Starting Raltegravir

Charles555nc

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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). I'd also love to see how a protease inhibitor would work in this disease, like Darunavir or Atazanavir...but thats probably for much later. 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 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 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) 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 :D


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.
 

shannah

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Don't want to hijack this thread - just want to welcome you to the forum Tia.

I have two children - both born ill - and no matter whether you're born ill or 'acquire' it along the way, it's one heck of journey isn't it???

You are not alone!

Don't think I've heard before that the WPI is working on a cancer medication that may be available in the next couple of years so thanks for that tidbit. If there is no info on it already here, perhaps you could post the details of what you've heard in a new thread.

Blessings

Hey you guys!

My name is Tia here, and I've been sick since birth. I am now 32 years old and on disability leave. Have fought like hell to be able to study and work because there are SO many things I'd like to do in life but can't because of the ME. I'd like to travel and go dancing and start swimming and such but being tired all the time stops me. I feel so alone in this condition, I don't know anyone with it in this country, so this forum with you guys, sitting here and reading about your troubles with ME, that we are all in the same boat toghether, is a huge comfort to me and I'm so grateful for it. Just the thought of that there are more like me out there is a big comfort.

What I'd like to know is if there are anymore like me, who were born with this condition? I've been extremely tired since birth, (the doctors thought I was stillborn at first since they slapped me on the behind but couldn't make me scream, I just fell asleep although they held me upside down) and no doctor have been able to figure out what was wrong with me until a friend of mine showed me Chronic Fatigue Syndrom. At first I thought it was to be just another thing that didn't fit in the decription of how I felt, but I read it anyway and was stunned as I read along, everything matched! So I told my doctor and got the diagnosis. Then I heard about the XMRV and a possible cure.. That the WPI is working on translating a cancermedication for us that will be out on the market in a couple of years.. That sounds GREAT! I can only imagine what it feels like to be healthy and rid of this obsticle.

Since I was born with ME I don't know what it's like to be healthy and I wonder what it must be like for all of you who have been healthy and then suddenly got sick. It must be hell! You're all in my prayers.

Anyway that was my presentation, just wanted to introduce myself and I hope all of us can see the light in the end of the tunnel SOON!

And to Jimbob: There is a cure coming that they're working on, so in moment of despair remember that it's on the way. Might help alittle.
 

Daffodil

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i wonder if the cancer drug being referred to is Velcade. they talked about it a few times in the media last year, with respect to CFS.
 
C

Cloud

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Welcome Tia. Being struck ill after many years healthy, or being born sick, we are all in this together. Sorry you have to be here, but glad that you are.
 

redo

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Great post Charles! Welcome to the forums. I think you're spot on with your thoughts about biofilm (and lyme), xmrv and the effect of the steroids. Hope RAL works out for you if you give it a go.
 

Charles555nc

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So the process to get Raltegravir is to get an xrmv test from http://www.vipdx.com/ then take that test to local hiv doctor and hope he treats? I dont have alot of money so Im trying to find the cheapest/easiest way possible to try this. If there is a doctor who doesnt require the test would help save money...any tips? charlesbeutt@gmail.com
 

Daffodil

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charles.....remember u can get RAL free from Merck if you are eligible....u just need a cooperative doctor.

good luck
 
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In a conversation with Judy Mikovits she pointed out for me:". One never should take raltegravir alone as there would be a build up of unintegrated virus in the cells and this can cause a cytokine storm exacerbating the symptoms!!."
That is helpful information. Thanks.
 

redo

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Been away for a few days, so I need to update a little. Had 5 weeks feeling considerably better on Ral and then the sh_t hit the fan! I felt horrible for 8 days and finally had to stop it. Think I will start it again any day now, because I really miss those 5 weeks. The mono therapy remarks and this IRIS thing still bother me though, but after being sick this long, I feel I need to give it another shot.
How's it going with you now jimbob? It's a while since you've stopped it. Are you now worse/better/the same as before you begun?
 

jimbob

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I gave it one more shot redo, for 8 days, and it did'nt do much one way or the other. been off nearly 3 months now. Did lose 22 lbs rather quickly somewhere along the line, which scared me bigtime. That is why I kind of disappeared from the forums and chat rms for a while, which I apologize for. Had a lot of scary tests done and found out I all of a sudden have arthritis and diverticulitis. Weight starting to come back some. Don't know if any of this had to do with taking Ral alone or not. Still don't know if I'm completly out of the woods, but I certainly feel better than I did when I thought I might not be around much longer! Just praying for the day the experimenting can stop and we have a safe and effective treatment. Thanks for checking on me, and you pass this along for me if you like, Jim
 

Tia

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Damn, was kind of hoping for raltegravir to work, but the hope is long from out: Keep in mind they 're working on a treatment for us, tailormade. :) It's what keeps me up, anyway.
And Jimbob: Thank GOD you're better at least. 22 pounds lost doesn't sound good, so if you can, try to eat alot now so you get the weight back. Maybe it was too much of a strain on the organs or something?