IVIG not lasting because of chronic infections- question

[LaurenK]

I read a lot here about tackling the underlying infections before IVIG can fully work... or that those who have underlying infections relapse when the IVIG wears off. I was wondering if any of this is actually proven scientifically? Or is this only what parents have observed? Have you thought that in some instances IVIG simply didn't last for genetic/other immune issues? I ask because it seems like the many people jump to the chronic infection piece very quickly and it's a very expensive road to travel.

 

There are cases where IVIG doesn't work in other autoimmune diseases but steroids do. When IVIG is ineffective, there's no such discussion on other forums about " the chronic infection piece." There have been IVIG resistant forms of kawasaki's disease as well or MS, etc. but no discussion on the topic in regards to an ongoing illness.

 

Just curious of people's take on this.

Edited June 16, 2013 by LaurenK

[EmilyK]

Good questions - following

[sf_mom]

Honestly we didn't "jump" to chronic infection after PANDAS treatments..... We took a very long time to head down that path because our older son was serologically negative for Lyme via Igenex and he had fairly good success with PANDAS treatments of hdIVIG.

We eventually had to checked intensely for other things that were not checked in advanced of PANDAS diagnoses/treatments because he was beginning to regress 6 months post his last hdIVIG. He had blood in his stool for 8 weeks by the time we finely saw an LLMD. Rather than look for antibodies we ran the Dot Blot Test via Igenex for Lyme which looks for antigens of the Borrelia in the urine. It is a test that is 98% accurate when positive 'like finding DNA match to Borrelia'. He was positive. Our LLMD also found parasites in stool, yeast, EBV, HHV6, Coxsackies 'all strains', KPU, Vitamin and Mineral deficiencies, biofilms, methylation/detox issues, environmental toxins of lead and mercury and we currently suspect bromine, florides, chlorine derivatives. We did not find positive results for bartonella or babesia but he had many of the clinical symptoms inclusive of periodic rashes associated with bartonella and babesia. He has also clinically improved with treatments and will be entering his 4th year of treatment in the fall.

Our two younger children who were 2 1/2 years old when we realized there was something wrong but they did not have classic PANDAS onset. One twin was slowly losing her language ability after MMR with many odd rashes but had no OCD just high anxiety if anything. The other twin had obvious OCD, rage behavior, sensory issues, heart issues. One twin thankfully does make antibodies and came up positive Babesia and Bartonella and IND for Lyme plus many other things. They have never had steroids, they are immune deficient and we have not treated them with IVIG.

I am PCR positive for Lyme but we ran more than one type of test for Lyme to confirm diagnoses. We did want to be sure it was the right diagnosis.

I do not wish anyone to have to go down the Lyme - chronic infection route. It too is a tough haul. It is expensive and not easy to fix. BUT for our family it was absolutely necessary to all our children's well being. They each have a medical file that is 3 1/2 inches thick. We have ran numerous test over the last 3 years. We have two LLMDs and a Dr. who specializes in treating ASD biomedically. We are currently going through chelation for mercury/lead and detoxing bromides/fluorides/chlorides. Thankfully two kids look fairly close to full remission, one is still struggling because she is dealing with 4 additional metals. I have spoken with many families over the years with gestational Lyme and have met children now in their twenties living very full lives off antibiotics. Sadly it was never an easy fix for any of these families and some were on antibiotics for 6 or 7 years. We are prepared to also treat as long as we need.

For our family, it was so much more, looking back it was a perfect storm when our son's immune system failed... I will be forever grateful to all those that helped our family even our PANDAS Dr. because each intervention has gotten us to this point. I wanted it to be simple, I wanted PANDAS treatments to work, we were even told our older son was a mild case of PANDAS, I wanted my kids to be fully well by now.... It just wasn't that simple.

EDIT: A good book to read on chronic infection: Plague Time, The New Germ Theory Of Disease by Paul Ewald. It might help with understanding how medicine is changing, why some things have been ignored and how chronic infection et al is now being implicated in many illnesses. Published 2000

Our younger son was diagnosed with Kawasaki's at 5 1/2 months old. He was a changed child after diagnoses and until we treated for chronic infection. Kawasaki's share 91 common symptoms with RF. Those that suffer from Kawasaki's do not typically check for chronic infections and it is not considered to be an ongoing autoimmune illness either. We still have great concerns over his heart related issues due to Lyme, Bartonella and Coxsackie's infections. All of those infections can independently impact the heart.

Edited June 16, 2013 by SF Mom

[T_Anna]

Our IVIG never really showed great improvement. There were minor improvements though. Less rages, eyes no longer dilated, reduced OCD. But I do believe that there is something else going on and that we had treated his infections long enough/aggressive enough to allow the IVIG to work. Many people on the forum stressed that getting those infections down was important, but we ran ahead anyway and the results supported the forum opinions that we ignored.

 

Just our experience.

we also have a son who probably suffered fromPANDAS since he was at least 9, but maybe even 2. He is now 15 and was only diagnosed in November 2011.

 

T.Anna

[Mayzoo]

We are trying to cover all our bases before we decide to proceed with IVIG. Unless IVIG can cure HHV-6, coxsackie, EBV, Ruebella, etc, why would I spend thousands of dollars on it until we had her other conditions under control? So far as I know, IVIG is not listed as a treatment for her other issues. To me, it makes sense to resolve as many issues as possible prior to trying to "reset" or boost the immune system. Might as well give the procedure as much chance at success as possible.

 

I think the rational to looking for more conditions is many of the PANDAS kids are immune compromised, so the likelihood of another condition being present is pretty high. If you are not seeing success with any normally successful treatment modality, or if a successful treatment protocol suddenly regresses for long period of time, then IMO should consider that maybe more is going inside your kiddo than what you are of.

 

Our kiddo is lab confirmed immune compromised, so if we can get her in a good place without IVIG then we will, otherwise she may need regular infusions anyway.

Edited June 16, 2013 by Mayzoo