Antiretroviral Trial

5150

Senior Member
Messages
360
hi sue,

keep in mind the WPI. we don't know what they are capable of yet. can't remember if you have any insight into it.
 

Daffodil

Senior Member
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5,894
hi 5150. yes you are right....the WPI is working on this 'round the clock.

a doctor suggested that my NK cells are low cuz of my other infection.

i have been trying every which way i can think of to cut costs of this treatment but coming up empty...its still about $1550 per infusion with everything included.

maybe the infusion company can sell me the drug at wholesale?...someone told me that an infusion company did that for them for IVIG. i will ask.

sue
xoxo
 

Daffodil

Senior Member
Messages
5,894
hi charlesm. the only thing i ever had was IgG of HHV6 at 1:640. it never went above that. i was always negative for CMV. but i have been tested for everything else.

i have contacted every single infusion company now, and almost all of them have said no. one is considering it but i have to wait until my doc sends all the stuff to them. its not looking good.

i dont know how i can move to the states. i cannot afford it and my mom is ill. i hope that one infusion company says yes :-/ i should start praying!

xoxo
 

Daffodil

Senior Member
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5,894
hi und. no one else thinks its high....many have much, much higher. i wonder what exactly these anti-herpes drugs are hitting. maybe its not hhv 6 or cmv or ebv at all!

i've had it. if this one company doesnt agree to give me the drug, maybe i will just go to the medical library, read a bunch of books, learn how to give infusions and give it to myself. how hard can it be? you dilute the drug in some solution. i can buy all the infusion equipment and learn how to use it. i can buy the drug and the saline. i can buy those suction tube thingies and tubes and needles. i will wear gloves and goggles and a mask. its probably just some simple math. even in my brain fogged state, i could do it.

strangely, you can just buy the drug at the pharmacy with a rx.

i just wont tell my doc how i got it and get my kidney testing done through him. he will just assume i got it in NY state like i said i would.

is that really stupid? i mean..it doesnt sound so stupid from where i sit.

of course, if he finds out, he will probably take away my HIV meds and everything. then i'll be totally screwed.

and my NY doc will have to write the rx, which could present a problem since he won't know how i will have it infused.

damn. i wish there was a site where you could hire nurses illegally LOL

one thing's for sure..i am not letting something like this stop me now. i am one (albeit major) step away from recovery. the HIV meds have done 1/2 the job.

how DARE my doc tell me i should just be happy with the improvement i have! how can he expect me to let an obvious infection keep spreading!!? isnt 20 years enough?? why would he do half a job??!!!
 

Daffodil

Senior Member
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5,894
**********SUCCESS************* a company has agreed to infuse the vistide in buffalo. it is kind of tentative but it seems like it will be a go. they seemed very interested in xmrv, nice surprise. it will be very expensive but much better than doing it in Michigan at Beaumont Hospital, thats for sure.

sue
oxxo
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hurray Daffodil!

Wow, what determination. When do you think this will happen (and appreciate that it is tentative)
 

Charles555nc

Senior Member
Messages
573
I called my doc to see if I can set up an annual appointment to get my hhv6 levels checked and cmv. But they are on vacation...how much do you expect to pay in the clinic in buffalo?

I ve learned how to do infusions by just watching tutorials. problem is my veins are getting worse and worse so they collaspe easily. So glad u dont have to do it yourself.

I hope I can follow your progress within a month. I got nothing else to do :( . I really hope this is the key to restoring function.
 

Daffodil

Senior Member
Messages
5,894
thanks guys! i am trying very very hard to not get my hopes up again - so much can go wrong - but i find myself jumping up and down anyway.

charles...i talked to a pharmacist who has prescribed the drug before. she said there is no way to do the infusions myself..that even a doctor would have a lot of trouble.

also you have to dilute the drug under one of those hoods they have at a lab that sucks air etc

i have wheeled and dealed all i can, but it looks like it is going to be $1545 per dose, taking into account travel, the drug (almost $900), lodging, infusion nurse for 5 hrs, infusion equipment. i found a way to get there for $5..and the bus leaves from across my street (going to the niagara casino)! i'm certainly not used to that kind of luck!

then i walk about 30 min across the border to the bed and breakfast, where they will let me do my infusion. the next morning, its back to toronto for my kindey testing.

this is sort of all or nothing. if it doesnt work, there will be literally nothing else with which to pursue any new treatment. someone told me that you know within 3 months if it will work.

i think i can start around mid-august. i'm getting kind of scared; i sure do hope my kindeys dont fail...

thanks for all your support:)

love
sue
xoxo
 

heapsreal

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daff,

Is it an ongoing treatment to maintain improvements, that is if u stop do u get sick again like most antivirals or does it help clear the infection if on it long enough. It seems expensive to sustain that sort of cost for too long. Hopefully you get better and maybe be able to work be able to pay for it that way if you need it for ongoing improvement.

fingers crossed for ya.

cheers!!!
 

