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hugs2day

If Lyme does IVIG still help?

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For months I wanted IVIG for my PANS children and could not get it approved, now the neuro treating PaNdas is offering it and telling me he has good success getting it approved, but I am apprehensive because I have added LYME to the diagnosis of PANS.

 

What is the opinion of this forum and especially the opinion of the LLMD's you all see. I am still waiting for first appointment all I have in my arsenal is my own research which is conflicting on IVIG. I have read the old... oldest posts on the PANDAS forum and it seems quite a few families used IVIG prior to realizing LYME was an issue and outcomes vary. Please share your experience. Thank you so much.

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For months I wanted IVIG for my PANS children and could not get it approved, now the neuro treating PaNdas is offering it and telling me he has good success getting it approved, but I am apprehensive because I have added LYME to the diagnosis of PANS.

 

What is the opinion of this forum and especially the opinion of the LLMD's you all see. I am still waiting for first appointment all I have in my arsenal is my own research which is conflicting on IVIG. I have read the old... oldest posts on the PANDAS forum and it seems quite a few families used IVIG prior to realizing LYME was an issue and outcomes vary. Please share your experience. Thank you so much.

 

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.

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Our personal experience, before we knew about Lyme and co-infections being present, we had 2 high dose IVIG's.

The first one did nothing (we were in the same nightmare). It was a big herx. I had a PANDAS/DAN Dr. that was our primary and prescribed it, and then I had another PANDAS Dr. on the east coast with whom I was phone consulting, double checking, getting another opinion from- when I called and said we are worse- horrid aggression after our 1st IVIG, he strongly suggested a 3 week course of oral Vancomycin- I was desperate, did it, and she got better (looking back, think it hit Lyme type bacteria)

but still thinking strep only, she started to backslide, strep was in her classroom (she did not catch it, and was on Azithromycin)

So, I panicked, did 1 more high dose IVIG, and kept her out of school.

Well, this 2nd one was GLORIOUS - happy, content, best play with sister I've ever seen...

Until the antibodies left her body completely after 4-6 weeks, and we were back to square 1.

 

I couldn't do anymore IVIG's- we were paying cash for them, and it seemed like a crapshoot- maybe I'll get the right antibodies, maybe I won't. I was also very uncomfortable to continue using pooled blood products from thousands of other people.

 

That's when I looked into Lyme, never thinking it would really be that -

 

Lauren K- isn't IVIG being studied for pandas/autoimmune placebo/ scientific study for the first time right now through the Yale study?

I didn't understand your comment about 'watch out for what you read here on this board, what 1 Dr. may say is not fully backed up by science'

IVIG is not, either- many various opinions about it as well.

 

This was our experience.

I believe if there are underlying infections still present, steroids and IVIG will not eliminate those, and perhaps cause them to flair more.

Having said that, there are some Lyme folks that are getting IVIG and it seems to help some- maybe they are immune deficient, we were not.

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We did one HD IVIG with a Pandas dx but prior to a lyme diagnosis. Like S&S, my son had a severe negative response - perhaps a herx. Whatever it was, the whole family decided it wasn't the right treatment for us. However, you will find many families who feel it's been helpful.

 

I think one thing S&S's daughter and my son have in common is that neither are very good at ridding their bodies of toxins. Our kids struggle not only with IVIG but also with certain aggressive abx treatments meant to "take no prisoners". So maybe it's not a question of whether IVIG is good or bad but rather how well does your body clean up the mess?

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We did one HD IVIG with a Pandas dx but prior to a lyme diagnosis. Like S&S, my son had a severe negative response - perhaps a herx. Whatever it was, the whole family decided it wasn't the right treatment for us. However, you will find many families who feel it's been helpful.

 

I think one thing S&S's daughter and my son have in common is that neither are very good at ridding their bodies of toxins. Our kids struggle not only with IVIG but also with certain aggressive abx treatments meant to "take no prisoners". So maybe it's not a question of whether IVIG is good or bad but rather how well does your body clean up the mess?

 

Have you ever tried Charcoal? I am considering trying it to decrease herx..?? I know it has to be timed carefully.

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yes, infact did Charcoal last couple of days after my son added Bactrim to azithro. The first day got a little scary and gastro symptoms started GERD, Constipation, bloating, gassy, pain. He was clearly going through herx because the agitation and intrusive thoughts were trying to start. So I treated the gastro symptoms aggressively and once I got his bowels moving good, I used charcoal 2 hours a way from anything. Worked great, he has been so calm and together the past 36 hours.

 

I only used 1 capsule a day. He's 7 and sensitive to most anything I give. So I only used 1 capsule but it seemed to make a dramatic difference. He is very calm for him.

 

 

We did one HD IVIG with a Pandas dx but prior to a lyme diagnosis. Like S&S, my son had a severe negative response - perhaps a herx. Whatever it was, the whole family decided it wasn't the right treatment for us. However, you will find many families who feel it's been helpful.

 

I think one thing S&S's daughter and my son have in common is that neither are very good at ridding their bodies of toxins. Our kids struggle not only with IVIG but also with certain aggressive abx treatments meant to "take no prisoners". So maybe it's not a question of whether IVIG is good or bad but rather how well does your body clean up the mess?

