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My Experience on AntiRetroVirals

Ellkaye

Senior Member
Messages
163
Got ME/CFS after MMR vaccine 20 years ago as a teenager.
Was at 50%/5 on the Bell/Lerner scales prior to treatments.
Currently treated with continuous Viread 245 mg daily with a few days off fortnightly and 800 mg Raltegravir pulsed in fortnightly too. Multivitamins only other thing I take.
Am now at 95%/9.5 on the Bell/Lerner scales. so that is is 45%/4.5 increase on those scales.
All done under strictest medical suveillance. Everyone is different but that's my story. I am not saying this is a model to follow but just reporting my case. Different people need different ARV's. Not the same in everyone...

My observation is that the band is playing on and that the 5 million pound fiddle that is the Pace study is the most expensive instrument in the band it would seem.....

HIV negative. All other tests more or less normal/within normal range/intermittently abnormal/normal so not significant.

That's All Folks
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
That's great news - so happy for you. do you mind telling us which country you were treated in. I presume this was private treatment. did you see an M.E specialist for this, or some other Dr. Why antiretrovirals?

Thanks
Justy.
 

shannah

Senior Member
Messages
1,429
Congratulations! Great story. How long has it taken to achieve this level of improvement?
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Got ME/CFS after MMR vaccine 20 years ago as a teenager.
Was at 50%/5 on the Bell/Lerner scales prior to treatments.
Currently treated with continuous Viread 245 mg daily with a few days off fortnightly and 800 mg Raltegravir pulsed in fortnightly too. Multivitamins only other thing I take.
Am now at 95%/9.5 on the Bell/Lerner scales. so that is is 45%/4.5 increase on those scales.
All done under strictest medical suveillance. Everyone is different but that's my story. I am not saying this is a model to follow but just reporting my case. Different people need different ARV's. Not the same in everyone...

My observation is that the band is playing on and that the 5 million pound fiddle that is the Pace study is the most expensive instrument in the band it would seem.....

HIV negative. All other tests more or less normal/within normal range/intermittently abnormal/normal so not significant.

That's All Folks

I have been checking every day for this post for some time, Ellkaye! Thank you for this exciting information and I do hope others who have been following this regime will now follow your (and your doctors') courageous example and let us know their experience with this treatment. I know it can't suit everyone, of course, but to know the percentage would be wonderful.

I am so thrilled for you!

I guess you will have to take the ARVs for life. Is that so?


Life-long good health to you!

For the rest of us...........the band plays on........................and .....................on :cry:
 

Hip

Senior Member
Messages
17,824
Was at 50%/5 on the Bell/Lerner scales prior to treatments.
Currently treated with continuous Viread 245 mg daily with a few days off fortnightly and 800 mg Raltegravir pulsed in fortnightly too. Multivitamins only other thing I take.
Am now at 95%/9.5 on the Bell/Lerner scales. so that is is 45%/4.5 increase on those scales.

Hi Ellkaye, thanks for posting your story.

So you got this improvement ME/CFS from taking Viread (tenofovir) and Isentress (raltegravir). Can I ask, how many months of drug treatment did it take to get from 5 to 9 on the Bell/Lerner scales?

A score of 5 on the Dr Lerner's Energy Index Point Score probably corresponds to mild ME/CFS (see here for a description of the mild, moderate and severe levels of ME/CFS).
Lerner's Energy Index Point Score:

0 = Bed-ridden, up to bathroom only.
1 = Out of bed 30 - 60 minutes a day (sitting in chair is out of bed).
2 = Out of bed sitting, standing, walking 1 - 2 hours per day.
3 = Out of bed sitting, standing, walking 2 - 4 hours per day
4 = Out of bed sitting, standing, walking 4 - 6 hours per day

5 = Perform with difficulty sedentary job 40 hours a week, daily naps.

6 = Daily naps in bed, may maintain a 40 hour sedentary work week plus light, limited housekeeping and/or social activities.
7 = No naps in bed. Up 7:00 a.m. to 9:00p.m. Able to work a sedentary job plus light housekeeping.
8 = Full sedentary workweek, no naps, some social activities plus light exercise.
9 = Same as 8 above plus exercise approximately 1/2 to 2/3 normal without excessive fatigue, awakens next morning refreshed.
10 = Normal

So these drugs enabled you to almost get back to the normal healthy state, from a starting position of mild ME/CFS.