Daffodil

Senior Member
Messages
5,894
hi heap. well, my hope is that the reason the supposed herpes virus in my head is active, is because i am weakened by the retrovirus. so..since i am on the HIV meds too, perhaps my immune system will be able to put the herpes to rest with the cidofovir, as it does with HIV patients. i know the HIV meds must have made me stronger, since i am quite a bit better than i was before i started.

i think that most people who have taken just cidofovir have maintained some improvements.....but they did not maintain full recovery.
 

Charles555nc

Senior Member
Messages
573
Interesting stuff, I wanna try it NOW hehe.

You know visitide doesnt have a strong penetration into the CNS. BUT, immunocompromised people have a weakened Blood-Brain barrier so it actually does help chronic infections in the CNS.
 

heapsreal

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Hopefully knocking the viral load down with cidofovir can be maintained with other safer av's like famvir or valtrex when you have finished with the infusions. How many infusions a week does it take and for how long?

Yeah i want to try it too.

cheers!!!
 

Daffodil

Senior Member
Messages
5,894
hi:). i took valcyte for over 3 years ... if valcyte didnt work, i just dont know if cidofovir will. i know peterson prefers cidofovir....so i guess i will see.

the thing that is really bothering me is, i have spoken to a lot of patients and have never run across anyone who has told me that cidofovir has worked for them when valcyte failed. if there were a few cases like that, i would feel more hopeful. i wish i could talk to more montoya patients.

charles..i was worried about CNS penetration too, but so many cases of brain infections have been resolved with cidofovir, that it must get up there enough, right? i do have a hell of a smouldering infection, though.

heap..i am hoping that i wont have to take any anti herpes drugs after cidofovir...maybe my immune system will be able to keep things in check by then, like it does with healthy people...if this works, that is.

its 1 infusion a week for the first 2 weeks, and then 1 every other week after that. for people who have been sick a very long time like me, i think this goes on for 1+ years. thats what peterson does. but i dont think i will be able to afford it that long...maybe 1 year at the very most.

i wish i could take foscarnet...arent strains that are resistant to valcyte supposed to be resistant to cidofovir too? i have heard of montoya going right to foscarnet if valcyte fails...so maybe cidofovir is a waste of time???

but no one will give foscarnet aside from montoya i am sure. and he has a 4-5 yr waiting list
 

Charles555nc

Senior Member
Messages
573
Have you tried calling Montoya's office and asking if he recemmends another Doctor who might be willing to prescribe Foscarnet? 4-5 year wait is ridiculous :(

http://www.youtube.com/watch?v=Riybtt6SChU
Stanford's Dr. Jose Montoya on Chronic Fatigue Syndrome
About 54 mins in he mentions his waiting list is "only" 2-3 years. But he does mentition another doctor that treats some cfs patients like he himself does at El Camino Hospital, Dr. (Andy) Kolgelnik, I had to rewind it several times because of his thick accent.

You might want to explore this. Its cool because foscarnet is listed with other antivrials in alot of his slides, when he talks about patients recovering.
 

Daffodil

Senior Member
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5,894
hi charles. thanks:)

i know about andreas kogelnik but i heard he is not giving ARV's..this was a while ago now so maybe it has changed, ..i am always worried that doctors who are researching CFS (other than the ones at WPI) will make me stop taking them. also, foscarnet is more toxic than cidofovir, i think. i am pretty sure it can only be given in a hospital setting. furthermore, i cannot move to california...so it might be impossible for me. but its always in the back of my mind.

maybe cmx001 wil be out by 2014 and we can just take that if ARV`s alone dont work...if we are still alive!

kristen loomis (hhv6 foundation)`s daughter took foscarnet. and this girl in a blog i found took it, too. she seems to be an amazing writer:

http://bealightcfsawareness.blogspot.com/p/living-with-cfs.html
 

Daffodil

Senior Member
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5,894
there is a risk of fanconi syndrome (serious kidney disorder) when you take vistide with tenofovir. i will ask my doc if i should stop tenofovir. i am wondering if raltegravir alone would be OK for a year, or if i have to add AZT back in. no one can really tell me the answer unfortunately, but i will try to get some input from researchers.
 

Daffodil

Senior Member
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5,894
i have decided to take AZT 250 mg twice a day while I am on Vistide, and stop the Tenofovir. I will have to deal with facial wasting...what can i do? I am too scared to take only Raltegravir..I really think taking at least 2 drugs is important..i am hoping the Vistide will not only work, but that I won't need it for too long. a lot to hope for, i know!

-S
 
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