Antiretroviral Trial

[heapsreal]

Valcyte fails miserablely vs cmv in liver transplant patients:
http://www.ncbi.nlm.nih.gov/pubmed/16213344

Also, Ive read Valcyte is more virus-static than virus killer.

Exciting news:
I just read an article explaining that Raltigravir works on a dna protein used by retroviruses and dna viruses like herpes viruses. But like you know, it doesnt penetrate the cns...

Question for Daffodil:

Have you looked into foscarnet as an alternative to vistide for CMV infection? Perhaps it is easier/cheaper to obtain? Perhaps not.

Thanks for giving me a new lead to track down Daffodil, since it looks like GcMAF wont be the cure I was hoping for. I think having a positive ANA, just means I am "not typical" cfs.

I thought most know that all/most antivirals are virus static as in only stops viral replication, i havent heard of any antivirals that actually kill viruses, especially herpes type viruses. Maybe using immune modulators with av's could kill the viruses, maybe ampligen or interferron which is used by dr chia. My idea of using av's is to lower the viral load to a level so that the immune system can keep it depressed. Maybe av's are something we will have to stay on forever to maintain our level of function. Lets hope they start developing new drugs for these viruses incase viral resistance occurrs with current av's.

cheers!!!

 

[heapsreal]

I have seen studies showing acyclovir, valtrex and famvir have had some success in prophylaxis of cmv prevention in organ transplant. I dont have any links but a quick google can find them. None were perfect but they did have some success so maybe its a case of trying to find the right av or maybe combination of avs like undcrv is trying, the old shot gun approach.

Just though of something that would be very different in the valcyte study just mentioned for organ transplants and cfs/me patients. The organ transplant may get poorer results with valcyte as they would be on anti rejection drugs which lower their immunity and allow infections to run wild, this is a very different situation to cfs/me even though we have poor immune function, but i dont think that can compare when on anti-rejection drugs, just a thought.

cheers!!!

 

[heapsreal]

Just counteracting the negative valcyte study which shows low dose of 450mg a day is just as effective as 900mg .

http://cid.oxfordjournals.org/content/52/3/322.extract

cheers!!!

 

[undcvr]

The study that Charles mentioned is a liver transplant study. It mentioned on the Valcyte insert as well as the website that Valcyte is to be used for organ transplant except liver. They specifically mentioned that Valcyte is not recommended for liver transplants, I am reading it on the inset now.

http://www.medscape.com/viewarticle/463555

 

[Daffodil]

hi all. i am very sick but still have more energy from the antiretrovirals. neck pain is very bad and brain fog severe. i wish i could check HHV6 titres often.

have been spending hours and hours at ER's due to my mom's back issues....thats been making me much worse. my mom may have surgery at some point, which puts a wrench in my cidofovir plans...but somehow, i must find a way.

sue

 

[Charles555nc]

I posted in the GcMAF thread:

"I think I posted here about feeling about 50% better on GcMAF over the first three weeks then regressing back to maybe 25% improvement.

*New Discovery*
I always liked retroviral explanation of chronic fatigue syndrome, so Ive always tried to add in things that are good vs aids a relative of XMRV. I tried NAC, selenium, glutamine, and lysine. Havent been able to tolerate them AT ALL.

Since I felt so much better on GcMAF. I started going back and retrying a couple things. Still get ms like symptoms with selenium, unless its 1/4th of a regular dose. But the NAC has done something I never expected. When I was doing my next last dose of GcMAF via injection...I actually started bleeding. For those that dont know, Ive had major clotting issues when getting blood drawn and in the last 6 weeks have not bled a drop from any needle sticks (so much cytokines perhaps). I was also having massive joint pain in my neck and shoulders, that subsided alot when i started the NAC. Some aids patients took it 3 times a day, but I think once a day will be the most i can tolerate so far.

Edit: I had horrible side effects from glutamine. Just read articles about how glutamine feeds cmv or herpes viruses, i cant remember which."

