LymeNet Flash: Has anyone tried plasma pherisis?

This is topic Has anyone tried plasma pherisis? in forum Medical Questions at LymeNet Flash.

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Posted by Butterfly (Member # 4148) on :

My doctor wants me to undergo plasma pherisis and plasma exchange and IV immunoglobulin treatments. Apparently the Bartonella and Lyme has triggered an autoimmune response, causing inflammatory nerve damage and vasculitis. Has anyone had any experience with any of these treatments?

I am petrified after hearing all the risks and possible side effects and am now too scared to go ahead with it. Any thoughts or experiences you could share with me would be very helpful. Thank you for your feedback.

Posted by zipzip (Member # 6226) on :

if you can get covered for the iv gamma globulin treatments then take them. that stuff is clear gold i tell ya!

plasmapheresis and iv gamma will give your immune system the support it needs to properly fight the infection.

who is your doc? btw???

i am interested in hearing more

Posted by ibrakeforticks (Member # 6785) on :

How were the inflammatory nerve damage and vasculitis discovered? (What are the symptoms, and were tests done that showed these problems?) Thanks!

Posted by hwlatin (Member # 4123) on :

I had four months of plasma pheresis. 30 pints of plasma a day. It was for TTP, which doctors now believe was an autoimmune response caused by the Lyme.

At the time TTP was life threatening for me and the treatement was necessary to keep me alive. It was not until several years later that Lyme was diagnosed.

What I can tell you is after the last pheresis treatment, I felt worse than the day that I almost died. I can not speak for IVIG, but that is a comon process for people with ITP a sister disease, both involve low platelets.

I would seek several opinions before I went throught these processes. There is always a risk with blood products,and who knows whats out there that is in the blood that has not been identified. In my case they were using pooled plasma, so it was like I was getting 300 pints of blood a day.

In all I probably had the equivilent of 10,000 pints of blood, who knows what I might have gotten.

Posted by twoangie (Member # 1636) on :

Butterfly,

Are you open to trying something that is noninvasive and comes without a prescription? If so, please try Omega 3 fish oil capsules plus Coenzyme Q10. This is not a cure and you will have to stay on them but if you are experiencing numbness and tingling at night when you go to bed, then you may see some good results.

I take six Omega 3 capsules a day. I take 3 in the morning and 3 in the evening. With each dose I am now taking 150mg of CoQ10 to total 300mgs a day. I buy my CoQ10 at Costco so it runs about $25 per month otherwise, at this doseage, I would not be able to afford it from other suppliers. I think it is similarly priced at Sams Club.

It generally takes a little while for this to take effect but if you give it 2-4 weeks you may notice a significant reduction in some of your symptoms. You have to stay on these as a control and can not skip days or the symptoms will return rather quickly and may take several days for the supplements to kick back in. It's worth a try and healthy to boot.

Angie