deneb

Deej,
Boy, your doctor sounds like a gem.....among many old rocks! I am going to Dr. Lerner after the first of the year (2004), but don't have all the finances together yet. It isn't cheap, but then, what good usually is??? You are asking about the HHV-6, strain A or B tests, and I don't know (Robert Kessler will) if Doc.Lerner does any of that. I know he mainly is concerned about viral attacks on the heart, so probably heart tests and viral load tests, etc. I'm sure Robert will be on to talk about that, as he's been through that routine.

I wanted to just mention that I really see how you could have gotten so much worse with all the stressors you mentioned. Wow...that might have put me in an institution talking to walls!! Way to hang in there....others might not have been able to. But I know it was extremely difficult on your disease. It is really an opportunistic little devil, this ME/CFS culprit. Stress of any kind is like giving it chocolate....although I do like my chocolate!! : ) But about the Doxy...My best friend here with CFS for almost 15 years (to my almost 14 years) has been on and off pill form doxy for the last two years. She finds that when she takes the dosage recommended by her doc...it makes her quite ill. But if she can divvy it up during the day along with mini-meals...and take "mini-vacations" from it every six weeks or so....she can bear it. She says she does feel better in the end and always starts taking it again of her own volition. I think it does do battle with our viruses and that's part of the side effects of taking it.

Dr. Suhaldonik at Temple University who first found the RNA/DNA problem in our R-nase L pathway (molecular weight that wasn't correct), advised my oncologist/hematologist (I don't have cancer ...yet, cross my fingers) that he should put me on IV doxy for 6 months to a year, with mini-vacations for liver and kidney respite. I have read that some patients that have gone through these rigors have gotten pretty good results and some swear they got "well" from it. BUT I tried to get it, and even though my doc talked on the phone to Suhaldonik and we both were ready to do it right then....insurance said "no" and that was that. I even did my own appeal, but to no avail. So, maybe if your doctor fights for you.....you can get it. The doctors here in Nevada are so afraid of the AMA and FDA, they won't fight for much of anything. At least no one I've seen, and I've seen a huge number of various docs.

So, it is considered for certain viruses and cancers (the IV doxy)...perhaps even as an AIDS treatment, but is very expensive, time consuming, and considered experimental for CFS/ME. Now, if you could prove you had a viral load (like the mycoplasma ?) that it is FDA approved for (I don't know precisely what it is considered protocol for), you might be able to get it. If you can do that, boy....that's one way to go that just might really be successful.

Anyway, I wish you the best of luck. I hope your doctor will fight for your treatment. We all need that...and need to press for that. We deserve to be treated for our disease!! Oh well, no rant today. I did some cleaning (about 4 hours worth) to get some dishes and part of the kitchen out of the health dept's "homes without hope" (just kidding...sort of), and of course, at the end of that "good day"....I just had a meltdown and two days later, am still mostly in bed. So much for doctors that say, "just push yourself as much as you can, then rest". BS. If you do that....you always pay. At least, I always do. But I am having family for Christmas...and it can't be far enough away. I was going to start Oct.1st, but was too ill. So, maybe I'll have the dishes and most of the laundry done by then....perhaps. If not, I'll be ashamed, shove things in wherever they'll fit, and pretend it was no problem....right???

Again, good luck and let us know what happens. Suzq in Vegas