 

Have you ever tried Charcoal? I am considering trying it to decrease herx..?? I know it has to be timed carefully.

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hugs2day- can u elaborate how u aggresively treated the gastro symptoms. Thanks.

To treat the gastro symptoms and get his motility going we did the following:

Sach B 3billion with culturelle 10billion first thing in am.

High Dose Vit C 1000 mg twice daily.

Mag citrate 2 oz of the bottle liquid kind you buy at the pharmacies, this is the big guns. a lot of electrolyte water with soluable fiber (trufiber). Also avoided ibuprofen for two days he did okay.

 

Aloe Vera Juice/ acetyl l-carnitine mixed in smart water which has electrolytes. I did this to hydrate because the mag citrate pulls all the water to intestines. I continued giving enzmyes with each meal and pepcid one time daily and alka seltzer gold in the afternoon to address gerd. It was a lot of stuff in one day and repeated the next day. Encouraged exercise and trampoline. It took until the evening to get a bm. Then the clean out began to come next morning after that he had been backed up for 3 days. This protocol made him regular it did not even cause diarhea. He has always suffered chronic constipation which I know think is lyme or strep in his gut, but that is another conversation.

 

When his tummy looked flat again and he was happy and no more bloating and gas I went for the charcoal clean up. He is currently doing well and BM's are regular for him. I addressed the GERD with pepcid and alka seltzer gold, the gas with enzymes, the no motility with aloe vera/acetyl l carnitine,vit c and the big guns was the bottle mag citrate only used 2 oz. Normally I don't use that liquid I use natural calm but it wasn't doing the job for this. The probiotics and sach B I give to him normally but I increased the dosage to 2'xs cuz I thought he had bacteria or yeast overgrowth due to adding the 2nd antibiotic. It worked this time. I find that I keep having to change things with him. What works once or twice doesn't always the next go around.

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My son started IVIG approximately 10 months after starting treatment for Lyme/bartonella. Based on what I had read on this forum, it sounded like a good idea to wait until the Lyme/bart had been treated for a while so honestly, we drug our feet for several months regarding the IVIG. Not sure how much of a difference it made but to date - and my son just completed his 4th - all IVIG treatments have made a positive impact with little regression in symptoms. Generally we see more ticcing and hand/arm shaking for a few days; after one the dilated pupils came back for a couple of weeks but overall - progress after each one. Because of insurance, we have not been able to return every 8 weeks as the doctor would have liked but - and my son seems to be an exception here - he did not backslide even 16 weeks out from IVIG.

 

Lyme treatment (ABX plus supplements) started end of September 2010

After IVIG #1, June 2011 - greatly improved mood/behavior

IVIG#2, September 2011 - greatly improved performance at school (including math)

IVIG#3, November 2011 - slight improvements with physical symptoms

IVIG#4, March 2012 - another leap forward in mood, improvements with physical, too soon to tell on school

 

OCD continues to hang on but ever so slooowly improving as well.

 

My son was being treated for Pandas for the year prior to Lyme diagnosis and had PEX in November 2009. Neither the Pandas treatment (ABX) or the PEX had any substantial impact though I suspect it was slowing down (stopping) the progression.

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Our personal experience, before we knew about Lyme and co-infections being present, we had 2 high dose IVIG's.

The first one did nothing (we were in the same nightmare). It was a big herx. I had a PANDAS/DAN Dr. that was our primary and prescribed it, and then I had another PANDAS Dr. on the east coast with whom I was phone consulting, double checking, getting another opinion from- when I called and said we are worse- horrid aggression after our 1st IVIG, he strongly suggested a 3 week course of oral Vancomycin- I was desperate, did it, and she got better (looking back, think it hit Lyme type bacteria)

but still thinking strep only, she started to backslide, strep was in her classroom (she did not catch it, and was on Azithromycin)

So, I panicked, did 1 more high dose IVIG, and kept her out of school.

Well, this 2nd one was GLORIOUS - happy, content, best play with sister I've ever seen...

Until the antibodies left her body completely after 4-6 weeks, and we were back to square 1.

 

I couldn't do anymore IVIG's- we were paying cash for them, and it seemed like a crapshoot- maybe I'll get the right antibodies, maybe I won't. I was also very uncomfortable to continue using pooled blood products from thousands of other people.

 

That's when I looked into Lyme, never thinking it would really be that -

 

SS I meant that IVIG, PEX and steroids are known well proven treatments for autoimmune disease. PANDAS has been considered an autoimmune disease since the early 1980s when Swedo coined the term. I didn't mean any harm by my statement. I know my responses are short, it's just because I've been so busy with my son. (Aspergers/PANDAS)

 

Lauren K- isn't IVIG being studied for pandas/autoimmune placebo/ scientific study for the first time right now through the Yale study?

I didn't understand your comment about 'watch out for what you read here on this board, what 1 Dr. may say is not fully backed up by science'

IVIG is not, either- many various opinions about it as well.

 

This was our experience.

I believe if there are underlying infections still present, steroids and IVIG will not eliminate those, and perhaps cause them to flair more.

Having said that, there are some Lyme folks that are getting IVIG and it seems to help some- maybe they are immune deficient, we were not.

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