Antiretroviral Trial

[undcvr]

I managed to get my hands on Ribavirin and it comes today. I am dropping everything else and taking that with the Valcyte only. You are right about Raltegravir, if you have to give up anything, that would be the one, it is one of the weaker AVs.

Anedoctal evidence suggests that LDN can work against muscle dystrophy and facial wasting, don't quote me, its just one of those observations out there that you can add, IMO, the dose is so low, it will not interact at all with your other meds.

I have recently been researching the concept of 'stealth virus', its a concept that doctors outside the mainstream believe in. Any thoughts on this ?

Daff I wonder if you are not infected with the Parvovirus or the the SV-40 virus instead, they are more closely related to encephalopathic illnesses and HHV6 just an opportunistic infection.

 

[Charles555nc]

I retried taking some ratlegravir and valcyte and I just couldnt tolerate them again. I wonder why I cant: I get massive nerve pain, rapid heart beat, terrible mood etc etc.

Is that something you went through? How long does it last and should I try and just work through it? Idk it scares me because Idk if I am gaining anything and I might be getting worse.

 

[Daffodil]

charles...absolutely i had it. i had it all. when it got really really bad, i had to cut back on one of the meds cuz i was sure i was about to have a heart attack.

this is only my very humble opinion, but i believe what you experienced was a very good sign. yes, its a lot of suffering to go through, but i went through it because i could not imagine a greater hell than not trying to get out of the hole i was in.

it can last a few weeks or a few months. i would guess the worst of it should be over in 6 weeks.

 

[Daffodil]

und..thanks! i have been tested for parvo and i showed no prior exposure. i am not sure what SV-40 is. i will look that up.

now i am thinking that maybe i can take ribavrin too..or one of the others on the chart from that study where they tested all the drugs against xmrv. i just hate the idea of azt again. UGHH. i mean..it worked, but i dont want to look awful on top of everything else i have lost!

please do tell us how it goes with the ribavarin!

 

[heapsreal]

dr john martin was big into stealth viruses and sv-40,
http://ccid.org/svintro.htm

 

[Charles555nc]

Was it worth it Daffodil?

What improvements did you see?

 

[Daffodil]

charles...it was absolutely, without question, worth it. i would have committed suicide by now- no question - if i had not tried them.

i was in utter hell. the agony would NEVER let up. it was as if my entire body was being consumed by an infection. i was having trouble getting out of bed even to pee. i had started calling nursing homes. i was looking into purchasing a bedpan. but mostly, i was preparing my family for my suicide.

it was as if someone was squeezing my head in 24/7. i cannot even explain the feeling because there are no words.

now, my brain fog is still bad. however, i have enough energy to clean, to cook, to buy groceries. i cannot do more than maybe 30% of what the normal person does, but i feel that once i am able to treat the brain infection, i might improve further.

if i overdo it, which i do sometimes, i just need to sleep a lot the next day. but only one day...i am not sick the entire week as before.

my body feels stronger. i get urges to do things. its just different. its a big change.

my improvement isnt as spectacular because i am 40, i was almost dead when i began treatment and i had been sick about 18.5 years. things are much better for those who are younger and started sooner i think. still, if i find a way to fix my brain and CNS, i will be very interested to see what happens to me then!

 

[Charles555nc]

Yeah I retried them because Im getting these "brain shock" feeling deep in my head occassionally, as well as a disturbing "neck rot" feeling. Also got a werid, "Wake up in the morning and someone is changing the channels in my head" thing going-where I cant organize my thoughts. Scary stuff.

Right now all I can tolerate is Raltegravir once a week and valcyte maybe 3 times a week.

Edit: I took my chelation treatments shortly before my valcyte yesterday and I dont have the "having a heart attack discomfort" in my chest or rapid heart beat. Alpha lipoic acid and edta, perhaps help dilate the blood vessels enough to avoid that. Will try that again for the valcyte AND raltegravir day this week.

 

[Daffodil]

hi charles. you're taking raltegravir only once a week worries me because of the possibility of resistance emerging with the retrovirus. have you tried tenofovir? (you may have told me this but i forget a lot)

for almost the entire length of my illness, i have avoided doing a fasting lipid bloodtest, because if i didnt eat every 4 hours, i would become really sick and all the CFS symptoms would flare.

yesterday, i did a 13.5 hour fast and went to get the bloodtest. i felt fine, like a normal person. i even went grocery shopping afterwards, before eating.

 

[Charles555nc]

Daffodil, Im gonna need you to be specific. Ive reread your last couple posts and Im confused.

