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

Has tenofovir benefited you?

  • Yes - I am in remission

    Votes: 1 0.9%
  • Yes - Significant improvement

    Votes: 4 3.7%
  • Yes - Moderate improvement

    Votes: 2 1.8%
  • It has not done anything good or bad

    Votes: 8 7.3%
  • No - Moderate worsening

    Votes: 3 2.8%
  • No - Substantial worsening

    Votes: 1 0.9%
  • I have not tried tonofovir

    Votes: 90 82.6%

  • Total voters
    109

patient.journey

Senior Member
Messages
443
Am ordering truvadu + isentress

It's been 7 years of pain with an infection that was started with flu like symptoms and I did try every thing else , now it's the time I nook this door !

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 !

Rituximab Is worse than truvadu and people are welling to take so sometimes we need to stop thinking of side effects for a while and search for the quality of life !

There are 3-4 people who have CFS/ME and think they are cured or at least not having any more symptoms while they are under the treatment


Regards
 

perrier

Senior Member
Messages
1,254
Its hard to quantify. If im feeling run down i can recover with a good nights sleep, so pem is greatly reduced compared to in the past. Function more consistently at an 8 or 9 out of 10. I wouldnt say recovered but i have stopped them a few times and progressively gotten worse and improved once back on them.

Ive heard 50% of cfsers improve on arvs and 50% dont. Its possible cfs is several diseases in one.
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.
 

Hip

Senior Member
Messages
17,858
And my point about your point about lab-created XMRV?

I am not too clear about what point you were making. XMRV was accidentally created in the mid-1990s, so just on that fact alone, we know that Dr Judy Mikovits's original suggestion that XMRV is the cause of ME/CFS cannot be correct. Whether there is another retrovirus lurking about in ME/CFS patients we will have to wait and see.
 
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Hip

Senior Member
Messages
17,858
She has been quite vocal about the fact that she, hasn't, suggested XMRV as the cause of ME/CFS.

When you find a pathogen more prevalent in patients with a given disease, in science you say that that the pathogen is "associated" or "linked" to that disease. But as we all know, association does not prove causation, and more research work has to be done if you want to prove that there is a actual causal connection between the pathogen and the disease.

You have the same issue with enterovirus, which is found in 82% of all ME/CFS patients in Dr Chia's studies, and only in 20% of the healthy controls. So there is clearcut association of enterovirus and ME/CFS. But this association does not on its own prove that enterovirus can cause ME/CFS; you need to do more work to establish causation. Nevertheless, researchers and doctors may work on the assumption that the virus does cause the disease, and give patients antivirals in the hope that if the virus is causing the disease, then antiviral treatment will lead to improved symptoms.


It's sad to see in that video Dr Mikovits indulge in the sort of mumbo jumbo conspiracy theories that normally only halfwits entertain. But such are the frailties of the human condition.
 
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Hip

Senior Member
Messages
17,858
Don't forget that Judy Mikovits has long suffered from an ME/CFS-like condition herself, and as we all know, brain fog and some of the neuropsychological symptoms that afflict ME/CFS patients can cloud judgement, and also make us a bit suspicious or paranoid at times, so we may fall prey to conspiracy theories. It does not mean we are halfwits, it's just that we are neurologically challenged.
 

patient.journey

Senior Member
Messages
443
I know that Judy is not perfect !

I stopped talking to her while ago because the lack of the information she give or she really have !

Am in retroviruses theory more than anything , Is entrovirsues or herpes viruses are nothing more than co infections such as candida or bad bacteria growth in any part of the body !

When lipkin said that there was a trace for retrovirus in more than 80% of the sample but "lots not look at it and go searching for bio markers !! "

Which retro virus where there as this group have limited known viruses which been found in human blood ?

CFS/ME patients are not the same and we all know that , some have autoimmune illness and others got it after viral infection ( it might be that some developed autoimmune and they are in the first group) , those which have it after the viral infection and still sick and have a some issues with their families as CFS like symptoms or other not well recognized multiple sickness have to look at this illness with an open eye .
 

patient.journey

Senior Member
Messages
443
Don't forget that Judy Mikovits has long suffered from an ME/CFS-like condition herself, and as we all know, brain fog and some of the neuropsychological symptoms that afflict ME/CFS patients can cloud judgement, and also make us a bit suspicious or paranoid at times, so we may fall prey to conspiracy theories. It does not mean we are halfwits, it's just that we are neurologically challenged.


Sorry hip but that not good to say !

If patients of us start saying that to each other's when they have different opinions how would be the response from the people not suffering , not knowing what we are going through ?
 

Hip

Senior Member
Messages
17,858
@Omar88, I think we need to help each other out, because we are all vulnerable to making mistakes as a result of clouded thinking due to brain fog. I find I often misconstrue things because of brain fog.



I have never heard of that, please expound.

It's something she does not talk about much, but I remember reading this somewhere many years back. I am not sure if it is ME/CFS Judy has, or some other similar condition. But my impression is that her illness is the reason she often keeps in contact with other ME/CFS patients, because from her own symptoms, she has a personal understanding of the ME/CFS condition, and feels solidarity with ME/CFS patients.
 

patient.journey

Senior Member
Messages
443
@Omar88, I think we need to help each other out, because we are all vulnerable to making mistakes as a result of clouded thinking due to brain fog. I find I often misconstrue things because of brain fog.





It's something she does not talk about much, but I remember reading this somewhere many years back. I am not sure if it is ME/CFS Judy has, or some other similar condition. But my impression is that her illness is the reason she often keeps in contact with other ME/CFS patients, because from her own symptoms, she has a personal understanding of the ME/CFS condition, and feels solidarity with ME/CFS patients.


Even if she did had it for a while as any one of us it doesn't stay + she doesn't look sick now !

