From another post by me, with some advice,
I would really like to try the Raltegravir...can someone please email either the list of "xrmv literate" doctors or whoever your seeing who would be willing to prescribe antiretrovirals for lyme/cfs.
Charlesbeutt@gmail.com. I can keep the list to myself if you'd prefer.
I have had lyme/cfs for about 5 years (Im 30) but my symptoms are more advanced because I was put on steriodal anti-inflammatories (immune suppressants). Truly a tragedy, I dont think I really even have two years to wait for a treatment. I have tried hundreds of treatments including a combo of viracept, tenovir, and AZT. I didnt try raltegravir because I couldnt purchase it. Azt made me worse, anyone who reads the side profile knows that it makes you more susceptible to bacteria infections (nasty even if they are secondary to xrmv). You might want to go off the AZT and just do the Raltegravir and Tenovir for awhile. I have a small list of things that worked for me but the three most noticeable were...
1. I used to having insane sweats, sometimes at night or during the days. Felt like I was melting and my mind along with it. Two weeks of Famvir and my sweats are 95% better for the last two years. Sadly did not effect my other symptoms. Got the idea from a lymenet poster.
2. Edta, either suppository or intravenously helps break up biofilm (orally only 5 percent is absorbed). Biofilms develop whenever "bad" bacteria, fungus or group of parasites hang out too long inside the body-like in immune suppressed individuals. Viruses can exist inside bacterial biofilms also. I took tindimax (less neuro toxic than flagyl) after several suppositories of EDTA (over about 6 hrs) and noticed a 15-20% improvement in mental clarity+overall well being for the last 3 weeks. So I'm about 30% of my former self. My thoughts for my experiment were that the EDTA eats away the metallic or calcium coating on the biofilm then the tindimax blows up the cyst form of lyme which is also known to exist inside biofilm communities. Take a day off every time you use EDTA and do NOT take zinc, iron, calcium when you use EDTA, is what my doctor suggests. Repeated use of edta (every other day) may help stop what I think is biofilm related autoimmune responses I have gotten from certain vitamins/drugs.
3. Sugar, diet sodas, high stress, poor sleep, iron from high meat intake, especially red meat or from supplements, copper, and vitamin D can make your symptoms 10x worse. Vitamin D supplements make my symptoms 4x bad by itself and practically locks my jaw for a week or two afterward, for whatever reason. Melatonin (2-3mg) can really help you get some decent sleep (skip a day in between uses), help depression, minor energy increase, and gives a general immune boost. Dont take too much at once, I get an autoimmune type reaction.
So
1. You get sick (I was bit by a tick) probably by a combo of lyme disease, herpes viruses, and xrmv
2 Your immune system is suppressed rapidly
3 Biofilm develops, different compositions in everyone- Lyme or otherwise, about two to three months in
4 Your finally treated with antibiotics (one or two months after the initial infection)
5 You feel better on a certain antibiotic combo but the biofilm regrows antibiotic resistant (since the shell is not disrupted) and the xrmv is not addressed
6 Slow growing xrmv continues to spread, which with the biofilm- keeps you immune suppressed. Even if the lyme/herpes infections are knocked down.
7 Continued antibiotics after a certain point just harm good bacteria in your gut but not the biofilm bacteria
8 You go off antibiotics and lead a low functioning life
9 You come to this forum and others looking for help
Edit: Selenium, NAC, and glutathione are supposed to be good natural antivirals, and have been used for support against HIV. I get crazy reactions from these vitamins...generally feeling slightly better then slightly worse but not really bad worse- immune reconstitution syndrome or hexheimer could also explain these reactions.
