Anyone here used HIV/AIDS treatment for CFS?

[mrmichaelfreedmen]

Where did you hear that? I know of several people, including myself, that have improved on lamivudine under his care. Lamivudine is not strictly an HIV drug, however.

Documented by Dr Chia multiple times, missed it? As you pointed out yourself lol Lamivudine is NOT strictly a HIV drug.

 

[sorin]

Lol so what are you saying? Dr Chia and his HIV patients are delusional?

No, I just wanted to simple say that "how many doctors so many different opinions". This is something that any of us experienced.

 

[IreneF]

wow. wow. wow. you have such high values. i would guess 100% positive these infections are active.

many CFS specialists have noticed that even just high IgG can mean active infection but regular doctors never agree with this. Montoya for example, will treat with antivirals in presence of high IgG

I don't think Montoya uses IgG that way anymore. He told me he wasn't seeing symptoms correlate with antibody levels. He still prescribes antivirals, though.

 

[mrmichaelfreedmen]

No, I just wanted to simple say that "how many doctors so many different opinions". This is something that any of us experienced.

Is english your first language? Your response doesn't make any sense to me. In any case, significant improvement in CFS/ME symptoms while taking HIV medications would be very easy to interpret, by ANY doctor.

However Dr. Chia has actually documented his patients having no improvement in there CFS/ME symptoms.

 

[sorin]

Is english your first language? Your response doesn't make any sense to me. In any case, significant improvement in CFS/ME symptoms while taking HIV medications would be very easy to interpret, by ANY doctor.

However Dr. Chia has actually documented his patients having no improvement in there CFS/ME symptoms.

No, english is not my native language, I wanted to say that every doctor has a different opinion on the same issue, so especially in a such mega sensitive topic as CFS is not unusual to see a lot of contradictory opinions! Actually you can see this from the fact that almost every top CFS doctor has his own theory about CFS cause: one says is EBV/CMV, other says is enterovirus, another that is Lyme, other that is gut, another that is retrovirus, and so on so forth...

 

[sorin]

I was reading this http://www.timeslive.co.za/news/2016/10/03/HIV-cure-close-as-disease-vanishes
seems to be quite new, and at the end of the article is said: "Professor Sarah Fidler, a consultant physician at Imperial College London, added: "This therapy is specifically designed to clear the body of all HIV viruses, including dormant ones."
Can anyone explain what means a "dormant HIV virus" and what is different from a "non-dormant HIV virus"?

 

[undiagnosed]

I was reading this http://www.timeslive.co.za/news/2016/10/03/HIV-cure-close-as-disease-vanishes
seems to be quite new, and at the end of the article is said: "Professor Sarah Fidler, a consultant physician at Imperial College London, added: "This therapy is specifically designed to clear the body of all HIV viruses, including dormant ones."
Can anyone explain what means a "dormant HIV virus" and what is different from a "non-dormant HIV virus"?

The "dormant HIV virus" is also know as the latent reservoir. It is made of resting CD4 and other cells that have HIV DNA integrated in them but are not actively producing HIV virions. The research you referenced is using a "kick and kill" method to activate the latent cells to produce virus so that drugs can target and destroy them. If all of the latent infected cells are not destroyed, they can eventually start producing HIV virions again in the absence of antiretroviral therapy.

 

[cornwellsb]

If you want to try HIV drugs on cfs/me it is very very easy in the US. The drug is called truvada ... It is basically viread and another AV. emtricitabine 200 mg and tenofovir disoproxil fumarate 300 mg. It is prescribed as PreP or pre exposure prevention for HIV which a large amount of people have been taking for 5 or 6 years for this purpose. It is supposed to be 95% effective at preventing HIV ... That being said, I have cfs and was recently diagnosed after 5 or 6 years of constant fatigue. I started taking prep as purely preventative measure against HIV about a year ago. I did notice a major change for the better in my fatigue but it did not go away completely. After looking for answers to my fatigue I was finally diagnosed with cfs and put on valcyte and valtrex (along with truvada). I noticed a drastic change almost over night from there and I'm doing quite well. I only put 2 + 2 together today and equate my original slowly getting better this year to truvada but this was not over night. I did notice a change after about 3 months. ... The addition of the other AVs must be fighting off something else. After adding valtrex, my headaches, blurry vision and dizziness ended (sometimes I still get a little dizzy) ... Fatigue is still there slightly but at 20% what it was.

Starting truvada moved me from a scale of 5 to about 7. Valtrex and valcyte have pushed me to 8 and some days 9. I am at the gym 6 days a week now which would have been absurd over a year ago.

Getting onto truvada is fairly easy and covered by most insurance (it's 2500 a month) half the gay population in NYC is on it now to prevent HIV infection and there are signs in every subway promoting it in NYC. The company gilead actually pays your copay.

If you want to try antivirals it is fairly easy to get in but requires the same testing as other antivirals every few months.