And it's not about Judy , it's a lot of research of unknown retroviruses that been dismissed after we're linked to CFS or other autoimmune illness , its medical system failure + there is a side of something hidden !

With all this technology around , when a new infection start hitting people they can gene sequencing it in less than a month or a week and here we are still in the process of it might be or it might be not and they would still look to find sth !

It's been hard enough for us and the medical system is not helping us that why am going through this trial by my self starting ARV , if it does work I won't bother thinking why and how !

I would come and tell u guys that am well and this is how i took it and run to try catching what I missed of my life ,,,
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
@IThinkImTurningJapanese, the paper says those antiviral substances target influenzavirus, so not much use for ME/CFS viruses.

It doesn't explain everything, this substance is life changing, I take it every day.

It is difficult to find information on though, aside from "Blog" type post's on Traditional Chinese Medicine. That is the most authoritative research I have found so far.

Other info suggests it is a powerful Antiviral, Antibiotic, Anti-Tumor substance.

Edit: This shit will kill you if not used properly, it's a famous poison, Monkshood.
I get regular blood tests and processing of this substance is regulated.

Bushi2012.jpg
 
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Sandman00747

Senior Member
Messages
106
Location
United States, Kansas
Even if she did had it for a while as any one of us it doesn't stay + she doesn't look sick now !

And it's not about Judy , it's a lot of research of unknown retroviruses that been dismissed after we're linked to CFS or other autoimmune illness , its medical system failure + there is a side of something hidden !

With all this technology around , when a new infection start hitting people they can gene sequencing it in less than a month or a week and here we are still in the process of it might be or it might be not and they would still look to find sth !

It's been hard enough for us and the medical system is not helping us that why am going through this trial by my self starting ARV , if it does work I won't bother thinking why and how !

I would come and tell u guys that am well and this is how i took it and run to try catching what I missed of my life ,,,
Omar, just like us Dr. Mikovits suffers with this horrible malady and like most of us it comes and goes in waves. She is just as prone to clouded thinking as much as any one of us is. And, you're way too quick to dismiss enteroviruses in favor of RV's. An enteroviruses could well suppress an immune system enough for HERV's and whatnot to express themselves in lieu

of thinking the enterovirus is a secondary infection to an RV. There is a growing number of scientists that are worried that we let a monster out by creating the polio vaccine eliminating 2 or 3 enteroviruses but leaving at least 70 others to mutate and take up for the ones eliminated by the vaccines. This is as viable a theory as any right now. And the fact that no government will openly attack this problem even lends more credibility to this theory. But, it's just another

theory at this point and until someone has a definitive answer we all need to just keep on fighting with whatever we've got! Good luck with your experimental treatment. I know these drugs also hit enteroviruses to a certain degree. I do wish you great success!
 

patient.journey

Senior Member
Messages
443
Omar, just like us Dr. Mikovits suffers with this horrible malady and like most of us it comes and goes in waves. She is just as prone to clouded thinking as much as any one of us is. And, you're way too quick to dismiss enteroviruses in favor of RV's. An enteroviruses could well suppress an immune system enough for HERV's and whatnot to express themselves in lieu

of thinking the enterovirus is a secondary infection to an RV. There is a growing number of scientists that are worried that we let a monster out by creating the polio vaccine eliminating 2 or 3 enteroviruses but leaving at least 70 others to mutate and take up for the ones eliminated by the vaccines. This is as viable a theory as any right now. And the fact that no government will openly attack this problem even lends more credibility to this theory. But, it's just another

theory at this point and until someone has a definitive answer we all need to just keep on fighting with whatever we've got! Good luck with your experimental treatment. I know these drugs also hit enteroviruses to a certain degree. I do wish you great success!

That why I said it's two groups , some got hit of an infection and have autoimmune reaction and that could be from herpes or entrovirusis that activated HERV but doesn't happen fast as some people have and this group seems to be infectious!

Thanks for your wishes of good luck
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
@IThinkImTurningJapanese, you might want to start a new thread about the benefits you have experienced from aconite. It sounds interesting.

I have thought about that, however, if you are not in this part of the world, consuming this substance can be very risky. The U.S. advises against it, for good reason, it must be processed properly to be safe.

I brought this subject up here because I am curious about possible anti-retroviral properties of this medicine, or antiviral properties as I posted.

@Hustler's post's lead me to consider increasing my dosage to my Doctor's original recommendation. I had insisted on a reduction due to inflammatory reactions.

I've had significant improvements that I probably would not have experienced, yet, without @Hustler "stirring up" the issue.
 

mrmichaelfreedmen

Senior Member
Messages
156
Location
Australia
ha yes, the dreams...quite enjoying them, especially the raunchy ones! A kinda virtual reality huh?
I'm taking Tenofovir + Emtricitabine as single combo because that's what's available as PREP (HIV prophylactic). They are both the same class drugs...from memory reverse transcriptase inhibitors I think, address the same part of the replication cycle, maybe combined to reduce risk of resistance.

Yeah get the KF tests done - I don't think liver is so much at risk but check with pharmacist. Drink water! lots! Matcha green tea might be a good idea too - might protect both liver and kidney.

Hustler is suggesting Raltegravir and Kaletra with Tenofovir. I might add these in the new year.
I do think my recovery from physical activity is improved, and my PEM is reduced.
Anecdotal of course, but objectively my resting heart rate is down - was consistently above 50, now consistently below, down to 39 at one point, felt very good. This is low by most standards, part genetic, part training.
I'm a big fan of monitoring RHR and trying to get it down naturally, mainly with physical exercise if that is possible for you...might have to pay a price, that's individual choice, but better than type2 diabetes or CVD. I do appreciate that that is out of reach of many. Maybe ART could put it in reach of some?

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