Tenofovir some success

[Strike me lucky]

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?

Id be skeptical that high cmv wasnt active. If you have high or low neutrophils or lymphocytes or white blood cell counts id say its quite possible cmv is active.

Maybe worth trying antiviral for it???

 

[ariane lamo]

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.

Ofcourse its a Retrovirus i can Asure you this 100% .
I don't have scientific proof other than what we all know from the history of me cfs, Dr de Freitas , Mikovits, Rusccetti & quiet few others with a vast experiance in me/cfs from the early days of incline village they all believe thesame thing. i have this and many other facts, i don't need NIH or CDC to tell me this is a Retrovirus, it will be better cause they can make the arvs treatment aveilable for us easier and we can measure viral load etc.. but 100% sure its Retroviral infectious disease .
why don't you try Insetress to?? its relatively safe and have proof to have a good action on mlv viruses but also agains herpes viruses???

 

[garnet10]

Id be skeptical that high cmv wasnt active. If you have high or low neutrophils or lymphocytes or white blood cell counts id say its quite possible cmv is active.

Maybe worth trying antiviral for it???

@Strike me lucky how are you doing on the anti-retroviral?

 

[Strike me lucky]

@Strike me lucky how are you doing on the anti-retroviral?

Holding my 8 or 9 out of 10. Testosterone replacement therapy has helped with exercise recovery and general wellbeing, it has definitely helped but hard to quantify but i cant say im a 10 out of 10 or if i ever will??

 

[Zapped]

I just ordered my first ARV combo pill (DIY for CFS/ME) after a lot of equivocation, then detailed research, all of which highlights cautions relative to protocols using ARV's... .

If anyone else is thinking about going this route you might find this info helpful. Try a Google search for 'How ARV'S Work.' There's a ton of pertinent background info from credible sources. Multiple articles explain the arcane language in patient friendly style.

Because of the explanation as to how the ARV's work, most authoritative sources recommended the use of two complementary types at once. Specifically, "The WHO recommends the use of two NRTIs with one NNRTI in ART-naïve patients who meet the criteria for treatment. Recommended first-line HAART regimens are: 1. Zidovudine plus lamivudine, plus either efavirenz or nevirapine; or,
2. Tenofovir plus either lamivudine or emtricitabine, plus either efavirenz or nevirapine."
(Fwiw, I went with #2. Delivery is 2 weeks away… .)

 

[garnet10]

I just ordered my first ARV combo pill (DIY for CFS/ME) after a lot of equivocation, then detailed research, all of which highlights cautions relative to protocols using ARV's... .

If anyone else is thinking about going this route you might find this info helpful. Try a Google search for 'How ARV'S Work.' There's a ton of pertinent background info from credible sources. Multiple articles explain the arcane language in patient friendly style.

Because of the explanation as to how the ARV's work, most authoritative sources recommended the use of two complementary types at once. Specifically, "The WHO recommends the use of two NRTIs with one NNRTI in ART-naïve patients who meet the criteria for treatment. Recommended first-line HAART regimens are: 1. Zidovudine plus lamivudine, plus either efavirenz or nevirapine; or, 2. Tenofovir plus either lamivudine or emtricitabine, plus either efavirenz or nevirapine.
(Fwiw, I went with #2. Delivery is 2 weeks away… .)

Zapped, I hope you see some improvement. I have conversed briefly with 2 people who feel they have "recovered" or are "in remission" on ARV's. Both took tenofovir (Viread) at 245 or 300 mg once a day and raltegravir (Isentress) 400 mg twice a day. Both mentioned they do not take them daily but had to figure out how many days on and off. Others seem to be doing better on just tenofovir.

I have tried practically everything ever researched/suggested for CFS over the past 15 years. Since I have been declining over the past 2 weeks after enjoying a couple of weeks of improvement, I'm starting to feel desperate enough to try ARV's.

This week I struggled to get through my abridged day of work, and have been the subject of complaint from an unpleasant co-worker, such that my administrator has suggested I consider Family Medical Leave. I'm considering starting ARV's during this 12 week period, so that if I experience IRIS reaction I won't miss work, and perhaps would see improvement during that time. (although Hustler stated it took about 4 years before he saw improvement).

I hope this goes well for you, and that you continue to update us. If I start ARV's I wiill keep this forum updated as well.

 

[Zapped]

Zapped, I hope you see some improvement. I have conversed briefly with 2 people who feel they have "recovered" or are "in remission" on ARV's. I'm considering starting ARV's during this 12 week period, so that if I experience IRIS reaction I won't miss work, and perhaps would see improvement during that time. (although Hustler stated it took about 4 years before he saw improvement).

I hope this goes well for you, and that you continue to update us. If I start ARV's I wiill keep this forum updated as well.

Thanks, and same for you. BTW, I did read Hustler's feedback, here which motivated
me to move forward. I hope you check out some of the patient directed articles, re earlier
post. They're especially helpful if you're doing it yourself, i.e. w/o a doc.
(We'll both need regular lab tests to catch any problems quickly.). Good luck, huh

 

[garnet10]

Zapped, how have you been doing on the ARV’s so far?

 

[Zapped]

Zapped, how have you been doing on the ARV’s so far?

Thanks for asking. I hate to report it but I got worse in a hurry on Viriday and stopped
taking them after 30 days of half dosage - Sick, not just trial discomfort.

