Anyone here used HIV/AIDS treatment for CFS?

[a5610183]

@undiagnosed This is a global problem, many countries have, Japan, Southeast Asia, Russia, Africa, China, have to ask the state to help, we must unite, I believe will be the government's financial help

 

[heapsreal]

Viread is affordable but raltegravir is costly. Id like to add it to viread and see of i can squeeze mote o
Improvement.

 

[undiagnosed]

@a5610183, I'm not sure we'll be able to count on any significant government funding in the near future. Most of the research so far is being funded privately. The government agencies I've communicated with don't give a shit.

 

[undiagnosed]

@heapsreal, Are you paying out of pocket? Not sure how things work in Australia? In the US, I could get Truvada under the guise of PrEP that would probably be covered by insurance. However, I would prefer Descovy (TAF+FTC) which wouldn't be covered in that case and would be unaffordable. Also, any of the newer integrase inhibitors like Tivicay would be way too expensive as that also wouldn't be covered without a diagnosis.

 

[taa2]

I know of a handful of people with ME who have now improved considerably with HIV meds, and heard from one more only a couple of days ago.

Dr W Weir has had success with a small group too.

wow I really am thinking of trying a prEp/HIV medicine as I can easly get it here in the UK from safe online pharmacies verified from a London clinic. I am just worried it would just make me worse. I'm so desperate to try anything atm tho as I am 80% housebound. Do you know if there are any major risks?

 

[Daffodil]

in Canada, I got the drugs right away as soon as the doc prescribed them. I think they assume you have HIV if you are prescribed the medicine. No one asked for proof.

But then again, I had private insurance for prescriptions so maybe that's why

I think Tenofovir is prescribed for Hep C too...or Hep B? cannot rememebr

 

[Daffodil]

@thruth1 about the MS/Raltegravir trial:

"No differences or even encouraging trends were seen between the treatment and observational phases, either for the primary outcome or for any of the secondary endpoints, .."

 

[ScottTriGuy]

wow I really am thinking of trying a prEp/HIV medicine as I can easly get it here in the UK from safe online pharmacies verified from a London clinic. I am just worried it would just make me worse. I'm so desperate to try anything atm tho as I am 80% housebound. Do you know if there are any major risks?

I have been on at least 3 ARVs for 15 years. I've had ME for 4.5 years, so it didn't prevent ME. I also had 2 complete remissions during that time.

I have very occasional nausea from the ARVs, but minor league compared to ME symptoms. (I started on AZT back in 2000, and it was a lot of nausea.)

I've wondered if the ARVs have prevented me from being a lot sicker. Although I was house bound for a month 1.5 years ago.

As an aside, I was chatting with a colleague the other day and he was having trouble finding HIV participants for his research because the criteria was a CD4 count less then 350. (He's testing a probiotic in those folks to see if it impacts CD4s.) I think that's a testament to the effectiveness of ARVs on HIV. So many HIV treatment options, so much HIV research funding, so hard for me to work in it with ME when we have so little.

 

[heapsreal]

@heapsreal, Are you paying out of pocket? Not sure how things work in Australia? In the US, I could get Truvada under the guise of PrEP that would probably be covered by insurance. However, I would prefer Descovy (TAF+FTC) which wouldn't be covered in that case and would be unaffordable. Also, any of the newer integrase inhibitors like Tivicay would be way too expensive as that also wouldn't be covered without a diagnosis.

I self treat with viread as no dr would do this in australia without losing their license. I buy viread online but get regular blood work.

My doctor prescribes famvir so i get regular blood work to check liver and kidney function for that which would cover any potential issues from viread.

 

[Daffodil]

@ScottTriGuy they do notice a lot less MS in people on HIV meds....

 

[ScottTriGuy]

@ScottTriGuy they do notice a lot less MS in people on HIV meds....

That's interesting, wonder what's going on there?

 

[Keela Too]

Can't help thinking that the retrovirus angle has not yet been fully explored.

 

[Hope4us]

Can't help thinking that the retrovirus angle has not yet been fully explored.

That is something that have hunted Me/cfs as the main cause for many years, since the very first outbreaks.
Now is in the spot light again,
A lot of people using ART,s are getting good result, just the right ones , carefully monitored at the right doses.

 

[taa2]

I self treat with viread as no dr would do this in australia without losing their license. I buy viread online but get regular blood work.

My doctor prescribes famvir so i get regular blood work to check liver and kidney function for that which would cover any potential issues from viread.

Has the viread/tenofovir improved your CFS/ME?

 

[heapsreal]

Has the viread/tenofovir improved your CFS/ME?

Yes very much so. Im alot more active. If 10 was normal then im an 8 or a 9??

 

[a5610183]

The disease is worldwide, in Thailand, the United States, Russia, Japan, Britain, China, the infectious disease is very strong, the government suppressed the world to suppress, I hope that our patients together, united, this Disease is associated with the political and economic, and vaccine-related, hope that we all around the world on the same front, to find out the truth of this disease. This is my e-mail a5610183 at outlook dot com once again that this disease alone will not succeed in a country

 

[a5610183]

@heapsreal, Are you paying out of pocket? Not sure how things work in Australia? In the US, I could get Truvada under the guise of PrEP that would probably be covered by insurance. However, I would prefer Descovy (TAF+FTC) which wouldn't be covered in that case and would be unaffordable. Also, any of the newer integrase inhibitors like Tivicay would be way too expensive as that also wouldn't be covered without a diagnosis.

Recently, okay? I can not reach you, do not know how to send you private letters

 

[Daffodil]

maybe those who are treating early enough can get better with just ARV's....before some kind of bacteria has taken hold due to weaker immune system? or a herpes virus...

maybe the ARV's are acting on HERV.....

but then the disease seems to be contagious sometimes....

but then sometimes not....

ugh same circles I have been going in for decades.

 

[heapsreal]

maybe those who are treating early enough can get better with just ARV's....before some kind of bacteria has taken hold due to weaker immune system? or a herpes virus...

maybe the ARV's are acting on HERV.....

but then the disease seems to be contagious sometimes....

but then sometimes not....

ugh same circles I have been going in for decades.

Sometimes it seems pointless trying to understand how things work or on what. If u take something and it helps , stick with it. It will be decades before real research finds descent treatments???

 

[Vineyard1]

I have issues with varicella zoster virus/shingles and probably cmv going by previous years, so for that i take famvir 500mg twice a day. Abx off and on for sinusitis. This regime helps alot.

I have been getting head shingles reactivating every 6 weeks or so which causes bad headaches but i have a treatment plan i use for several days which stops it in its tracks. Lysine, zantac(3days) and cycloferon for 10 days which improves nk and t cell function that helps fight herpes viruses.

Otherwise antioxidants, hormones- dhea, pregnenolone and desmopressin.

Also alternate sleep meds as this has been one of my worst symptoms of cfs and this is helping.

The above has all helped but only so far. The addition of tenofovir has helped my function further.

Im working 4 days a week and the last couple of months i have had to do some heavy gardening to clean up our house after being unable to do so from cfs. This was mostly cutting trees down, its like a dam jungle. So most of my days off ive been putting in 4 to 6 hrs of cutting trees down. Ive also been doing some weight training a couple days a week.

I have the odd night of insomnia which smashes me for a day but quickly recover. But my activity has greatly increased. Im not 100 % of my pre cfs state but im doing pretty good none the less. Im always on the watch for cfs symptoms and may aggressively rest but only a day. If needed do the above virus crash treatment i mentioned above for shingles. Turns things around quickly.