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LD IVIG with Japanese Knotweed?


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Hi,

 

My DS (26) is currently doing low dose IVIG Sub Q....I wanted HD but doc (Dr. J) is doing it this way because thinks its immune system which is low. Won't do IVIG intravenous because says side effects are greater in the brain this way.

 

Also thinks if LD IVIG works then it'll fix other issues; confused, doesn't really speak, no memory and so on. Son has been mentally disabled for years. Diagnosed with lyme, babesia and possible bart several years ago and treated with several llmds including 3 years with Dr. H. Also was with PANDAS doctor for 2 years.

Son never really improved. Basically just sits all day, can't leave alone.

 

Anyway, doc says won't really know if this is helping or not for at least 3 or 4 months (3 or 4 treatments). I'm not giving anything else but Japanese Knotweed.

 

Have given him MANY supplements for years and nothing made a difference so not giving anymore.

 

We do still see LLMD but honestly I think she is stumped too. His ASO is very high (700's) but doc isn't too concerned. She doesn't believe in lyme.

 

OCD seems to be getting alittle worse, it isn't bad just little things.

 

Is it OK to give japanese knotweed with IViG considering both help the immune system? Just want to make sure I'm not overloading him so to speak. I did tell the doc I was giving him this and she said OK?

 

thanks for any insite

 

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Random thoughts: I haven't given japanese knotweed since we started IVIg, but I can't imagine it would be a problem. Anti-inflammatories are generally recommended for reducing side effects from IVIg anyway.

 

What I might wonder is more about the unknown - is there lyme (or some other germ) such that the knotweed is doing something but not enough to get rid of it. I might want to try a few days without the japanese knotweed just to see if anything happens, does he get a bit worse or a bit better or stay the same, etc.

 

I would be concerned about the ASO staying high and not coming down. It can take a long time (it has taken 2.5 yrs for my son's to come down from 800 to 300-ish). But it would bother me if I saw no movement in the number. Maybe the IVIg would help with this. It would make me more comfortable to be on some form of antibiotic with a high ASO.

 

Also I don't understand:

 

We do still see LLMD but honestly I think she is stumped too. His ASO is very high (700's) but doc isn't too concerned. She doesn't believe in lyme.

 

The LLMD doesn't believe in lyme (that wouldn't make sense), or your PANDAS doc doesn't believe in lyme? Have you seen an immunologist?

 

I don't think it's a big deal to try the LD IVIg. While there are anecdotal stories of LD making things worse in the presence of lyme, we didn't see that at all (though we did combo antibiotics for lyme prior to starting IVIg, we didn't see any improvement in OCD; no clue about the lyme really, as I wonder whether our son's bands on the WB reflect something else that's not lyme). I would think that if subQ didn't cause a problem, then the LD wouldn't either. But, if it doesn't help after a few months, I'd be asking again about HD. LD will supplement the immune system, whereas HD - the thinking goes - may shut down the production of bad antibodies.

 

just my two cents - good luck!

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