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.