LaurenK

never tried it, I was always interested in it but was afraid due to a possible flare since it can boost the immune system.

I've found myself worse on several antibiotics, yet it was not herxing. My personal opinion is that herxing is put on the table as an option for way too many adverse reactions here. Getting better after stopping a medication could simply imply a negative reaction to the drug such as a sensitivity. Adding it back may not be herxing at all. It may simply mean your child cannot tolerate it for a completely unrelated reason. Antibiotics can affect a lot, especially in high doses or in combinations. Particularly, in very high dosages they can affect gut flora which can aggravate a pre-existing auto-immmune condition. They can also affect vitamin and mineral levels, the th1 and th2 arms of the immune system, and neurotransmitters. They certainly are not harmless pills. I would be very very careful with combination antibiotics and LLMD's unless you absolutely need them. Although many here can attest to better health with them, there is also a lot of negative press surrounding these types of doctors and their overuse of antibiotics. At one point, I believe Dr. J even had allegations against him as well. Despite that they were dropped, to me that is a very big red flag. http://lymedisease.org/news/lyme_disease_views/502.html Augmentin never made me worse but I did certainly feel worse on levaquin, biaxin, and cefdindir, so I do understand. I had weird neurological and psychiatric symptoms while on them. If you look closely at all the side effects, sometimes you can find others who may have reported the same thing, and certainly not everyone has a tick born infection. Imkmip67, I wouldn't give up on the PANDAS route just yet simply because IVIG was ineffective. There are other autoimmune diseases that do not necessarily respond to IVIG but other autoimmune treatments work very well. There are cases of IVIG resistant kawaski's which resolve with IV steroids, pex, rituxembab. etc If you do have chronic infections, you could also look at homeopathy. It does not have as many side effects and has worked very well for some on this board. PS, I have experienced very short lived flares with abx due to dyes in them. I felt immediately worse after taking them and then better within a couple of days. When I order the same drug without the dye, I only felt better right away. Good Luck

Smartyjones did you use engystol for viruses? What did you use homeopathically? Thanks.

I eat kimchi everyday and it helps my PANDAS symptoms a lot.

I would go to the emergency room. If I can't get a hold of my doctors and am having very bad PANDAS symptoms, I go to the NYU emergency room and explain that I have been under the care of a doctor there for about 2 years. They get a hold of him and then treat me.

Im happy that your son is healing. It's interesting that he had the regression week 7 because I thought all the donor antibodies were supposed to be gone by week 6. The children who are having the regressions later interest me. I wonder why they don't react right away. Anyone have thoughts on this at all. Quannie, has your doctor told your anything in regards to that?

Yes, perhaps its best I do ignore these types of threads and I will.

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Thanks Tpotter, but I was actually already aware of the connection there, as I've been dealing with the disease for about 15 years now. I have the genetic marker d8/17 which is often found in rhematic fever. I was diagnosed with mitral valve prolapse shortly after the strep infection which led to PANDAS at age 10. I was told that PANDAS can be linked with heart issues and therefore to get a yearly EKG.

Thanks Nancy, I think that is a very important detail.

Nancy, I was reading your previous posts, but I'm curious, did you do the .4g before the 1 gram. You had told me that 1 gram made her worse, but I'm reading that this is still considered a relatively high dose. Could it be the .4 just aggravated things and the 1 didn't help? Did the very first IVIG help her OCD at all?

Anyone done well with the first couple IVIG's and later during treatment after the 3rd or 4th, had a regression?

I'd go very slowly. I had a bad reaction to it when I tried 30 drops. I'm doing 10 every other day and slowly going up. Maybe all the toxins draining becomes too much for an overactive immune system.

Yes, I was always told to stop all supplements while your body gets rid of all the bad autoantibodies.

I have mitral valve prolapse with a slight regurgitation.

Have you ever tried PEX or IV steroids? Maybe IVIG just wasn't the key. Do they think that he has an autoimmune process going on here? did you get the Cunningham test done?

Anyone try this as a daily drink for PANDAS? There's a study on it in pubmed reducing inflammation daily. http://www.ncbi.nlm.nih.gov/pubmed/22665735

there's really no one else who has had IVIG on here who can possibly share their experience?

anyone??

I am doing IVIG soon. I'm functioning relatively well, about 85%... but my reactions to exposure are awful so my neurologist would like to do IVIG just to modulate the immune response. When you're at a higher place, do you still see a lot of the turning of the pages?

Thorne Vitamin E is a huge help to me. There's actually a drug that's in clinical trials for tourettes that is based from vitamin E. I read about it not that long ago. I only take that and CoQ10 and I'm good.

Ibuprofen around the clock for 4 days prevents a major downfall for me.. also large doses of daily probiotics have helped with re activity and IVIG.

Ophelia, I can't really chime in and help here, but I think its a good idea that you have finding a doctor that's closer to you. It'll make your treatment schedule a lot less stressful