Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

[heapsreal]

Heapsreal, please indicate how long you were on this drug before starting to see improvement. And how long for you to reach 8 or 9 out of 10. Thank you.

Stop started a few times but approx 12 month's. Stop stsrt was to prove to myself its helping, which it was.

 

[perrier]

Stop started a few times but approx 12 month's. Stop stsrt was to prove to myself its helping, which it was.

Thanks for the info. And may I ask how ill you were: mild?medium?severe? And was it a long time or short time? Hope it's not too invasive to ask. Thanks.

 

[Chugi]

Matcha green tea is a proven TH2 booster, which is not what you want in CFS/ME. http://www.precisionnutrition.com/rr-green-tea-hazards

Interesting...do you know more nutrition which are th2 booster and not good for me/cfs?

 

[heapsreal]

Thanks for the info. And may I ask how ill you were: mild?medium?severe? And was it a long time or short time? Hope it's not too invasive to ask. Thanks.

Cfs onset was 2002. Moderate cfs around 4 to 6 out of 10 on dr lerners scale. Antiviral famvir has helped alot also?

 

[Jesse2233]

Cfs onset was 2002. Moderate cfs around 4 to 6 out of 10 on dr lerners scale. Antiviral famvir has helped alot also?

Heaps have you tested for enteroviruses or just herpes family?

 

[wastwater]

I have no idea what I would try,I followed my circumstantial evidence and ended up at leukaemia related and B cells being important
I don’t think doctors would prescribe anything more than counselling and I’m not sure what I would want

 

[heapsreal]

Heaps have you tested for enteroviruses or just herpes family?

No to enteroviruses. My cfs dr didnt think testing for it was accurate and this seems to be the case dr chia has made and seems to be more accurate from stomache biopsy testing.

After talking with a pathologist recently about different infectious testing etc it doesnt seem that there is any good testing for chronic infection , from blood anyway? Unless you have a brand new infection or a reactivated infection that puts you into sepsis, they just arent accurate.

Igg antibody testing can tell you if you have had that infection but it cant tell you if its active chronic low grade or if infection is localized in nerves etc. And one is also reliant on the immune system to make those antibodies also. It seems quite common that some cfsers test positive igg to ebv which is suppose to be positive forever but for some reason they cant produce these antibodies later in time as their immune system has lost its ability too.

I think if one had a list of past igg positive infections and look into different symptoms of these infections, then take an educated guess and treat and see if one improves , is probably as accurate as one will get.

I think if one gets a full blood count, lymphocyte subset test, nk function and immunoglobulins, and its showing abnormalities then its possible one could have some type of infection going on, what that is ???? Its an educated guess. Again Treatment trials is probably going to be more accurate. Try antivirals and if after a few months theres no improvement than its probably not an issue but dont disregard it as a possible issue in the future.

One could try a broad spectrum and see how they respond but there does seem to be a lot of cases of getting worse before getting better with abx. In my early days of cfs i was given abx for an ear infection etc etc and noticed i felt terrible but when i stopped treatment i felt better and this happened a few times. I then found information on mycoplasma or chlamydia pneumonia as a possible cause of cfs and searched out testing. Testing available just wasnt available to be accurate to say its an ongoing infection. It was a case of trialling abx and see.

Ive tried many things a list too long to right but i have had some big shifts in improvement with abx, avs and arvs. Many will say its their immune modulating effects, maybe, we just dont know. Its possible its a combination of modulating the immune system in a soup of different bugs that our immune system just cant control????

Sorry for the rant. My opinion is i dont think theres the technology to really know. I just decided not to sit on my hands and wait for technology to understand exactly whats going on but instead use trial and error.

 

[fingers2022]

Matcha green tea is a proven TH2 booster, which is not what you want in CFS/ME. http://www.precisionnutrition.com/rr-green-tea-hazards

Definitely a minefield, eh? Back to the usual advice...don't OD on anything.

 

[Hip]

Interesting that there is a clinical trial examining whether antiretroviral drugs can treat amyotrophic lateral sclerosis (ALS), a motor neuron disease. Some patients with ALS have high levels of the human endogenous retrovirus HERV-K in their blood.

The clinical trial involves taking four antiretrovirals twice daily: darunavir, ritonavir, raltegravir and zidovudine (AZT).

As mentioned earlier, Dr Brigitte Huber showed that there is increased HERV-K18 activity in the post-mononucleosis subset of ME/CFS. HERV-K18 is also linked to the autoimmune diseases of type 1 diabetes and multiple sclerosis.


So if tenofovir is helping ME/CFS, it could be through its antiviral effects on HERV-K18.

