Anyone try ARV's without success?

[garnet10]

I'm curious if there is anyone on this forum who has tried ARV's, but has had no improvement in symptoms.

I have tried many, many, many (did I say many?) various treatments over the years, except for UVBI, IV ozone, anti-parasite medication, growth hormone injections, nasal spray VIP, Ampligen, Rituximab, and ARV's.

I've heard from those who are trying ARV's with some success, but just wondering if anyone has tried them without success.

 

[Remy]

I'm curious if there is anyone on this forum who has tried ARV's, but has had no improvement in symptoms.

I have tried many, many, many (did I say many?) various treatments over the years, except for UVBI, IV ozone, anti-parasite medication, growth hormone injections, nasal spray VIP, Ampligen, Rituximab, and ARV's.

I've heard from those who are trying ARV's with some success, but just wondering if anyone has tried them without success.

I tried tenofovir for a very short time. It didn't agree with me but I would not hesitate to try a different one at some other time if I had a good reason to believe it would help.

 

[garnet10]

There is one retired infectious disease physician in the UK who reported "successful treatment of ME/CFS with antiretroviral" in his application for research funds from NIH:

"I have three patients with ME/CFS who recovered whilst being given this drug. Signs of recovery did not appear until the third/fourth month."

He did report that he "had to stop the tenofovir in 3 other patients in whom there was no beneficial response after 5 months." But there is at least one person on this forum who said it took 3-4 years before he saw benefit.

I'm not in the UK, but I wonder if there is anyone on this forum who is a patient of his who could share their experience?

 

[Hip]

I tried tenofovir for a very short time. It didn't agree with me but I would not hesitate to try a different one at some other time if I had a good reason to believe it would help.

A member of the PR forum told me that he met an (offline) group of ME/CFS patients in California who were taking tenofovir 245 mg and raltegravir 400 mg daily, and they claimed that many were in remission or much improved as a result.

But this group stressed the importance of building up slowly to these stated doses, which makes it easier to tolerate the drugs.

Because tenofovir causes a depletion of antioxidants (which can lead to mitochondrial toxicity in the kidneys), I wonder it this might be the basis of why ME/CFS patients often initially find tenofovir hard to tolerate. I am thinking of trying tenofovir myself at some point, and when I do, I will be taking certain antioxidants like glutathione to try to mitigate the tenofovir-induced antioxidant depletion (more info on these antioxidants in this post).

I'm curious if there is anyone on this forum who has tried ARV's, but has had no improvement in symptoms.

In this post, there is a report about Dr Chia's use of tenofovir for ME/CFS; Dr Chia says that:

1 out of 3 patients respond well to lamivudine ("if you're responding you'll be able to tell"). Says that response rate is a bit lower for tenofovir.

So that suggests a tenofovir response rate of maybe 20% to 25% perhaps?

 

[Remy]

But this group stressed the importance of building up slowly to these stated doses, which makes it easier to tolerate the drugs.

I think this is probably very true. I mistakenly thought since it was used for HIV prophylaxis that it would be a little more tolerable than it actually turned out to be. Low and slow does seem to make sense in this case to me too.

 

[Hustler]

12-15 Californians reportedly on Viread and Isentress now. They started off at low dose and built up to full dose. All 15 reportedly better.
Hope this helps.
Also there are alternative ARVs if any dont agree with any one person. In HIV Aids switching meds is very common.
I am on kaletra now too in addition to raltegravir and viread. Given i am treatment experienced i took the full dose of kaletra. I had done smaller doses n built up to full dose for the other two ARVs previously.
Cheers

 

[garnet10]

12-15 Californians reportedly on Viread and Isentress now. They started off at low dose and built up to full dose. All 15 reportedly better.
Hope this helps.
Also there are alternative ARVs if any dont agree with any one person. In HIV Aids switching meds is very common.
I am on kaletra now too in addition to raltegravir and viread. Given i am treatment experienced i took the full dose of kaletra. I had done smaller doses n built up to full dose for the other two ARVs previously.
Cheers

Do you know who is treating them? Or are they taking the meds on their own?

If you were doing well on raltegravir and viread, why were you started on Kaletra as well?

 

[Hustler]

I learned with Viread when to add Raltegravir.

And from that I learned when to add Kaletra to the Viread+Raltegravir.

Essentially you are well but you feel the time is right. As if you start assimilating the meds a little less well. You add one to stop yourself plateauing n dipping

 

[Farmgirl]

I tried tenofovir for a very short time. It didn't agree with me but I would not hesitate to try a different one at some other time if I had a good reason to believe it would help.