 

[Daffodil]

hi all. i am losing a lot of the gains i made from the antiretrovirals due to this infection in my head (i think). i have a lot more fatigue, malaise, some chest pain, night sweats, feverish feeling, and of course, bad brain fog and neck pain.

since my mom is unwell and will need surgery in several months, moving elsewhere to try cidofovir would be very difficult...not to mention, it would totally bankrupt my mother.

my plan now is to contact a doctor i knew in NYC and beg him to let me try cidofovir. if he agrees to prescribe it, i think i can find a private infusion centre in buffalo where i can travel to get the drug and return home the same day. i also need my local doctor to agree to do bloodwork, despite his being against my trying the drug.

i am feeling very discouraged about feeling sick again. i am going to try to start the drug as soon as i can.....perhaps in 2 weeks, if everyone cooperates.

sue
xoxo

 

[heapsreal]

good luck, i hope it works out for u and your mum.

cheers!!!

 

[ukxmrv]

Sorry to hear about the infection, Sue. I'm battled a sinus infection and it's really been getting me down.

Also very sorry to hear about your poor mother. It can't be good for you to have her health concerns as a worry either.

Sending a gentle hug in your direction. Please let us know how you get on with the doc

(((SUE)))

 

[Charles555nc]

Wow, if this drug works for you I will totally drive all over the place to get it.

Goodluck Daffodil. I think cidofovir is the only thing I havent tried or been excluded from (ampligen).

Let me restate that I think everyone should be taking some zinc once a day (I had blisters that turned to scars before starting my zinc once a day), and small amounts of melatonin to help sleep/boost immune system. I also use alpha lipoic acid 100mg once every 4 days and some Edta suppositories for over all well being, and trying NAC every 4 days now too.

Wish you the best Daffodil, really. We are brave people seeking treatment! We are doing the best with the deck of cards we were dealt.

 

[Daffodil]

thanks charles, uk, heap

i called several infusion places in the US, near canada, but none of them agreed to infuse cidofovir. i also found out it is a 4 - 5 hr infusion..i thought it was only one hour. i think this drug is only done in hospitals. dr. lerner had to appeal to the ethics committee at beaumont before they OK'd me for the treatment there. and hospitals charge so much, i couldnt afford it.

my NYC doc might help me, but i am sure i would have to move near there, pay him, pay for frequent bloodwork and urine tests, the drug, and the infusion...not to mention the hydration and probenacid. oh, and other tests he will want me to have along the way.

this is all looking very bad. but my head is terrible. many of my gains in energy are slipping away.

in april of 2011, my NK cell function was only 7.5...so that means i will probably just relapse after i finish the cidofovir anyway. the NK cell function determines the whole thing, according to docs.

you know..this is awful..but even if it ruins everything for my mom, i see no other way but to try to pay for this drug for as many months as i can. what else can i do? i cant just sit here in agony and wait to die.

sorry for the depressing post
sue
xoxo

 

[heapsreal]

Symptom management, would your doctor give you strong pain medication to help deal with the pain while u continue undergoing your current treatment, its alot cheaper and may give you a better quality of life. Maybe fentanyl or morphine patches etc. Also keep persuing ways to improve nk function, add immunovir or cycloferron.
http://www.drugspro.org/skin-problems/cycloferon.html
http://portal1.democms.ru/resources/files/INSTRUCTION-for-Cycloferon-tablets.pdf

INDICATIONS for Cyloferon
In adults Cycloferon is recommended during combined therapy of:
- herpes infections,
- acute enteric infection,
- chronic viral hepatitis B and C,
- influenza and acute respiratory infections,
- neural infections (aseptic (serous) meningitis, Lyme disease),
- HIV infection (stages 2A-3B),
- secondary immunodeficiency, associated with chronic bacterial and fungal
infections.

cheers!!!

 

[heapsreal]

Pharmacodynamics. Cycloferon is a low-molecular-weight inducer of interferon, which defines
a wide range of its biological activities (antiviral, immunomodulating, anti-inflammatory,
antiproliferative, antineoplastic etc.) The medicine induces high titers of ?- and ?-interferon in
organs and tissues, containing lymphoid elements (mucous of small intestine, spleen, liver, and
lungs), and crosses the blood-brain barrier. Cycloferon is very competent at curing diseases
caused by viruses of tick-borne encephalitis, influenza, hepatitis, herpes, cytomegalovirus,
human immunodeficiency virus (HIV), and various enteroviruses. It amplifies the antibacterial
action of antibiotics used in therapy of acute enteric infection. The medicine acts as
anticarcinogenic and anti-metastatic drug, thus preventing the formation of tumors through the
activation of immune response in organism. Immunomodulating action of Cycloferon is
manifested both as activation of phagocytosis, of cytotoxic T-cells and natural-killer-cells and as
organism immune status correction at immunodeficiency disorders of different genesis.

