like the #1 HUGE, BIG FLASHING LIGHTS indicator of a gut issues.

I guess I should have said she had no GI complaints while on antibiotic treatment for lyme. From talking to her, I didn't have the impression that she believed chronic Lyme was a real disease. I did not think that she pursued treatment. She is no longer on this forum. I had looked for her originally when I did a trial of TSO for my son.

Iowadawn, I don't have any specific information on what you are asking. (i'm sorry) but I'm curious how long have you been on this Lyme Bartonella path? Charges sound serious.. if it's not working maybe try something else?

My son has a diagnosis of Aspergers and I notice a distinct difference between his aspergers and PANDAS. PANDAS is abrupt sudden onset. Aspergers in our case was not.

I actually did speak with her on a facebook group. Thank you though. I think to say your child had no gut issues but then to say she has an autoimmune disease is kind of contradicting itself? no? Antibiotics can have a lot of anti-inflammatory effects. Are you sure the improvement is not thanks to that?

I'm sorry, I don't mean to sound defensive here, but: I spent 2 solid years working with this child on strict special diets, all natural treatments, NO antibiotics. Still could not 'fix' her gut. Half way through those 2 years, worked with a famous DAN! as well, in an effort to heal this child's digestive system. My belief now leans toward I will never fix her gut, really, unless the heavy metals and Bartonella can somehow be eradicated. Or, maybe, this will just be the cards we are dealt. But you have no idea how hard I tried, for years, way before she was ever put on antibiotics (and she was never on them as an infant or toddler.) I'm sorry- I am sure you mean well- But we have some grave, serious underlying issues. For us, we needed a fecal transplant and then the rest fell into place. You could try this for metals. Its more gentile http://www.worldwellnessstore.com/catalogsearch/result/?q=detoxosode+metals

You cannot fix the gut while on antibiotics. It's not possible.

Maybe go back for IVIG. We are working on fixing the gut. I know many going down the Lyme Path are looking at that for a final answer but really, no one knows yet. Might be better to stick with PANDAS treatments.

How long do they last and what did you do about them?

has anyone sucessfully done this? My PANDAS child reacts to EVERYTHING.

We have done IVIG with suspected Lyme and had success to about 90 percent. We stopped at 90 percent. He still has symptoms but we can manage them with about 10 supplements. He has friends again, and is doing well in school. We were told that IVIG does not become less effective as you age. Essentially, with all the herxing and nightmares that Lyme can bring, we felt it was not worth it for ONLY 10% more improvement, especially with the huge autoimmune pipeline and new drugs which will be available in a couple of year. There is no cure yet for PANDAS or any other autoimmune disease. Tackling Lyme does not prevent strep from being a problem down the road. Be very careful from what you read here, just because a doctor wrote a couple of articles on Lyme doesn't mean it's true. Before something is accepted in the medical world it has to go through rigorous double blinded placebo tests.

. When symptoms continue even after a repeated course of antibiotic therapy, this could be due to the fact that an activated immune system results in a change in neurotransmitter functioning. As a result, the altered neurotransmitter function may contribute to ongoing depressive symptoms, even after the immune system is no longer activated. Just because the immune system is no longer activated by an infection doesn't mean that all auto-antibodies produced by the infection are gone.

How many and which supplements do you give? We give my son about 10...just wondering how many others give? We feel like ten is a lot but don't know how to narrow it down!

Prayers, have you tried ibuprofen around the clock? or at least for a ride?

Do probiotics need to be rotated LLM? Do you know?

We use bodybiotics.

Do you think it's related to PANDAS/asd? Some people do just talk to themselves sometimes.

Our son just had IV steroids, 3000mg/kg pulsed over 3 days. Excellent results. Stopped a severe two year flare in a week. An older member who is now no longer here had them too.

Our son just got admitted and we got it covered under encephalitis even though he supposedly has PANDAS. The neuro whom we are working with is very into the NMDA stuff. If you read this article http://f1000.com/8406956 it explains that there are varients of it and that PANDAS might fall into that category. our son just had 3000mg per kilogram over 3 days. he was very severe before now a week later he's almost back to normal. We had a tiny worsening before better. if I remember correctly, your child had steroids too? was it the same dosage? How long did the effects last? From reading I saw that one other person on this forum, PANDAS16, had the same treatment and it lasted over 10 years?? I have been trying to get in contact.

We were just told that PANDAS is a cousin to anti-NDMA encephalitis and the root problem in PANDAS may be a microscopic tumor on the ovaries or testicles which somehow opens the blood brain barrier-- then any infection can set it off like strep, mycoplasma, etc.

glad your son is doing well

Wondering how many here actually had a positive bartonella test? I read that bartonella can turn off antibody production.

You could try Dr. Najjar at NYU Langone. Do you mean he was tested for HIV? There is no "AIDS" test I don't believe? Was HIV thought to be an issue? Why is this young man living with 30 birds?? and in such a unhealthy environment?