Anyone here used HIV/AIDS treatment for CFS?

Hip

Hip

Senior Member
Messages
18,138
JinZ said:
Any link to tenofovir information regarding Dr. Chia? He has me on lamiduvine and if it doesn't work he wants to move me to Tenofovir.
Click to expand...

I've only seen a few comments from his patients, such as the fact Dr Chia finds that less than one third of his patients respond to tenofovir (although when it works for a patient, he says the benefits are significant). Refs: 1 2
 
junkcrap50

junkcrap50

Senior Member
Messages
1,391
I've been on Descovy (Emtricitabine, Tenofovir Alafenamide) for 1 month now and have noticed the past 5 days that I'm feeling pretty good and a real, significant improvement. I can't think of attributing my improvement to anything else. In fact, I've forgotten to take my Thymosin Alpha-1 and Thymosin Beta-4 peptides the past week, which I've relied on heavily. In the past, if I miss more than 2 days of these peptides, I would go back to being mostly bed bound, severe malaise, headaches, herxing feeling, irritable. And no, I am 100% certain that temporarily stopping these peptides would not lead to improvement. Every time in the past 9 months, a day or two miss would lead to a great flare up of my symptoms.

I feel like I have more stamina (not necessarily more energy, well maybe a bit, but I can last longer doing things), a little clearer thinking, and definitely more motivation. I had to help a sibling with a school assignment, and I was surprised how capable of doing it I was. And that I could work at it for several hours in one sitting. I even felt so good, that I finally thought I could even try going back to finish my schooling.

Just wanted to leave a note or comment on, what I think is success to ARVs. I'm still tepid on whether or not to attribute to it, and I will talk to my doctor to see if any of his other patients have noticed anything.
 
Hip

Hip

Senior Member
Messages
18,138
junkcrap50 said:
I've been on Descovy (Emtricitabine, Tenofovir Alafenamide) for 1 month now and have noticed the past 5 days that I'm feeling pretty good and a real, significant improvement.
Click to expand...

Dr Chia has been using tenofovir for ME/CFS, and although he finds less than 1 in 3 patients respond to it, when they do respond, the benefits are major.
 
mariovitali

mariovitali

Senior Member
Messages
1,214
@ScottTriGuy Thanks !

I never heard about Thymosins so i had looked it up.


It is interesting that Thymosin Beta-4 may be used for NAFLD and Liver disease in general :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5643779/

From the paper linked above we read :

Thymosin beta 4 (Tβ4), a G-actin sequestering peptide, regulates actin polymerization in mammalian cells. In addition, studies have reported anti-inflammatory, insulin-sensitizing, and anti-fibrotic effects of Tβ4. However, no research has been done to investigate the effects of Tβ4 on NAFLD. Based on the findings above mentioned, we hypothesize that Tβ4 may represent an effective treatment for NAFLD.
Click to expand...

We note that Tβ4 regulates actin polymerization and also has anti-fibrotic effects.

Let's revisit on what machine learning has found regarding the role of G-Actin :

https://forums.phoenixrising.me/ind...sted-research-on-cfs.51283/page-5#post-897244

and also note the importance of MERTK (Vitamin K-related) in regulation of actin polymerization :

https://forums.phoenixrising.me/ind...s-discussion-thread.53372/page-27#post-891760

@Hip

There is one thing i do not understand perhaps you could help ? It is still not clear to me as to whether ME/CFS patients have active infections of any virus. If i recall correctly Ron said that "there are no viruses" being found so far.

Is this correct?
 
Last edited:
X

xcell

Always looking for new knowledge and options!
Messages
94
Location
Germany
Hello @JinZ
it would be interesting if Dr Chia does give you additional things like Cistus Incanus or Raltegravir?

Hello @junkcrap50
do you only get Descovy and no integrase inhibitor like Cistus Incanus or Raltegravir?

Hello @mariovitali
I'm pretty sure that there are active (hidden) infections in ME! How else are the antiviral and antiretroviral treatments working (yes, immune modulation)?
Davis seems to look for the wrong viruses in the wrong place.
 
JES

JES

Senior Member
Messages
1,374
xcell said:
I'm pretty sure that there are active (hidden) infections in ME! How else are the antiviral and antiretroviral treatments working (yes, immune modulation)?
Davis seems to look for the wrong viruses in the wrong place.
Click to expand...