FIRST
I think you described how you felt BEFORE you took some medications. I know one of them was Raltegravir and I think the other was Tenovir. DID THIS INCLUDE VALCYTE? Im not trying to make myself worse and if Valcyte didnt work for crap I dont want to take it.

SECOND
What were you symptoms AFTER taking these meds?
Were they worse than you were before you started the meds?
If you could tell, which meds gave you which symptoms.

THIRD
Which drug or drugs do you think helped you the most over the course of your illness, going from near wanting to commit suicide to 30% of normal.

That info would really help me.

Edit: Had already added in Tenovir and not taking Valcyte until i hear from you.

 

[Daffodil]

hi charles. no, valcyte doesnt enter into the picture here. i took it for for 3 yrs before, under dr. lerner, but it did not help me much. but it has helped many.

the meds i am talking about are: Tenofovir, Raltegravir, and AZT.

since i started AZT first, improved just a little on that, and then added the other 2 a couple of months later, its hard to say which would have helped more. i am inclined to think AZT helped the most. however, I stopped AZT after 1.5 years and i dont think i backtracked much. sometimes i think i may have backtrcked a little in my brain fog, but i am not sure about this.

when i added tenofovir in, i immediately felt a little boost. dr. deckoff-jones and one other person felt this too.

my symptoms immediately after the meds...well you go through phases where you think you are a little better, phases where the inflammation will flare and you are worse, etc. that will stop a few months into the regimen, depending, i guess, on how sick you are and how long you have been sick.

you must join the yahoo group for people on ARV's. i will see how to get you invited to it. that way, you can get a lot more input from people. i'm very foggy and cannot remember a lot of things accurately. please send me your email address in a private message.

sue
xoxo

 

[Daffodil]

charles..i forgot to mention. the rapid heart rate on the meds was treated with Atenolol. it got pretty high, sometimes over 100 at rest. i still take atenolol.

 

[Charles555nc]

My biggest concern right now, is that Im waking up 5-6 times in my sleep and moving around abit and going back to sleep. 5 or 6 times is alot, over and over.

I think its a brain issue... and it worries me.

 

[undcvr]

Charles555nc this maybe just my opinion but I think your protocol and your approach is wrong. You can't start and stop AVs and ARVs, this may backfire on you if happen to have a virus that becomes resistant to the AVs, this is especially true for Isentress.

Also didn't you once post that your ANA test came back positive, if that is true then you really don't have ME and instead have Lupus, which may explain your more unusual symptoms. Did you follow up on this ?

I also remember you mentioning the symptom of hypercoagulation. Did you have this treated ? Just treating this symptom alone can bring alot of relief.

 

[Charles555nc]

Treatment of lupus...high dose steriods and some antimalarial drugs Ive already tried...

Steriods...might as well put a bullet in my head.

I did post post I had added in tenovir, sorry you missed that. So tenovir and raltegravir...and Im trying to push past this intolerable period while on the drugs. Taking them once every 3 days instead of 4 is kinda progress.

I just noticed my blood clotted extremely easily when I was stuck with a needle, sometimes inside the tube itself I have no labs tests confirming hypercoagulation. Most of my lab tests are normal.

Edit: Looking into Methotrexate and Belimumab...(non steriod options for lupus)

 

[undcvr]

Actually you should look into the Betaferon ( Interferon ) treatments for Lupus. Most docs won't prescribe that for ME but they will for Lupus. The relief rate is quite high as long as you are on it.

I checked with my doc before they don't perform tests on blood clotting times but to be visually be able to see it is definately not a good sign at all. Many viruses produce fibrin to clot the blood to evade the immune system. You might want to go on a blood thinner, even Asprin will work.

 

[aquariusgirl]

charles
re hypercoagulation testing, the ISAC panel by Esoterix is supposed to be the best...most sensitive..
Yr doc needs to have/open an account with them.
Hypercoag is notoriously difficult to diagnose. Google Hughes syndrome. Professor Hughes in UK>

 

[Daffodil]

charles..i am really worried about your taking the HIV meds every 3 days..i dont think you can do that with these meds...i could be wrong...but ..maybe you can ask dr. mikovits or someone?

 

[mojoey]

Hey Charles,

It seems like you might be a good candidate for Rituximab since patients with RA have done really well on that, and some patients with ME/CFS had their PEM resolve within 24 hours on the drug. All in all very intriguing but not all of us have the profile that suits the drug best. I know Kogelnik in Mountain View is doing a clinical trial with this.

 

[Daffodil]

hi joey. i know you saw dr. peterson..i am wondering ..did he ever suggest vistide for you?

thanks
sue