Remy. This is so interesting. How does a patient get to the point where their doctor puts them in ARV treatment???
I am 55 and pretty ill and don't want to spend 3 or more years on AV and AB treatments, which I am on, and spend a ton of money only to find there is something more effective. It feels to me like a game we must all play...like a corn maze or guessing game.

I am pretty sure I have the retrovirus because of how bad I am and our children had it passed to them in utero. FG

 

[Farmgirl]

I'm curious if there is anyone on this forum who has tried ARV's, but has had no improvement in symptoms.

I have tried many, many, many (did I say many?) various treatments over the years, except for UVBI, IV ozone, anti-parasite medication, growth hormone injections, nasal spray VIP, Ampligen, Rituximab, and ARV's.

I've heard from those who are trying ARV's with some success, but just wondering if anyone has tried them without success.

@garnet10
Did you have success with any of those treatments yourself?

 

[Remy]

Remy. This is so interesting. How does a patient get to the point where their doctor puts them in ARV treatment???
I am 55 and pretty ill and don't want to spend 3 or more years on AV and AB treatments, which I am on, and spend a ton of money only to find there is something more effective. It feels to me like a game we must all play...like a corn maze or guessing game.

I am pretty sure I have the retrovirus because of how bad I am and our children had it passed to them in utero. FG

I had an open minded doctor and I presented her with a lot of studies showing ARVs were useful against things like EBV, CMV and HHV6 too. Since I had really high titers to those viruses, she was willing to let me try tenofovir anyway. She’s a rare kind of doctor though and even her practice has changed as it’s grown.

I’ve heard it’s also possible to order ARVs online.

 

[Hustler]

I am on Viread, Isentress, Liquid Kaletra.
Cured of ME/cfs.
My 4th year on treatment.
Requires working out, persistence, monitoring, and a bit of bravery and courage.

 

[Farmgirl]

I had an open minded doctor and I presented her with a lot of studies showing ARVs were useful against things like EBV, CMV and HHV6 too. Since I had really high titers to those viruses, she was willing to let me try tenofovir anyway. She’s a rare kind of doctor though and even her practice has changed as it’s grown.

I’ve heard it’s also possible to order ARVs online.

@Remy. How us your health now? I read some of your posts on methylation and that really helped, by the way. Thanks!

 

[Remy]

@Remy. How us your health now? I read some of your posts on methylation and that really helped, by the way. Thanks!

I’m somewhere between 50-60% of normal. It’s enough to have a few enjoyable active moments in every day but not enough to consider moving away from my parents and getting a full time job. But compared to the 10-30% of years past, it feels awfully good still.

The only trouble is that I now feel like I have something to lose if a treatment goes south, so I’m actually much less experimental than I was when I was much sicker.

Thanks for the nice compliment too! Wishing you healing.

 

[garnet10]

@garnet10
Did you have success with any of those treatments yourself?

The only thing that briefly made a huge difference was extracting my very first root canal tooth that unbeknownst to me had become rotted.

A week later I exclaimed, “I’ve got my life back!” We celebrated. I slowly began to exercise again. I noted my fatigue seemed to have started in the months after that root canal was done 14 years earlier. That was it! I’d found the answer.

Had my lumpectomy for breast cancer shortly after and I felt great. Then I went for radiation therapy. Three weeks later I could not get out of bed and I haven’t been the same since.

I believe the radiation therapy suppressed my immune system and either Lyme or a retrovirus became activated. I’m guessing that the rotted root canal with endotoxemia was one of the straws on the camel’s back.

I think I am seeing some improvement with pulsed antibiotics for Lyme—I do have worse fatigue during the two weeks I take Tetracycline & Diflucan and feel “livable” during the two weeks off, but it’s still early and I don’t know if this is consistent yet.

I saw no benefit from various other antibiotic courses for Lyme over the course of 1 1/2 years, however.

Kent Holtorf, MD has an article where he talks about possible retrovirus infection (written before it was supposedly “debunked”) and he noted that his chronic Lyme patients were the ones who most often tested positive for retroviruses. He used a test called RNAaseL which is not commercially available.

Perhaps the Borrelia spirochete infection somehow helps activate an underlying retro viral infection.

I’m too scared right now to try anti-retrovirals. Most days I can get through my abridged work schedule—I am the sole provider and I just can’t rock the boat right now.

But if I go downhill again, and feel I have nothing to lose, I will try them and I will post here or start a blog to chronicle my experience.