Antivirals are not only acting on the virus, they have metabolic and other immune system effects as well. In fact it is being speculated that one reason antivirals work for some of us is due to these indirect effects. Due to the same mechanisms, there is also a risk that long-term antiviral use can have a damaging effect on the mitochondria.

Basically too little evidence is present to understand the correlation between improvement from antivirals and reduced "viral load" in ME/CFS. Dr. Jose Montoya, who is an expert in this field, even stopped measuring the antibody titers in patients because he found that they didn't correlate with improvement, even in those patients who took antivirals and improved.
 
X

xcell

Always looking for new knowledge and options!
Messages
94
Location
Germany
jpcv said:
I´ve been taking tenofovir for the last 4 or 5 months for Hep B, it Works great for hep B but it didn´t change anything related to my ME
Click to expand...
Do you get additional things like Cistus Incanus or Raltegravir?
It seems that Tenofovir alone is not enough for ME.
 
junkcrap50

junkcrap50

Senior Member
Messages
1,391
xcell said:
Hello @junkcrap50
do you only get Descovy and no integrase inhibitor like Cistus Incanus or Raltegravir?
Click to expand...

Correct. Only Descovy. I forgot about Cistus Incanus, I didn't really make a mental note of it when reading some of these ARV threads, because I hadn't noticed a benefit from the Descovy. So, I'll return back to it and research it some more. Have you taken it? Any results? What relevance does Citrus Incanus have to CFS, specifically? Also, is there any stories of integrase inhibitors helping CFS?

JES said:
Antivirals are not only acting on the virus, they have metabolic and other immune system effects as well. In fact it is being speculated that one reason antivirals work for some of us is due to these indirect effects. Due to the same mechanisms, there is also a risk that long-term antiviral use can have a damaging effect on the mitochondria.

Basically too little evidence is present to understand the correlation between improvement from antivirals and reduced "viral load" in ME/CFS. Dr. Jose Montoya, who is an expert in this field, even stopped measuring the antibody titers in patients because he found that they didn't correlate with improvement, even in those patients who took antivirals and improved.
Click to expand...

There's also the possibility that the antivirals are effective at eliminating "cross-talk" between viruses and cells. Some viral DNA could still be floating around, producing viral proteins, which can communicate and have effects on cells and the body. As most anti-virals work by inhibiting viral replication, they do not eliminate any viral proteins and the harmful effects they could have.
 
Last edited:
X

xcell

Always looking for new knowledge and options!
Messages
94
Location
Germany
Cistus Incanus: https://www.nature.com/articles/sre...ted&code=48d8fd7b-008c-45a6-9523-adbcf9a496fc
https://www.helmholtz-muenchen.de/aktuelles/uebersicht/pressemitteilungnews/article/32074/index.html

Here you can read about the Viread+Cistus (or Raltegravir)+... treatment:
http://www.drmyhill.co.uk/wiki/A_Regime_for_Antiretroviral_Treatment_of_Myalgic_Encephalomyelitis
With lot of links to studies (they are missing on Dr Myhill´s page):
http://meversuscfs.blogspot.com/2018/06/arztanfragen-mein-therapieregime-fur.html
 
Hip

Hip

Senior Member
Messages
18,138
mariovitali said:
There is one thing i do not understand perhaps you could help ? It is still not clear to me as to whether ME/CFS patients have active infections of any virus. If i recall correctly Ron said that "there are no viruses" being found so far.

Is this correct?
Click to expand...

Ron Davis used a new method for detecting DNA virus infections, and using this method found no evidence of active DNA virus infection.

However, you don't need to have an active infection to cause trouble; viruses like EBV, which normally live in a dormant and latent state in B-cells in most of the population, are able to partially awaken in these cells (EBV has 3 latency states: the first state is 100% dormant, but the other 2 are partially awakened). And partially awakened states may also cause trouble. And indeed one study found that ME/CFS may be linked to partially awakened EBV.

As far as I am aware, Ron Davis's method would not detect partially awakened DNA viruses (though I am not sure of this).


