Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To register, simply click the Register button at the top right.
All I have to say is....f*** me!!!!(Sorry with ongoing forum upheaval I have now deleted most of my post here. I will say however that Tenofovir helped me.)
Earlier this year I wrote a blogpost about my improvements - It was in the context of NOT needing any form of graded exercise therapy in order to take up my new found energy levels:
I hope that helps a bit.
Ahem, does that equate to fuck all risk then compared with possible benefits?
Anecdotal...fucking useful...haha sounds like a RHCP number.
I don't really have much specific information on this. I know of a group of people in California (12-15 people) that are all taking the above doses of those two drugs. They are people that are simply fed up with the lack of progress, sought advice from some research doc, and someone in the group I believe has good and reasonably affordable access to
Heapsreal what kind of benefits have you noticed from tenofovir?
Folk take all kinds of meds without questioning risk/side-effects. Often when they'd be better off looking at lifestyle changes if that's possible for them. I feel that the risk of ARV's is being a tad over-egged.I don't think anyone here is taking the approach of "fuck all risk". In fact taking any medication is a risk versus reward judgement call. Currently most promising looking drugs for CFS/ME such as Rituximab have serious and potentially lethal side effects. Still, it may well be worth taking them for an individual.
What else other than anecdotal experiences would you expect to find here on a drug that hasn't been clinically tested for CFS/ME?
Can you expand on that?I am not ruling out the possibility of a retrovirus infection, given Prof Lipkin's initial findings of retroviral genetic signatures in 85% of ME/CFS patients.
We are all different, respond differently and have different levels of (in)tolerance to things.
Sure, we can go on the experience of others...for example most healthy people tolerate alcohol, and this has been tested for millennia. Some react badly to it...caffeine similar. These ARV's have been well tested for 30 years or so, less toxic now, fewer and less severe side effects. I 'believe' that the only way we will know is to each individually try them. I've been doing so for just over 3 months now. Honestly, some improvement I think but not massive - I need to come off at some point to test that, as we do forget how bad we were as we recover. I've been very active whilst on them, and I drink tons of water and have a healthy diet - I think these things are likely to be protective, although we ME sufferers do of course need to balance the activity and need to rest lots.
Here's a top tip from a layman: establish your resting heart rate first thing in the morning, say 10 minutes after waking, but before getting out of bed (use a device such as a blood pressure monitor or a HRM). For a week or two, see how your RHR varies - it will vary depending on your recovery status from previous day, whether you have an active infection, psychological stress etc. It gets lower as we get aerobically fitter, i.e. our heart muscle gets stronger therefore stroke volume increases and heart needs to beat less often at rest to get the same blood volume around. Of course we don't get fitter unless we physically stress our system then allow it to adapt by resting.
Then, if you feel well enough, and in consultation with doc, try ARVs as directed. Monitor your RHR. Mine has been consistently lower on ARVs - a good sign I think, and objective too. RHR is a very good indicator of cardiovascular disease risk (evidence-based ). If the ARV's are making you worse, my hunch (no research evidence, but discuss with doc) is that this could be reflected by an increased RHR.
I'm surprised that there isn't correlation. I find that I can tell what my heart rate is before I monitor it. It would be interesting for you to keep a log say for 2 weeks - RHR vs 'perceived wellness' (1-10), record the pw first! Then tell me again no correlation ;-)Thanks for this fingers. I hope you get more improvement. My heart rate is quite variable, but doesn't seem to correlate with how I'll I'm feeling.
Nice one.I have added a poll as others are reporting benefit from tenofovir in this thread
I feel that the risk of ARV's is being a tad over-egged.
Can you expand on that?
Is a retroviral genetic signature anything unusual?
My (weak/simple) understanding is that RVs have played a part in human evolution, so RV genetic signatures might be common...?
They also found retroviruses in 85% of the sample pools. However, Lipkin expressed caution:
“It is very difficult at this point to know whether or not this is clinically significant. And given the previous experience with retroviruses in Chronic Fatigue, I am going to be very clear in telling you – although I am reporting this at present – in Professor Montoya’s samples neither he nor we have concluded that there is a relationship to disease …if I were to place bets and speculate, I would say that this is not going to pan out.”
I have now been off Viread for almost a year, and with a few ups and downs, I have pretty much held the gains I achieved during that treatment year.