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

[Stretched]

@Stretched, are you saying that these antiretroviral drugs have efficacy against HHV-6?

I have to rely on mechanisms for how the work:
There are no pharmaceuticals approved specifically for treating HHV-6 infection, although the usage of Cytomegalovirustreatments (valganciclovir, ganciclovir,[87]cidofovir, and foscarnet) have shown some success.[6] These drugs are given with the intent of inhibiting proper DNA polymerization by competing with deoxy triphosphate nucleotides[87] or specifically inactivating viral DNA polymerases.[2]

Finding a treatment can be difficult when HHV-6 reactivation occurs following transplant surgery because transplant medications include immunosuppressants.[88

It takes more to definitively answer, which is why I posed the ?... . Transplants are known
to use AVs and ARVs.

 

[Stretched]

@Stretched, are you saying that these antiretroviral drugs have efficacy against HHV-6?

I posed the ? Based on mechanics of drug
efficacy:
The viruses in an infected person's body are constantly changing, which helps HIV become resistant both to the immune system and to drugs that are used to treat it. As a result, HIV infections must always be treated with a combination of drugs, so that if a virus arises that is resistant to one drug, it is most likely still susceptible to the other drugs in the treatment regimen... .

Thus, the answer is ’maybe.’

 

[Jesse2233]

My theory on tenofovir and other antiretrovirals is that their effectiveness in some cases of ME is not due to their activity against a certain virus. Rather it may be broadly acting against several different re-activated strains (varying from patient to patient), and that by inhibiting their reproduction the immune system is better able to re-establish a balanced state.

Whether or not an individual is helped is based on their unique immunological makeup, existence of other co-morbidities, and prevalence of viruses that will respond to ARVs

Of course this is just my best guess

 

[Stretched]

Finally, my observation is (ref #321):

The name 'antiretroviral' really means a drug that is used to fight any retrovirus, or RNA virus that inserts a DNA copy of its genetic material into a host cell's genome. However, nowadays, the term 'antiretroviral drugs' refers specifically to drugs that are used to treat HIV, since it is such an important retroviral disease.

As we discuss the various different drugs, we will see where they act in the replication cycle of the virus. It's not so important to remember all of the names of the drugs that are mentioned here. The most important thing is to learn the different strategies that can be used to block HIV infection... .

 

[Stretched]

...
Whether or not an individual is helped is based on their unique immunological makeup, existence of other co-morbidities, and prevalence of viruses that will respond to ARVs

Of course this is just my best guess

I’m rather in agreement with your premise, albeit
despite my long reply.

BTW, since this is public info, in my own condition HIV, HHV6 have been ruled out.
I’m 100% PWC - whatever that is

 

[fingers2022]

I developed ME after Hepatitis B vaccines. I was diagnosed with ME by a doctor at a clinic specialising in ME.

Following the ME diagnosis I had a muscle biopsy last year, which confirmed Macrophagic Myofasciitis (MMF). This is caused by aluminium hydroxide in the vaccine. Research in France has concluded that patients with MMF develop ME. So I'm 100% sure in my diagnosis.

My understanding from research papers is that some people with MMF develop autoimmunity, but not all. MMF results in a constant activation of the immune system due to the persistence of the vaccine adjuvant, and I think this leads to the ME and resulting symptoms in patients with MMF.

My symptoms are chronic fatigue, muscle pain & weakness, cognitive impairment. My symptoms worsen with physical and mental exertion (PEM), with a delayed worsening.
I have to rest for about 20-22 hours a day to minimise pain and fatigue. Simple tasks can hit me hard later. I use a wheelchair frequently when out of the house.

Really sorry that you have had this experience. We do appreciate your sharing information so that we can all learn.
It's striking that we all have different histories, yet end up with a ME diagnosis. The result is similar, the causes are different, but possibly have similarities, or at least commonality of immune system factors.
Personally, my ME is characterised as you describe EXCEPT I get no muscle pain (some weakness and nerve symptoms but not severe), and no cognitive impairment.
The relevance to this thread could be that you and I might have different conditions (different causes, some common, but some different symptoms), therefore the fact that Tenofovir didn't stop you developing 'ME', could be a red herring in terms of it's efficacy in treating (some) 'ME'.
Complicated this innit?

 

[fingers2022]

My theory on tenofovir and other antiretrovirals is that their effectiveness in some cases of ME is not due to their activity against a certain virus. Rather it may be broadly acting against several different re-activated strains (varying from patient to patient), and that by inhibiting their reproduction the immune system is better able to re-establish a balanced state.

Whether or not an individual is helped is based on their unique immunological makeup, existence of other co-morbidities, and prevalence of viruses that will respond to ARVs

Of course this is just my best guess

...and what Jesse said

 

[Stretched]

Follow up: fwiw, As it turns out I’m aborting the use of ‘Viraday’ (generic for Atripla; see above) as a trial after only a month of half doses. The side effects became overwhelming to the point of not being worth the risk to determine if a good ARV combo pill for Tenofovir. (I can’t imagine anyone dealing with the equivalent of a major hangover with doubled+ brain fog and increased systemic pain for any long period of time!)

