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[QUOTE=bubbalyme;2965139]Thanks for writing back Bill. I have been so worried about this. Because I don't want if I can help it to go into the world of IV antibiotics. All of the nurses and expense and I am just plain frightened.

I have had twitching and some neurological involvement. Your doc sounds very knowledgeable. I am worried about my situation my doctor couldn't tell me why my vitamin D was so low. What is CD 57, what does that mean? What is Benicar? I seem to have so much to learn.

Good luck to you. I hope you will be feeling 100% soon.


Trust me, the oral antibiotics can get quite pricey too (runs me about $250/month), but if you can be treated effectively without resorting to $4000+/month IV antibiotics, great. :)

It's VERY important indeed that you get treated with 2 different antibiotics; one to kill the spirochete form, and one to kill the cyst form. If you didn't know, the spirochete can react to changes in it's environment (like antibiotics) by burrowing into tissue and changing into a cyst which then waits until things become more favorable and come right back out. You HAVE to kill the cysts or the Lymes will come back again and again, despite multiple courses of antibiotics. Many docs don't realize this. Flagyl or Tindazole are very useful here - the Tindazole is a second generation Flagyl with fewer side effects. I use it myself.

CD-57 is a test that can be run by lab corp that checks for levels of a particular white blood cell type. As far as is known, ONLY Lyme affects that number, so if it's low, it's indicative of active Lymes. The Lyme disease spirochete has the ability not only attack that type of white blood cell, but it can suppress the body's production of it. 60-360 on the test is considered "normal" by most lab's criteria, but many Lyme docs want it to be closer to 200. Under 60 is a real concern.

Benicar is a blood pressure medication that is being used by some docs. It is only a so-so blood pressure reducer, but it has a useful side effect; that of reducing the "cytokine response" and reduces inflammation. I believe it was the Marshall Protocol guys who came up with using it for inflammatory disease, though it's not a commnly accepted use of the drug. It seems to also have some activity versus the Lyme spirochete directly, but I haven't seen any actual studies of this (this was merely an observation of my doc because I had dieoff reactions - in my case, many red spots over my body - BEFORE I started antibiotics but was on the Benicar).

One school of thought is the Marshall Protocol guys who think Vitamin-D is bad and one should greatly reduce it to help with Lymes. My doc is of the opinion that one should bring up Vit-D levels to a normal range. Folk with inflammatory diseases like Lymes, Lupus, ALS, etc seem to have lower than normal Vit-D levels, and my doc has noticed great improvement raising Vit-D. The Marshall guys say the Vit-D acts as an immune suppressant, suppressing symptoms and the Lymes simply gets worse. My experience is that the Vit-D has helped me, and my CD-57 numbers are steadily increasing, which is what we want.

There are many wrinkles and new things to be learned in the treatment of this awful disease; it's very crafty and adaptable.

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