Tenofovir some success

[Strike me lucky]

Dr Weir having success with tenofovir.

https://healthunlocked.com/meandcfssupport/posts/132802246/could-the-end-be-in-sight

 

[IrisRV]

@Strike me lucky
I'm not sure if Dr Weir wants this out in social media just yet. The GMC could go after him they way they've gone after other doctors who give treatments other than CBT and GET to ME patients. I suggest you take this thread down for now until someone checks with Weir. I don't want to put him at risk.

 

[Strike me lucky]

I just came across it googling and found it on another site . If we do or dont post it here the cats out of the bag. At the moment its hear say as nothing has come from dr weir that i know of?

 

[Who Me?]

Do I remember wrong or was something said at that Scottish conference?

 

[Strike me lucky]

"Minx, post: 10638, member: 68"]Do I remember wrong or was something said at that Scottish conference?[/QUOTE]
Conference ? Tell us more?

 

[Who Me?]

@Strike me lucky it was that feed from Dr coyne from a few days ago. There were pics of Dr Weir and signs about GET and how bad it was. I thought arvs were mentioned there but maybe I had just heard he was going to use them. My brain is trash from sleep deprivation.

 

[Strike me lucky]

@Strike me lucky it was that feed from Dr coyne from a few days ago. There were pics of Dr Weir and signs about GET and how bad it was. I thought arvs were mentioned there but maybe I had just heard he was going to use them. My brain is trash from sleep deprivation.

Who knows i guess. Its good to think RV research in cfs is still going on and not shut down. I have heard other european countries are still researching this. Speculation but i wonder if its anything to do with herv RVs that wpi and kdm have mentioned in the past.

 

[Who Me?]

We'll find out eventually. We just have to wait for someone to say something. I wonder if someone is doing some study we don't know about?

 

[IrisRV]

I just came across it googling and found it on another site . If we do or dont post it here the cats out of the bag. At the moment its hear say as nothing has come from dr weir that i know of?

I don't know. As you say, the cat is apparently out of the bag. I can only hope he doesn't get in trouble with the medical gestapo, I mean authorities, because of patients leaking info. Not a good way to treat doctors who are actually helping us.

 

[Who Me?]

Per a thread in PR DR weir does not want this posted. Please link where tiur original saw it. They want this gone.

"The link on health rising links directly to this page and I think it's ok now?

This thread still has some people quoting your original message so I've tagged those posts to the mods. "

Whoever the info is out there. I just googled tenofovir CFS weir and this came up:

"The Dr does not want the information spread online because taking the drugs without close medical supervision is extremely risky and there are potential side effects.

• Dr Weir appears after about 4 mins. Some discuss him here:
  
  forums.moneysavingexpert.co...
  
  I met him in a hotel in Belfast as he flies to Ireland to do clinics here. I had seen him once before costing £150 for the assessment, diagnosis and plan of action, this time it was £50 for 1/2 hr consult and money well spent, even if the drugs don't work!
  
  I have his email address so can PM it to anyone who wants it, don't know if posting it here would be fair. I would imagine you would have to see him as he does some physical checks but he has then answered questions for me on-line.
  
  
• o kind as to PM me, and see if he can be of any help even though I can't physically consult with him. I really hope the Tenofovir shows promise for you, do keep us informed!
  ReplyLike (1)
  
  
• what Dr Weir is saying), and the drug Tenofovir should work. He's had some success with it so there is a chance it wont work but again a chance it will.
• 
  2) He hasn't mentioned me stopping any other drugs and when I read up there are some interactions but they seem to be potentiating of other antiretrovirals. So you should have no bother with your medication, obviously a Dr will clarify all

https://healthunlocked.com/meandcfssupport/posts/132802246/could-the-end-be-in-sight

 

[Cort]

I know somebody who is VERY ill who did great on an HIV antiretroviral - I don't know if it was Tenofovir or not - but she said it was the best thing she ever did. She later had to stop it because she had a bad reaction to it.

I wonder if Tenofovir has some properties that make work for other than retroviruses. I think that was what they were thinking about this one person's success (???)

 

[Who Me?]

I really think this is an avenue we need to explore. How did she do after stopping it?

 

[Strike me lucky]

It could be another unknown RV or an endogenous retroviruses .
I get the impression from a few other things ive read that one only needs it for a certain time frame. Ive heard people mention that it seems like a slow replicating virus, so makes sense that after say 12 months treatment that people would feel well for a long period of time due to the slow replication or if RV load is reduced to a level tjat the immune system can handle it???

All speculation but something has to be behind these other viruses reactivating in cfs but not in normal people with these viruses .

tenofovir seems to be a relatively safe drug and if used under the supervision of a dr, i think the risk to benefit is worth it.

 

[Cort]

I really think this is an avenue we need to explore. How did she do after stopping it?

I think she went on a whole basketfull of drugs including other antivirals and immune modulating drugs and I think they helped.

 

[Who Me?]

I think she went on a whole basketfull of drugs including other antivirals and immune modulating drugs and I think they helped.

Haha! basketful is right! My place looks like a cross between a pharmacy and supplement warehouse!