And Ron Davis has not yet tested for RNA viruses. Enterovirus, one of the main viruses linked to ME/CFS, is an RNA virus. So Davis would not be able to detect enterovirus with his current DNA virus testing.

There is plenty of evidence that ME/CFS patients have chronic active infections of enterovirus in their body tissues, when you take tissue biopsies of muscle, gut or brain and test the tissues for enterovirus infection.
 
Last edited:
Hip

Hip

Senior Member
Messages
18,138
xcell said:
Cistus Incanus: https://www.nature.com/articles/sre...ted&code=48d8fd7b-008c-45a6-9523-adbcf9a496fc
https://www.helmholtz-muenchen.de/aktuelles/uebersicht/pressemitteilungnews/article/32074/index.html
Click to expand...

That study shows Cistus Incanus is antiviral for HIV in vitro. But that does not mean it will work in vivo (in the body) when this herb is taken orally.

This study says the in vitro EC50 of Cistus Incanus for HIV is around 5 μg/ml. By a rough calculation I just did now, that will not have any useful antiviral effect in vivo.

The reason studies investigate herbs for antiviral effects is usually not because the herb is going to be a useful clinical treatment for a virus (although in some cases the herbs can have useful clinical antiviral effect), but because chemical compounds in the herb with antiviral effects in vitro might be used as lead compounds to develop into new compounds that may be more potent, and could therefore be made into an antiviral drug.
 
Last edited:
Hip

Hip

Senior Member
Messages
18,138
xcell said:
@Hip If you like you can search "Cistus" in the text on this page and then click all the following links:
http://meversuscfs.blogspot.com/2018/06/arztanfragen-mein-therapieregime-fur.html

There you find lot of studies showing other positive effects (against infections of the upper respiratory tract, antibacterial, antiviral and antifungal) of Cistus!
Click to expand...

Almost all of those studies are in vitro, which means that you cannot assume the results apply in vivo. It's often easy to produce potent antiviral effects in vitro, because you can use high concentration of the antiviral compound. But in vivo those same high concentration are usually not obtainable for various reasons (eg, due to a maximum safe oral dose, or due to poor bioavailability).

The only study in your link with was in vivo was this one, which found that Cistus incanus reduced symptoms of upper respiratory infections. However, that's not likely due to an antiviral effect, but due to the potent anti-inflammatory effects of this herb (just like taking an aspirin can reduce symptoms of a fever).

So no evidence for an in vivo antiviral effect from Cistus incanus.
 
IThinkImTurningJapanese

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
C

cornwellsb

Messages
38
I have not been active in a long time and used to post in this very thread about 3 years ago. My progress started with truvada. This is very easy to get your hands on now days. My dr was Susan Levine in nyc. I was on valcyte and valtrex for a while. I just got the truvada prescription from a normal health clinic. I’m almost back to 100% of where I was before my cfs started. I can’t prove it was truvada but when I started taking it was when I started going up hill rapidly and within a year I’m normal. Enough that I started posting about it on here in 2016. I stoped the other antivirals a long time ago and only took them 6 months or so which may have contributed to my rise. Still on truvada only. Stopped taking any other supplements other than a multi vit, fish oil and a few others.

https://forums.phoenixrising.me/ind...ds-treatment-for-cfs.45823/page-7#post-774554
 
T

taa2

Messages
36
cornwellsb said:
I have not been active in a long time and used to post in this very thread about 3 years ago. My progress started with truvada. This is very easy to get your hands on now days. My dr was Susan Levine in nyc. I was on valcyte and valtrex for a while. I just got the truvada prescription from a normal health clinic. I’m almost back to 100% of where I was before my cfs started. I can’t prove it was truvada but when I started taking it was when I started going up hill rapidly and within a year I’m normal. Enough that I started posting about it on here in 2016. I stoped the other antivirals a long time ago and only took them 6 months or so which may have contributed to my rise. Still on truvada only. Stopped taking any other supplements other than a multi vit, fish oil and a few others.

https://forums.phoenixrising.me/ind...ds-treatment-for-cfs.45823/page-7#post-774554
Click to expand...
Really happy for you! I am still trying to decide if I should try this or not due to potential bad reactions/worsened fatigue. Can I ask how severe you were and was your primary symptom fatigue?
 
Last edited:
You must log in or register to reply here.
Back