IVIG- when to consider?

[mommybee]

While true that the NIMH has done research using IVIG, Dr. Swedo has also stated her personal concerns about IVIG on more than one occasion. I have heard what she thinks with my very own ears at conferences I've attended. She is more comfortable with PEX than IVIG because of the risks involved with using pooled blood. Obviously, every doctor draws the line in a different place. But given the issues of using pooled blood and the lack of evidence based research to indicate that it is a effective treatment for Lyme disease, I wonder whether other treatments might be more desirable.

[nitshel]

jan251 - I couldn't agree more. We are seeing marginal improvements in DS. Makes us wonder what we might be missing. I'm not so sure about parasites - we've thrown anti-virals, antibiotics, herbs at this and have had limited effect. This is why we are considering some kind of auto-immune issue - its the logical item we have not addressed head-on.

 

We' ve just started back on Rifampin - DS had been on Buhner for the past few months and off Abx - until this flare. We are at a loss to explain where this came from - perhaps someone is a Step carrier and gave it to DS? Perhaps the Lyme/Bartonella re-awakened? Who knows...we;ve been fighting this nearly 4 years and it always seems the disease is one step ahead of us.....

[jan251]

nitshel, aside from dealing with infections and somehow addressing the root of the immune disfunction (and surely these are important pieces), to the extent that there is an "autoimmune" angle, I am looking for the "off switch." For my ds, both infections and immune issues pre-date the sudden onset of OCD by years, with low levels of lingering nervous system effects. Then the on-switch was flipped.

 

It seems to me that IVIg is a bit of a blunt instrument when we have no idea what the off switch might even be and whether IVIg can trigger it or whether IVIg is merely a temporary fix. If I were certain that IVIg would fix the OCD on a permanent basis, it would be a much easier choice.

[nitshel]

Agree jan251 - in DSs case looking back we see that his immune function was sub-optimal given the numerous ear infections he would get every year.

What confuses the heck out of me is whether his immune system is too weak (and allows unchecked infection) or too aggressive (autoimmune issues). It can't be both ways - can it?

[jan251]

I'm pretty sure it can be both ways. For one thing, some infections, the lyme/bart/babs in particular, are good at using the immune system to hide behind, as described in Buhner's books (if he is correct). The immune system and its interactions with the body's cells and other processes on a molecular level are extremely complex, very very far beyond a few handfuls of immune cells.

 

Most importantly, while there are some theories, I'm not aware that there's any evidence at this point of what the precise mechanism is in PANS/PANDAS. It may not simply be antibodies/immune cells acting directly on the basal ganglia but involving other molecular/cellular process(es) (e.g. how is CamKII related, directly in the causal chain or merely correlative?). If anyone has heard anything new, or wants to discuss the possible theories here, feel free - I would definitely interested to hear what others think or have found. (I am only now coming to a point where I have gathered some background thoughts to go back and read works by Cunningham and Swedo, for example.)

Edited September 21, 2015 by jan251

[dasu]

Its way over my head but it may be possible that its both ways. One item of discussion with our new ND is Th1 Th2 balance. Autoimmune have an overactive Th1. He has talked about trying to introduce meds to balance.

[nitshel]

I have asked a question related to what's happening with DS on another thread. Basically his CamKII was very high on the Cunningham Panel. So basically that means there is a cytokines cascade , antibodies have been triggered by something and the immune system is attacking the basal ganglia.

As the point has been made there are so many moving pieces here - inflammation, underlying infection, autoimmunity, cytokines... It's hard to find what the "off switch" is - perhaps there are multiple switches ...

[sf_mom]

You might also look at LDA/LDI shots for your son. Here is some information on them. One of our Dr.'s is having great success - about 30% see huge improvements. Individuals off antibiotics have greater success. My younger DS and I both do them for Lyme et al and yeast. My son in on pulsed antibiotics 10 days out of the month during full moon and only does the shots when he is not taking antibiotics.

 

I can also put you in touch with someone who's daughter was not having great success with antibiotics for treating Lyme and is doing much better with the shots. You are welcome to PM me. I will still check him for mold as well though.

 

http://imcwc.com/html5-blank/low-dose-allergy-lda-therapy/

Edited September 22, 2015 by sf_mom

[nitshel]

Thanks sf_mom - we will certainly check it out. Is this treatment covered by Insurance perchance?

[jan251]

You might also look at LDA/LDI shots for your son. Here is some information on them. One of our Dr.'s is having great success - about 30% see huge improvements. Individuals off antibiotics have greater success. My younger DS and I both do them for Lyme et al and yeast. My son in on pulsed antibiotics 10 days out of the month during full moon and only does the shots when he is not taking antibiotics.

 

I can also put you in touch with someone who's daughter was not having great success with antibiotics for treating Lyme and is doing much better with the shots. You are welcome to PM me. I will still check him for mold as well though.

 

http://imcwc.com/html5-blank/low-dose-allergy-lda-therapy/

 

 

Just so I understand, when you say success, are you referring to abatement of traditional lyme symptoms (e.g. joint pain or whatnot) or abatement of OCD (as in PANS)?

Edited September 22, 2015 by jan251

[sf_mom]

Both:

 

I have chronic lyme and in general just feel 'better'.... like a normal person when I do the shots. I am back to my old shelf prior lyme disease. I was treated for 3 years with antibiotics and have been off antibiotics 2 years. I still do a lot of maintenance therapies to keep Lyme in check: IV Nutrients, IV Chelation, PK Protocol and LDA/LDI Shots.

 

Our younger son has no notable symptoms and had rage behavior, OCD, sensory integration, Asperger's, heart issues, PANS. Most of his symptoms resolved with 4 years of combination antibiotic therapy. However, he too just seems better when he does the shots. Doesn't regress at all when off antibiotics.

 

Friend's DD diagnosed PANs (Lyme et al) is off antibiotics and has seen improvement in OCD since starting LDA/LDI.

 

Our LLMD that provides LDA/LDI has all kinds of patients with variety of improvement. He feels about 30% who receive the shots see tremendous improvement across the board even psychiatric symptoms.

 

Hope that helps.

Edited September 23, 2015 by sf_mom

[sf_mom]

I do not think it is covered by insurance (I have not filed with our insurance yet). I think each shot is about $80 and depends on how often you do them. We do one every three weeks for both my son and I.

[nitshel]

So we tried to get into Mass General - we saw on the website that Dr. Geller was taking new patients. But then we got a call from the hospital saying that they will only accept patients who are patients of Mass Gen or affiliated hospitals. We are in Northern VA.Any ideas on how we can get DS into the program? Please post or PM me. Thanks!