Dr Jamie Deckoff-Jones And Raltegravir

You will perhaps know that Dr Jamie Deckoff-Jones and her daughter Ali both had improvements in their ME/CFS after taking anti-retrovirals. They took:

tenofovir (Viread) 300mg once daily
raltegravir (Isentress) 400mg twice daily

But the interesting thing was that when Dr Jamie came off raltegravir, she stopped improving; but her daughter Ali who remained on raltegravir kept on improving further:
Ali and I started AZT and Isentress [raltegravir] in March 2010, added Viread [tenofovir] in May 2010, discontinued AZT in Feb 2011. I discontinued Isentress in August 2011 and remained on Viread monotherapy until two weeks ago. Ali continues on Viread and Isentress.

We both improved for the first year, but it wasn’t a clean experiment, as I’ve said all along. We did other things concurrently. When we started, I thought we’d ride on the coattails of HIV and have viral load measures in a year or two. We sent lots of blood to the WPI and Dr. Mikovits was studying us, but the specific results were never shared with me and are now lost, with the rest of Dr. Mikovits’ data.

We stopped AZT after 11 months, with no way to monitor, to prevent long term toxicity. Neither of us noticed much of anything coming off of it. By the summer of 2011, I knew there would be no help with monitoring and came off Isentress in anticipation of our both stopping the drugs. I wanted to see what happened to me first, before Ali came off. I tried to stop Viread shortly after. Nothing noticeable happened when I stopped Isentress, but I felt worse after a few days of stopping Viread, better when I went back on. I did that two other times by the first part of 2012, with the same results.

Meanwhile, Ali continued to go uphill. Me not so much. In hindsight, I wish I had not stopped Isentress, since Ali continued to improve and I didn’t.

Source: Our experience with antiretrovirals | X Rx Blog




Raltegravir Is Antiviral For Herpes Family Viruses

The interesting thing about raltegravir is that as well as fighting retroviruses, raltegravir is effective against cytomegalovirus, and herpes simplex virus, inhibiting replication by a 30- to 700-fold (ref: here).

In fact, raltegravir may be effective against all herpes family viruses, including HHV-6, EBV, varicella zoster virus (ref: here).

Raltegravir blocks the functioning of an essential protein called terminase needed for the replication of herpes viruses.

So raltegravir may be as good as Valcyte in targeting a broad range of herpes family viruses, with the added advantage that raltegravir is much better tolerated that Valcyte.

Thus is may be that your improvements in health were not related to reducing retrovirus loads, but were due to reducing herpes family virus loads.



EDIT 2018: I later figured out that the antiviral effects of raltegravir for cytomegalovirus (which are only demonstrated in vitro in the above study) will not manifest in vivo when you take this drug orally.

That's because at the normal safe maximum oral dose, you cannot achieve the drug concentrations in the blood used in the in vitro study.



There is also a thread here by @Charles555nc who noticed anti-retrovirals including raltegravir improved his ME/CFS symptoms. He said that at a guess, he would attribute 85% of the improvements he obtained to raltegravir.
 
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Hip

Senior Member
Messages
17,824
@Ellkaye
Did you require any special monitoring by your doctor (like regular liver function tests) for these two antivirals that you took?
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I had lunch today with a friend who is also HIV+ (but not m.e.) and he switched his regime 2 weeks ago to a new ARV cocktail Triumeq (abacavir, dolutegravir and lamivudine) - he said the constant anxiety he had been experiencing on his previous ARVs totally disappeared.

That, and the other HIV thread, got me thinking - I said to him maybe I should try different ARVs to see if they have an effect on m.e. - and now I'm reading about raltegravir - I see my doctor on Tuesday and will ask her about adding or switching my ARV regime.
 

Hip

Senior Member
Messages
17,824
Raltegravir (isentress) is being studied in folks with MS:

https://clinicaltrials.gov/show/NCT01767701

Interesting. Looks like the reason they are trying raltegravir is because some researchers think MS might be caused by endogenous retroviruses:
Some researchers in Great Britain and Europe now believe that MS results from activation of "human endogenous retroviruses," or HERVs -- remnants of retroviruses that infected humans eons ago and became incorporated into the germline, such as that it is now part of the human genome.