 

[patient.journey]

Interesting that there is a clinical trial examining whether antiretroviral drugs can treat amyotrophic lateral sclerosis (ALS), a motor neuron disease. Some patients with ALS have high levels of the human endogenous retrovirus HERV-K in their blood.

The clinical trial involves taking four antiretrovirals twice daily: darunavir, ritonavir, raltegravir and zidovudine (AZT).

As mentioned earlier, Dr Brigitte Huber showed that there is increased HERV-K18 activity in the post-mononucleosis subset of ME/CFS. HERV-K18 is also linked to the autoimmune diseases of type 1 diabetes and multiple sclerosis.


So if tenofovir is helping ME/CFS, it could be through its antiviral effects on HERV-K18.

I was diagnosed with ALS , lupus , fabromailga and other stuff after the CFS diagnose , never gave a look at those diagnose because all of them were not meeting the criteria of those sickness but it's just a symptoms like them and my ANA go high postitive up to 1280 then go negative and my neurological problem could be due CFS or any other underlying infection I have

 

[Jesse2233]

@Patrick*'s latest blog post mentions Dr C prescribing him tenofovir

I had my latest appointment with Dr. C last week. Dr. C is my ME specialist doctor, who I've written about under the Equilibrant Label in this blog.

Viread

Dr. C prefers to treat ME primarily with oxymatrine, and secondarily, he prescribes various anti-viral prescriptions. Lately, he's been prescribing the anti-viral drug Viread (tenofovir). He states that about 1/3 of his ME patients who try Viread have experienced improvements. In a few cases, the Viread patients have achieved remissions, but this is the exception.

Viread was developed and approved to treat hepatitis B and HIV. Prescribing it to ME patients is an off-label use. It can be toxic to the liver if used for years, and so Dr. C insists on regular kidney function tests for those who are going to try it.

http://quixoticmeblog.blogspot.com/2017/10/dr-c-prescribes-viread.html?m=1

His blog is great btw for those who don't already read it

 

[IThinkImTurningJapanese]

Gay community are taking it in a daily basis and they are living fine , some get problems with the kidney functions while others do great but for the most of them there are no side effects except nausea and headaches as I talked with them !

Silymarin, Milk Thistle Extract, can be quite helpful in this situation.

 

[mrmichaelfreedmen]

Interesting...do you know more nutrition which are th2 booster and not good for me/cfs?

@Hip has compiled a list. He may supply the url here or just search for his posts via the forum search function.

 

[Hip]

Th2 to Th1 shifters listed in this post.

 

[IThinkImTurningJapanese]

So if tenofovir is helping ME/CFS, it could be through its antiviral effects on HERV-K18.

Antiretroviral effects, right?

 

[Hip]

Antiretroviral effects, right?

That's right. HERVs are built-in retroviruses or fragmentary elements of retroviruses that we are born with, existing within the human genome. Some HERVs can create viral proteins, and some HERV can even create full viral particles. Antiretroviral drugs have been shown to inhibit HERV-K.

 

[IThinkImTurningJapanese]

Some HERVs can create viral proteins, and some HERV can even create full viral particles. Antiretroviral drugs have been shown to inhibit HERV-K.

So you are saying that tenofovir's "antiviral" effect could be responsible for the benefit?

 

[Hip]

So you are saying that tenofovir's "antiviral" effect could be responsible for the benefit?

Yes, the antiretroviral action of tenofovir may conceivably be suppressing HERV-K18 gene expression and activity in ME/CFS patients. HERV-K18 is the remains of an ancient retrovirus that infected humanity millennia ago, and got incorporated into the human genome (remember that retroviruses splice their own genes into human DNA, so that their genes become part of our DNA).

The genes of HERV-K18 happen to encode for a superantigen. Superantigens designed to cause havoc and chaos for the immune system (superantigens are used by viruses and bacteria to throw a spanner in the works of the immune system).

So if tenofovir or raltegravir can suppress HERV-K18 gene expression, then it will help prevent the HERV-K18 superantigen from being produced, which in turn should allow the immune system to return more normal functioning.

 

[IThinkImTurningJapanese]

@Hip , No I'm asking whether it is the "antiviral", or the "antiretroviral" effect that you are referring to.

Numerous posts of yours have opened my eyes to the possibility of mistaking the reasons for a medicines effects.

 

[Hip]

I'm asking whether it is the "antiviral", or the "antiretroviral" effect that you are referring to.

Can you be more precise in your question. What is the "it" you are talking about?

Antiretroviral effects are antiviral effects. Antiretroviral means an antiviral effect against retroviruses.