Oral antibiotics with disseminated disease?

[bubbalyme]

I was wondering if anyone has ever been treated or gotten their life back after being on only oral anti-biotics. I was wondering. I am on my six months of widespread lyme disease in my system. I am one of the lucky ones that has tested positive both ELISA and Western blot. Thankful for that.

But I am so tired and I am only new at this. Somedays I feel as if I am so dizzy, I am wondering if it is the ammonia. Other days my heart decides to do a jig all the while suffering a million other things in my body. I was seriously considering many strange thoughts this week.

But I wonder if anyone has ever been treated without IV with a six month history and been successful. I have lost all of my vitamin D in my body or am really low by the last blood test. Losing a tonne of other vitamins. Having trouble absorbing wondering if there are problems in my gut that are hurting treatment.

Dr. Pittman wants to treat the GI so better absorption will be acheived. I pray to God this will work.

I feel for everyone who has come into contact with this nightmare illness.

[Bill S]

Originally Posted by bubbalyme

I was wondering if anyone has ever been treated or gotten their life back after being on only oral anti-biotics. I was wondering. I am on my six months of widespread lyme disease in my system. I am one of the lucky ones that has tested positive both ELISA and Western blot. Thankful for that.

But I am so tired and I am only new at this. Somedays I feel as if I am so dizzy, I am wondering if it is the ammonia. Other days my heart decides to do a jig all the while suffering a million other things in my body. I was seriously considering many strange thoughts this week.

But I wonder if anyone has ever been treated without IV with a six month history and been successful. I have lost all of my vitamin D in my body or am really low by the last blood test. Losing a tonne of other vitamins. Having trouble absorbing wondering if there are problems in my gut that are hurting treatment.

Dr. Pittman wants to treat the GI so better absorption will be acheived. I pray to God this will work.

I feel for everyone who has come into contact with this nightmare illness.

YES, I've been only treated with orals, despite having disseminated disease for 2.5 years, with major symptoms and multiple relapses. My LLMD said he tries to reserve IVs for those with mostly neurological symptoms, which mine were "mild", despite significant brain fog and memory issues...

My doc put me on Vit-D3 supplements (initially 2000IU, raised to 4000IU recently), along with 6g fish oil, Tindamax, Cefzil, and Benicar. It's been working out WELL so far, albiet slower than I like. In treatment with this regimen since late December '06. I'm at about 98% of normal, with some persistent minor symptoms. My CD-57 is rising, though it's not yet where we want it to be (that'll take some months).

My doc says that the low Vit-D test results are because I have so much inflammation in my body; the Lyme spirochetes apparently go into cyst form and create inflammation around themselves as protection from the antibiotics. You have to keep the Vit-D levels up, and the Benicar regimen seems to help with both reducing the inflammation and helps keep the die-off reactions down.

[bubbalyme]

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.

Michelle

[bubbalyme]

Bill,

I had a question. I was wondering where your doctor was located. I was thinking about leaving NC and looking elsewhere so we would maybe have some better luck. Our first doctor is under restriction so we know we have to change to be able to continue treatment unfortunately.

[Bill S]

Originally Posted by bubbalyme

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.

Michelle

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.