As posted elsewhere, someone pointed out that the second ingredient in that compound
is particularly onerous and made many others worse as well. I may try ARV’s again but with Tenofovir plus some other ingredient... . Regrettably, I bought a 90 day supply=(

Did you try them, and if so how did you fare?

BTW, I did have high CMV numbers before starting. I don’t know now.

 

[garnet10]

Thanks for asking. I hate to report it but I got worse in a hurry on Viriday and stopped
taking them after 30 days of half dosage - Sick, not just trial discomfort.

As posted elsewhere, someone pointed out that the second ingredient in that compound
is particularly onerous and made many others worse as well. I may try ARV’s again but with Tenofovir plus some other ingredient... . Regrettably, I bought a 90 day supply=(

Did you try them, and if so how did you fare?

BTW, I did have high CMV numbers before starting. I don’t know now.

 

[garnet10]

I haven’t tried them yet. I’m waiting until I can no longer work anymore so I have nothing to lose, or get desperate enough to give it a try.

Right now I can drag myself to an abridged work schedule and make it through the day.

Sorry to hear what happened. When I finally do try them I will post here.

 

[xcell]

Thanks for asking. I hate to report it but I got worse in a hurry on Viriday and stopped
taking them after 30 days of half dosage - Sick, not just trial discomfort.

As posted elsewhere, someone pointed out that the second ingredient in that compound
is particularly onerous and made many others worse as well. I may try ARV’s again but with Tenofovir plus some other ingredient... . Regrettably, I bought a 90 day supply=(

Did you try them, and if so how did you fare?

Hello, how severe are you?
Here you can read about slow increase starting with 1/8 tablet (!): http://meversuscfs.blogspot.com/2018/06/arztanfragen-mein-therapieregime-fur.html
In this treatment regime Cistus Incanus instead of Raltegravir is used.

 

[Farmgirl]

I just ordered my first ARV combo pill (DIY for CFS/ME) after a lot of equivocation, then detailed research, all of which highlights cautions relative to protocols using ARV's... .

If anyone else is thinking about going this route you might find this info helpful. Try a Google search for 'How ARV'S Work.' There's a ton of pertinent background info from credible sources. Multiple articles explain the arcane language in patient friendly style.

Because of the explanation as to how the ARV's work, most authoritative sources recommended the use of two complementary types at once. Specifically, "The WHO recommends the use of two NRTIs with one NNRTI in ART-naïve patients who meet the criteria for treatment. Recommended first-line HAART regimens are: 1. Zidovudine plus lamivudine, plus either efavirenz or nevirapine; or,
2. Tenofovir plus either lamivudine or emtricitabine, plus either efavirenz or nevirapine."
(Fwiw, I went with #2. Delivery is 2 weeks away… .)

I am pretty bad. Almost died last year. Does one need a doctor's script for these meds?

 

[Zapped]

I am pretty bad. Almost died last year. Does one need a doctor's script for these meds?

Yes, prescription required. However, there’s always the online pharmacies (search here or Phoenixrising.com for ideas). IMO, antivirals and ARVs aren’t really relevant for CFS. In hindsight, I think ME/CFS is immune mediated, not viral. That’s controversial but for me it’s true (see above posts) and I’ve had this stuff ~30 years. These things can make you feel like hell. I felt worse on them than even during a crash - awful! Save yourself the grief unless your doctor insists you try them.

 

[Farmgirl]

Yes, prescription required. However, there’s always the online pharmacies (search here or Phoenixrising.com for ideas). IMO, antivirals and ARVs aren’t really relevant for CFS. In hindsight, I think ME/CFS is immune mediated, not viral. That’s controversial but for me it’s true (see above posts) and I’ve had this stuff ~30 years. These things can make you feel like hell. I felt worse on them than even during a crash - awful! Save yourself the grief unless your doctor insists you try them.

@Zapped. Thanks for the word of caution.

I have also been sick that long, if not since I was 5 and I am now 57.

You are not alone, Zapped!

I, BTW, curse the day I decided to clean some brush out of our back property and ended up with a tiny tick on me that I did not notice for 4 days. That has been 13 years so I am in Lyme treatment as well as treatment for the HHV-6 managerie of stealth buggies running around untamed within my body.

Thanks for the heads up and sorry you went through that extra tough time!!!

Have you tried Mestinon? I heard from a doctor @ Brigham's Women in Boston that some ME patients are having success with that.

Take care, best you can! FG

 

[Zapped]

@Farmgirl
“Have you tried Mestinon? I heard from a doctor @ Brigham's Women in Boston that some ME patients are having success “

Not familiar with it. What’s the application? Thanks.

 

[Farmgirl]

@Farmgirl
“Have you tried Mestinon? I heard from a doctor @ Brigham's Women in Boston that some ME patients are having success “

Not familiar with it. What’s the application? Thanks.

@Zapped
Hi, it is a med they use for Myasthenia Gravis, which is also an immune system issue.

Dr. David Systrom was interviewed on ME/CFS alert on YouTube from July, 2018 discusses the use of Mestinon, plus I have heard it other places.

He said they are having some good results using it on ME patients.

I would give you the link but I am technologically challenged.

 

[Vaporization]

I would give you the link but I am technologically challenged.

Here it is.

 

[Farmgirl]

Here it is.

You're a real gem.

 

[Vaporization]

You're a real gem.

That is so sweet of you. I'm glad I could help.