 

[Charles555nc]

Daffodil try taking l-glutamine briefly,

If you get worse, it could point to the cmv infection u think it is. I didnt sleep for 3 days on glutamine and had huge pain and lost alot of weight...now it makes sense.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2812398/

although theres also this
http://www.ncbi.nlm.nih.gov/pubmed/3489814

Antiretrovirals dont seem the be the cure for us, they are very toxic drugs, you might feel better off of them. You've done a great trial of them imo.

 

[Daffodil]

hi guys. thanks for all the suggestions...i wanted cycloferon but strangely, my doc doesnt let me take anything else..i dont know why!

charles...no CMV...HHV6 is what i think it is. i dont think i have been exposed to CMV.

well..my fortunes may be changing...i spent hours and hours on the phone, and brainstormed. since no infusion clinics will give me the drug near here and i cannot afford to move and go to hospitals to get the drug...why not hire a private nurse to come and give it to me!? now those companies are also overseen by doctors who will say no....but i found one who said "probably we can do it if your doc sends documentaion, etc.".

this is an american company since i cant get the drug across the border w/out a lot of trouble...so i go to buffalo, get a hotel room, get the infusion, and come back. i can do the bloodwork here (my local doc agreed to monitor me). probably it will cost about as much as it would at. dr. peterson's, but at least this way, i can take care of my mom.

now..all i need is to travel to see the doc who said he would give me the drug rx, get all the testing he wants, and hope the nursing comapny will allow it. but i am getting closer.

the hospital infusions would be over $3000 but at-home infusions shouldnt come to more than $1400. of course, i have to factor in travel and my american doctor wanting me to consult with him periodically.

not everyone can tolerate the drug either...but you find that out rather quickly.

if my NK killer cell function improves as a result of the antiretrovirals, maybe i wont relapse if the drug works!

if it fails, at least i have some hope for a while....


will keep you guys posted.

thanks for reading,
sue
xooxox

 

[ukxmrv]

Good brainstorming Sue.

I found a nurse to do a home infusion when I had IVIG a couple of times. They sent a nurse and I got the drugs from elsewhere.

Just a hassle for you to travel and then have to organise this all of this.

Hope springs eternal though and I appreciate your spirit!

 

[undcvr]

Another combo to think about and something that I have been looking at myself is Ribavarin and Valcyte. This is an oral combo so supposedly less toxic than an IV.

 

[Daffodil]

hi und. i have thought about ribavarin. i like the idea. but i am SO done with valcyte. ive taken it for like 3.5 years now..it never helps me. and i cannot up the dose cuz my liver reacts badly. if i see that pink pill again i am gonna scream. i have so much of it, laying around like candy ..i feel so bad for the people who cannot afford it and go blind from CMV retinitis!

thanks uk!.i actually dont mind organizing it...makes me feel less helpless through this mess! and i have come to kind of like hotels by now LOL

thanks
sue

 

[heapsreal]

Thats great news that u can get the infusions, i hope it all works out for u.

cheers!!!

 

[Daffodil]

thanks, heap. it still depends on approval of the infusion company but i am hopeful. with cidofovir, everyone seems to say NO! i hope this company doesn't.

my energy has been holding up mostly, though i still pay the next day if i overdo it. yesterday, i was able to go shopping at the mall, clean a little, and cook a little.

because my head / neck is still affected, the days when i have to make a lot of phone calls, set up appts etc...are the worse ones. any mental energy leaves me sick.

i wake up at night often due to discomfort in my head and neck. it is awful!

i have been trying to ask doctors why my NK cell function (LU30) was only at 7.5 after a year of ARV's, but i dont think anyone knows. this is greatly troubling because i dont want my mom to go broke from cidofovir, only to have me relapse if it works.

after 20 years, could NK cell function even return?? if it was going to return, wouldn't it have by now??