 

[Tareq]

Dr Weir having success with tenofovir.

https://healthunlocked.com/meandcfssupport/posts/132802246/could-the-end-be-in-sight

I can easily get this in the UK cheaply from a safe and verified online pharmacy. I may give it ago... do you know if there are serious risks? Or if it can make some people with CFS just worse? I am 80% housebound and quite desperate (like most people are with this illness!)

 

[Strike me lucky]

I can easily get this in the UK cheaply from a safe and verified online pharmacy. I may give it ago... do you know if there are serious risks? Or if it can make some people with CFS just worse? I am 80% housebound and quite desperate (like most people are with this illness!)

Trial and error is all we have. Some take it for a few days and start to feel bad then just stop until better again and then start viread again etc. Eventually one can take it for longer without issues.

But for some including me i didnt have any negative effects. I take 2 days off it a week to reduce any potential side effects and to safe $$.

 

[Tareq]

Trial and error is all we have. Some take it for a few days and start to feel bad then just stop until better again and then start viread again etc. Eventually one can take it for longer without issues.

But for some including me i didnt have any negative effects. I take 2 days off it a week to reduce any potential side effects and to safe $$.

Thanks! Have you noticed any benefits in energy etc Or is it too early to tell? I think I'm going to give it a go

 

[Strike me lucky]

Thanks! Have you noticed any benefits in energy etc Or is it too early to tell? I think I'm going to give it a go

Im definitely feeling better and more active. Occassional pem but a day of rest and im fine. If 10 is normal, im about an 8 or a 9. Sleep still needs medicating but im sleeping more soundly. Im not totally symptom free but symptoms are easy to deal with.

Im trying to recall how long i have been on tenofovir. I initially did 3 months and improved but wasnt sure if it was arvs or an antibiotic combo i was taking or a few other things i was trialling. But stop tenofovir after 3 months and my condition went down hill. I was off maybe 4 or 5 months and then restarted tenofovir again. I think ive been back on it for about 7 months and improvement seem to happen much quicker the second time around.

Its a subtle improvement over a few months. I cant just say it increases energy etc. Its just a lessoning on most cfsme symptoms, which does mean more energy but its a more wide spread effect.

90% of my blood work if shown to a dr they would say oh it looks like you have a virus, you should be ok in a week or two. That 15yrs this year. I fit into the viral sub group with ebv/cmv, varicella virus and they were also cause of my cfs onset. 95% of my tests show low neutrophils and my total lymphocytes are high if not on antiviral/famvir. T cell sub sets always high but its been awhile since i have had that tested. I also tested very low in natural killer cell function testing.

I just mention the above to try and give people an idea of what i personally was dealing with. Many cfsers are dealing with different infections or combination of infections. Theres no way to know who will respond to tenofovir other then trial and error. I really cant say if theres an underlying retrovirus or if tenofovir modulates the immune system as some research has shown. But if i was going to make a bet it would be we have some unknown retrovirus or maybe it is known by the medical authorities but they have chosen to look the other way.

My opinion is its worth a shot but give it a few months. I will say i had a similar experience with antivirals but couldnt sustain the full effects for longer then 12 months but was better then originally was. So i continue with avs as well as arvs and occassional abx for sinus infections, which have also eased of late.

 

[Tareq]

Im definitely feeling better and more active. Occassional pem but a day of rest and im fine. If 10 is normal, im about an 8 or a 9. Sleep still needs medicating but im sleeping more soundly. Im not totally symptom free but symptoms are easy to deal with.

Im trying to recall how long i have been on tenofovir. I initially did 3 months and improved but wasnt sure if it was arvs or an antibiotic combo i was taking or a few other things i was trialling. But stop tenofovir after 3 months and my condition went down hill. I was off maybe 4 or 5 months and then restarted tenofovir again. I think ive been back on it for about 7 months and improvement seem to happen much quicker the second time around.

Its a subtle improvement over a few months. I cant just say it increases energy etc. Its just a lessoning on most cfsme symptoms, which does mean more energy but its a more wide spread effect.

90% of my blood work if shown to a dr they would say oh it looks like you have a virus, you should be ok in a week or two. That 15yrs this year. I fit into the viral sub group with ebv/cmv, varicella virus and they were also cause of my cfs onset. 95% of my tests show low neutrophils and my total lymphocytes are high if not on antiviral/famvir. T cell sub sets always high but its been awhile since i have had that tested. I also tested very low in natural killer cell function testing.

I just mention the above to try and give people an idea of what i personally was dealing with. Many cfsers are dealing with different infections or combination of infections. Theres no way to know who will respond to tenofovir other then trial and error. I really cant say if theres an underlying retrovirus or if tenofovir modulates the immune system as some research has shown. But if i was going to make a bet it would be we have some unknown retrovirus or maybe it is known by the medical authorities but they have chosen to look the other way.

My opinion is its worth a shot but give it a few months. I will say i had a similar experience with antivirals but couldnt sustain the full effects for longer then 12 months but was better then originally was. So i continue with avs as well as arvs and occassional abx for sinus infections, which have also eased of late.

Thanks a lot for all the info it makes sense and so happy you found something to help! I feel I am also the viral subtype as I was tested positive for the active form of CMV 2 months after the onset of my CFS. I had blood work to show my antibodies to CMV is still very high recently, but not "active." Sorry can i ask around what percentage of well you were initially before starting the tenofovir?