 

[cornwellsb]

In addition to the previous post, search for truvada or viread or tenofovir on this site. There is a post there about someone recovering almost completely using viread(tenofovir) and another AV.

http://forums.phoenixrising.me/index.php?threads/my-experience-on-antiretrovirals.41074/

 

[undiagnosed]

If you want to try HIV drugs on cfs/me it is very very easy in the US. The drug is called truvada ... It is basically viread and another AV. emtricitabine 200 mg and tenofovir disoproxil fumarate 300 mg. It is prescribed as PreP or pre exposure prevention for HIV which a large amount of people have been taking for 5 or 6 years for this purpose. It is supposed to be 95% effective at preventing HIV ... That being said, I have cfs and was recently diagnosed after 5 or 6 years of constant fatigue. I started taking prep as purely preventative measure against HIV about a year ago. I did notice a major change for the better in my fatigue but it did not go away completely. After looking for answers to my fatigue I was finally diagnosed with cfs and put on valcyte and valtrex (along with truvada). I noticed a drastic change almost over night from there and I'm doing quite well. I only put 2 + 2 together today and equate my original slowly getting better this year to truvada but this was not over night. I did notice a change after about 3 months. ... The addition of the other AVs must be fighting off something else. After adding valtrex, my headaches, blurry vision and dizziness ended (sometimes I still get a little dizzy) ... Fatigue is still there slightly but at 20% what it was.

Starting truvada moved me from a scale of 5 to about 7. Valtrex and valcyte have pushed me to 8 and some days 9. I am at the gym 6 days a week now which would have been absurd over a year ago.

Getting onto truvada is fairly easy and covered by most insurance (it's 2500 a month) half the gay population in NYC is on it now to prevent HIV infection and there are signs in every subway promoting it in NYC. The company gilead actually pays your copay.

If you want to try antivirals it is fairly easy to get in but requires the same testing as other antivirals every few months.

The only thing with that is if an underlying retrovirus similar to HIV was suspected, it may result in the development of resistance and inability to control the infection since only nucleoside analog reverse transcriptase inhibitors are being used. It's not as easy to get the other classes of HIV drugs such as integrase inhibitors.

 

[cornwellsb]

Possibly yes but At this point we have a choice of living our lives with cfs and hoping on a future cure 20 years from now (or finding some random herb or other medication that might help) or turning yourself into a Guinea pig. I'm choosing the self medication route as it seams there are very few options. I could also get cancer from all these AVs as well but I intend to try and cut back on some eventually. I've been taking this for over a year before cfs was even diagnosed so there is no turning back now. For now it seems to be working for me but some of this is still theory. Everyone is different. I have no evidence except for the fact that I personally feel better, Time will tell I suppose. I do have a cfs specialist (dr Susan Levine) I see regularly in NYC but everyone is guessing at this point.

 

[Sushi]

Possibly yes but At this point we have a choice of living our lives with cfs and hoping on a future cure 20 years from now (or finding some random herb or other medication that might help) or turning yourself into a Guinea pig.

Other options may well present themselves in the near future. Research has never been in a stronger position.

 

[undiagnosed]

Possibly yes but At this point we have a choice of living our lives with cfs and hoping on a future cure 20 years from now (or finding some random herb or other medication that might help) or turning yourself into a Guinea pig. I'm choosing the self medication route as it seams there are very few options. I could also get cancer from all these AVs as well but I intend to try and cut back on some eventually. I've been taking this for over a year before cfs was even diagnosed so there is no turning back now. For now it seems to be working for me but some of this is still theory. Everyone is different. I have no evidence except for the fact that I personally feel better, Time will tell I suppose. I do have a cfs specialist (dr Susan Levine) I see regularly in NYC but everyone is guessing at this point.

I hear ya. I've been trying to get access to an assay to look for reverse transcriptase activity. I haven't had any luck yet.

 

[sorin]

Today I saw this post
http://www.vitality101.com/health-a-z/when-to-use-antivirals-in-fibromyalgia-and-cfs
is quite interesting. It's about antivirals in CFS/fibromyalgia treatment

 

[Countrygirl]

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.

 

[sorin]

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.

Do you have any idea which specific HIV meds were used? Someone said that there are not HIV generic meds but depending on the subtype/sub-group of HIV one was infected then the treatment is prescribed. If that is correct, would mean that someone with HIV 1 subtype M- F would not take the same treatment with someone who has HIV 1 subtype M-A (the treatment for one would not be effective for the other)??? Not sure if this is true or correct though...

 

[cornwellsb]

Good article however I don't like that he threw out the term herx reaction as antivirals do not kill off viruses and only stop them from reproducing which is why it takes so long to see results. I think the herx reaction in these cases is down to the fact that you are ingesting some pretty strong chemicals.

 

[sorin]

antivirals do not kill off viruses and only stop them from reproducing which is why it takes so long to see results

However, is it possible somehow to kill the viruses? Or the best that can be done is to stop reproducing them? If it is not possible to kill them then that means one should take the antivirals for CMV, EBV, HSV, etc... for the rest of the life?!?!
Because if we stop taking Valtrex that means the viruses are reproducing again... On the other hand the perspective on taking Valtrex daily for the rest of the life is not so good...

 

[Countrygirl]

Do you have any idea which specific HIV meds were used? Someone said that there are not HIV generic meds but depending on the subtype/sub-group of HIV one was infected then the treatment is prescribed. If that is correct, would mean that someone with HIV 1 subtype M- F would not take the same treatment with someone who has HIV 1 subtype M-A (the treatment for one would not be effective for the other)??? Not sure if this is true or correct though...

@sorin The two used are viread and isentress.

Those who did not initially improve, lowered the dose and then successfully continued.

 

[cornwellsb]

Well I'm no expert but as I understand it, if you stop it from reproducing then eventually the virus becomes less and less actuve in your body to where it is at such a low level that your body can fight it off. Technically speaking it could take a few years as your cells die off naturally to get this down to acceptable levels. Some people see results in as little as 6 months. Some people may have to take valtrex for a very long time ... I've heard others say they take it at times of a flare up a few times a year after they have recovered . Some people quit completely after healed and I've heard of others relapsing after quiting valtrex a few years later. Some people notice no benefit at all.