I may try Tenofovir as a single ingredient or with Raltegravir but not continue if they yield similar severe side effects during a month’s trial of much more than just adjustment unpleasantness. The above bordered on an allergic reaction - vs push through.

Anyone else have similar reaction to trial of ARVs?

 

[patient.journey]

Follow up: fwiw, As it turns out I’m aborting the use of ‘Viraday’ (generic for Atripla; see above) as a trial after only a month of half doses. The side effects became overwhelming to the point of not being worth the risk to determine if a good ARV combo pill for Tenofovir. (I can’t imagine anyone dealing with the equivalent of a major hangover with doubled+ brain fog and increased systemic pain for any long period of time!)

I may try Tenofovir as a single ingredient or with Raltegravir but not continue if they yield similar severe side effects during a month’s trial of much more than just adjustment unpleasantness. The above bordered on an allergic reaction - vs push through.

Anyone else have similar reaction to trial of ARVs?

when i was searching for ARV i found that Viraday have a lot of issue , a lot of patients could not hanlde it

truavdu and raltegravir doesnt have the same
side effects

 

[Stretched]

when i was searching for ARV i found that Viraday have a lot of issue , a lot of patients could not hanlde it

truavdu and raltegravir doesnt have the same
side effects

Thanks. I’ll check these out. The other was a $350 mistake

 

[Keela Too]

I have heard of some people taking bad reactions to Tenofovir/Viread. Not everybody seems to be able to tolerate the drug.

 

[Jesse2233]

Any other tenofovir users around?

 

[patient.journey]

My first week on truvadu !

Feeling weird + I wake up with flu like symptoms which resolve in couple of hours by it self + a lot of bathroom visiting !

I have some kidney issues + gut big problems and am taking it on my own so I hope to reach 3 months trial with no major side effects

I will monitor my CBC, kidney and liver functions every 2 weeks to make sure I won't regret this trial with any persistent damage

 

[Hip]

Feeling weird + I wake up with flu like symptoms which resolve in couple of hours by it self + a lot of bathroom visiting !

Some ME/CFS patients taking tenofovir say that the start-up side effects can be avoided if begin with lower doses, and slowly work up to higher doses.

 

[patient.journey]

Some ME/CFS patients taking tenofovir say that the start-up side effects can be avoided if begin with lower doses, and slowly work up to higher doses.

Truvadu comes with one dosage , I will see how it will go and might add isentress to it if nothing obvious changed until the 6th week

 

[Hip]

Truvadu comes with one dosage ,

You can cut tablets in half or quarters if you want to use a lower dose.

Dr Weir reports that signs of recovery in ME/CFS patients only appeared after 3 or 4 months on tenofovir, so it maybe some while before you see benefits.

 

[mrmichaelfreedmen]

Any other tenofovir users around?

@Jesse2233 what's your IV make up? IVC is virucidal at a certain dose.

 

[mars2014]

Truvadu comes with one dosage , I will see how it will go and might add isentress to it if nothing obvious changed until the 6th week

Hi Omar
I have start to take TAF and DTG two weeks ago,the first day I take have the same flu like symptoms ,then second day i had become very clear mind (my brain fog is serious before),and feeling some energy coming back. afterward this ten days I feel quite well.but start from yesterday my serious brain fog come back again.this two day I feeling not so well.
Will update u for my upcoming feeling!
sorry for my English is not so good!
Hope we can have some improvements in the coming future!

 

[patient.journey]

Hi Omar
I have start to take TAF and DTG two weeks ago,the first day I take have the same flu like symptoms ,then second day i had become very clear mind (my brain fog is serious before),and feeling some energy coming back. afterward this ten days I feel quite well.but start from yesterday my serious brain fog come back again.this two day I feeling not so well.
Will update u for my upcoming feeling!
sorry for my English is not so good!
Hope we can have some improvements in the coming future!

DTG Is Dolutegravir ?

Do you know any one who did try this combination before ?

Am having severe flu for the first time in couple of years and for the first time in 7 years I got fever !

It's between 37.6-38 while I never had any fever more than 37.1 since the first month of this nightmare

I don't have brain fogs but I have nausea and much peeing but over all I feel gd with the flu symptoms

A lot of the other symptoms did disappear with the flu but not all

I will go under my trial for 3 months and might add Raltegravir soon

Lots keep each other's updated

Best wishes

 

[fingers2022]

Any other tenofovir users around?

Well, no, as I've been here before.
Anecdotal, but I can't believe what I am achieving...and I'm feeling bloody good (not perfect, but I'll settle for it).
I would recommend to try it. Side effects not bad...last nights dreams were way better than Netflix.
What's not to like/try?
Aldous Huxley would be proud of us.