Best to you. I mourn for my former life and it makes me so sad to realize so many others are feeling the same or worse.

 

[Farmgirl]

The only thing that briefly made a huge difference was extracting my very first root canal tooth that unbeknownst to me had become rotted.

A week later I exclaimed, “I’ve got my life back!” We celebrated. I slowly began to exercise again. I noted my fatigue seemed to have started in the months after that root canal was done 14 years earlier. That was it! I’d found the answer.

Had my lumpectomy for breast cancer shortly after and I felt great. Then I went for radiation therapy. Three weeks later I could not get out of bed and I haven’t been the same since.

I believe the radiation therapy suppressed my immune system and either Lyme or a retrovirus became activated. I’m guessing that the rotted root canal with endotoxemia was one of the straws on the camel’s back.

I think I am seeing some improvement with pulsed antibiotics for Lyme—I do have worse fatigue during the two weeks I take Tetracycline & Diflucan and feel “livable” during the two weeks off, but it’s still early and I don’t know if this is consistent yet.

I saw no benefit from various other antibiotic courses for Lyme over the course of 1 1/2 years, however.

Kent Holtorf, MD has an article where he talks about possible retrovirus infection (written before it was supposedly “debunked”) and he noted that his chronic Lyme patients were the ones who most often tested positive for retroviruses. He used a test called RNAaseL which is not commercially available.

Perhaps the Borrelia spirochete infection somehow helps activate an underlying retro viral infection.

I’m too scared right now to try anti-retrovirals. Most days I can get through my abridged work schedule—I am the sole provider and I just can’t rock the boat right now.

But if I go downhill again, and feel I have nothing to lose, I will try them and I will post here or start a blog to chronicle my experience.

Best to you. I mourn for my former life and it makes me so sad to realize so many others are feeling the same or worse.

@garnet10 you have an interesting story! I do believe I have some retrovirus. I would like to be tested....if there were such a thing. My immune system doesn't look good. I think it is also sad to find we are all suffering...and without much direction, but I am so thankful for you and others here! You see, I have been terribly sick most my life and didn't get much help, though I searched hard. I am 55 and my symptoms began at 5, so I had a hard time being forward with doctors because I thought what I was feeling was "normal"...but now I am for sure me/CFIDs and love that I have others to finally relate to!....like you. May you have as good a day as you can and God bless! FG

 

[Merry]

. . . like a corn maze

Corn maze. That's clever. Funny. Thanks, @Farmgirl.

 

[LA2SD]

The only thing that briefly made a huge difference was extracting my very first root canal tooth that unbeknownst to me had become rotted.

A week later I exclaimed, “I’ve got my life back!” We celebrated. I slowly began to exercise again. I noted my fatigue seemed to have started in the months after that root canal was done 14 years earlier. That was it! I’d found the answer.

Had my lumpectomy for breast cancer shortly after and I felt great. Then I went for radiation therapy. Three weeks later I could not get out of bed and I haven’t been the same since.

I believe the radiation therapy suppressed my immune system and either Lyme or a retrovirus became activated. I’m guessing that the rotted root canal with endotoxemia was one of the straws on the camel’s back.

I think I am seeing some improvement with pulsed antibiotics for Lyme—I do have worse fatigue during the two weeks I take Tetracycline & Diflucan and feel “livable” during the two weeks off, but it’s still early and I don’t know if this is consistent yet.

I saw no benefit from various other antibiotic courses for Lyme over the course of 1 1/2 years, however.

Kent Holtorf, MD has an article where he talks about possible retrovirus infection (written before it was supposedly “debunked”) and he noted that his chronic Lyme patients were the ones who most often tested positive for retroviruses. He used a test called RNAaseL which is not commercially available.

Perhaps the Borrelia spirochete infection somehow helps activate an underlying retro viral infection.

I’m too scared right now to try anti-retrovirals. Most days I can get through my abridged work schedule—I am the sole provider and I just can’t rock the boat right now.

But if I go downhill again, and feel I have nothing to lose, I will try them and I will post here or start a blog to chronicle my experience.

Best to you. I mourn for my former life and it makes me so sad to realize so many others are feeling the same or worse.

Hi garnet10,

My doc is needing to put me on antibiotics, and I wanted to ask if you had any long-term side effects with Tetracycline, like any of the permanent tooth discoloration from the binding to calcium in tooth enamel?

Or any long-term side effects with Diflucan?

In any case, I hope you've been able to improve with this post!