This theory has prompted a group in the U.K. to begin a trial of the HIV drug raltegravir (Isentress) in about 25 MS patients, to see if the drug affects brain lesions seen in MRI scans. The trial is expected to conclude this August, with results potentially reported before the year is out

Source: HIV and MS: Could a Link Lead to New MS Treatment? | Medpage Today

I guess though that even if raltegravir does ameliorate MS symptoms in this clinical trial, that will not prove the HERV theory of MS, because other MS researchers think Epstein-Barr virus is the cause of MS, and raltegravir likely inhibits EBV as well as retroviruses.
 
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barbc56

Senior Member
Messages
3,657
You will perhaps know that Dr Jamie Deckoff-Jones and her daughter Ali both had improvements in their ME/CFS after taking anti-retrovirals

I think this was before xmrv was found to be contamination. She is now of the belief that she has chronic lyme, but then she's also into vaccines are evil, so that makes it difficult to say what protocal she is now advocating.

Barb
 

Hip

Senior Member
Messages
17,824
@barbc56
It is true that Deckoff-Jones and Ali took raltegravir to target XMRV at a time when people still thought XMRV might be a cause of ME/CFS.

But I am saying that the reason they both improved while taking raltegravir might be related to the fact that raltegravir has potent antiviral effects against herpes family viruses.
 
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ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Dr. Chia is using lamivudine for enteroviral ME patients with varying success. Perhaps worth a shot.

Thanks - I'm currently taking Kivexa (lamivudine + abacavir) and Viramune (nevirapine).

2 thoughts:

Surely by taking 3 ARVs, they must be covering much of the retroviral 'spectrum' - thus, (my) m.e. is not caused by a retrovirus.(?)

Or, if (my) m.e. is caused by a retrovirus, how much more sick would I be if not for the effects of my current ARVs. (they are either having no effect on the m.e. retrovirus or partially containing it).
 

Hip

Senior Member
Messages
17,824
Have they been diagnosed with herpes?

I just been searching through Dr Jamie Deckoff-Jones's blog. She writes she does not have active herpes infections:
This seems like a good time to note that I have never had mono and am serologically negative for EBV. Since I was an ER doctor for 16 years and exposed to lots of mono, my body must be pretty good at keeping invaders out. Ali’s EBV tests are consistent with prior infection, and we both have low titer IgG for HHV-6, like almost everybody. There is really nothing to suggest that we have activated Herpesviruses as part of our picture, opportunistically or otherwise.
Ref: 1
So perhaps my herpes virus speculation is wrong.

However, she does not mention whether she or her daughter Ali were tested for cytomegalovirus, which raltegravir is proven to fight.



Another reason why raltegravir might help ME/CFS related to the HERVs (endogenous retroviruses) that Dr De Meirleir et al found activated in the gut tissues of 8 out 12 ME/CFS patients tested. (Dr Huber's ME/CFS research looking for HERVs in the blood found nothing; but when Dr De Meirleir tested the gut tissues, he found activated HERVs).

It is possible that the chronic enterovirus infections that Dr Chia found in the guts of ME/CFS patients could be activating these HERVs in the gut. And then activated HERVs themselves have been speculatively linked to autoimmunity...
 
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Hip

Senior Member
Messages
17,824
Here is another clinical trial using anti-retrovirals to try to reduce levels of the endogenous retrovirus HERV-K, which is found in amyotrophic lateral sclerosis (ALS).

The anti-retroviral drugs they are using to fight HERV-K are:

darunavir — a protease inhibitor
ritonavir — a protease inhibitor
raltegravir — an integrase inhibitor
zidovudine (AZT) — nucleoside analog reverse-transcriptase inhibitor

A good list of anti-retrovirals is give here.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Here is another clinical trial using anti-retrovirals to try to reduce levels of the endogenous retrovirus HERV-K, which is found in amyotrophic lateral sclerosis (ALS).

The anti-retroviral drugs they are using to fight HERV-K are:

darunavir — a protease inhibitor
ritonavir — a protease inhibitor
raltegravir — an integrase inhibitor
zidovudine (AZT) — nucleoside analog reverse-transcriptase inhibitor

A good list of anti-retrovirals is give here.

Interesting that they are starting patients on all 4 at once. I'd thought they'd try 1 at a time.