My Experience on AntiRetroVirals

[Ellkaye]

Nope, never been on viread.

It is encouraging - and perplexing - how ARVs are effective in some ME folks - yet my current regime (kivexa and viramune) has not prevented me from getting ME.

You have never taken neither Viread nor Raltegravir then. At least you are treatment experienced though...!

 

[ScottTriGuy]

You have never taken neither Viread nor Raltegravir then. At least you are treatment experienced though...!

Put that on my resume!

 

[Ellkaye]

So hope you find the answer to your ME, either with viread or raltegravir arv's or other related hiv/immune meds as and if appropriate

 

[Charles555nc]

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.

Speak my name and I shall appear.

Isentress did not cause me to recover 85% but of the two antiretrovirals definitely 85% of the improvement came from Isentress alone. If 100% was all my symptoms than I would say that Isentress helped a permanent 20% but I also saw other benefits. I think my intelligence and long term planning went up after the Isentress. Alot of vaccines are made of monkey kidneys, monkeys have their own retroviruses, ergo Isentress maybe is treating alot of different stuff inside my body, particularly in the brain. Vaccines, as they are now, are not safe. Several governments, like China and Germany, have been caught getting special "clean" vaccines for their politicians, for example.

I was XMRV positive and still believe in XMRV despite the politics and bullying. Although I am also positive for Hhv6, and cytomegalovirus. So it couldve have also helped through that angle.

Seeing large improvement with high dose thiamin (4 pills a day) and niacinamide (3 pills a day) with 1 gram MSM and 6 grams vitamin C. Problem is, as soon as I stop the pills most of the improvements come back within two days. Molybdenum, vitamin D, and selenium every day or every other day also seem to help noticeably.

Been trying to get my hands on Ferriprox, an iron chelator, that might bust through some weird new iron dominated biofilm (theory) or just steal the iron straight from inside the viruses and bacteria, since it works intracellularly and across the blood brain barrier. It even clears hiv from reservoirs inside the body, so it also kills retroviruses.

No luck obtaining the drug so far, but if anyone has a lead on where to find it (and its in stock), send me a link, and if it turns out to be legit, I would send some amount of money as a reward. Obviously no prescription required, since if I had a prescription, it wouldnt be that hard to get the drug in the first place.

 

[Ellkaye]

@Charles555nc


I read your other thread saying how it took you three of four attempts before the arv's worked, once you cleared away all the other bad stuff from your body finally... happy for u that the truvada (contains viread,right?) and raltegravir worked in the end once you cleared the way for the arv s finally to be more bioavailable(if that's the right word) and effective for this foreign looking RV.

Just wanted to echo the point u made about the raltegravir. I myself couldnt tolerate it alone without viread. Also taking Viread (reduced number of days:75% adherence monthly) accounts for most of my improvement and pulsing in raltegravir (at 30% adherence monthly) helps keep the improvement going as very effective bitherapy for now with essential multivitamins as in cancer for reinforcement as an extra protective buffer for these strong meds.
http://www.m.webmd.com/diet/features/cancer-supplements

I hope the severely ill can also likewise be helped somehow to first reinforce their weak bodies and that people can improve and benefit from modern day treatments,antibiotics to get them better too for their disease along the way case by case and then to eliminate this slower replicating rv once it can be seen more visibly even in the sickest(perhaps with reduced arv protocol). Hard job and very specialized stuff all this. I think it's best left to RV (hiv,htlv, et cetera) discoverers to educate the doctors on all this.


@ScottTriGuy
@Charles55nc

questions/emerging
Do they give rituximab in hiv aids?
Depends perhaps on initial cd4 count and if dr's can raise it first...? Hard job....Or they give it if cancer/lymphomas develop...?
Is rituximab given in well defined hiv/well defined htlv diseases? When new bcells grow do they get reinfected from day1 again or much later on? Is dual therapy needed arv+rituximab? Are there other drugs like rituximab? Better to get arv's first and then rituximab? Or vice versa?? What role for ivig in all this even if minimal preparatory effect?

@Charles55nc
Do you take the arv s full dose daily or do u adopt the reduced days protocol as per iccarre protocol? No arv fatigue? :
http://www.ncbi.nlm.nih.gov/pubmed/25833895
Four days a week or less on appropriate anti-HIV drug combinations provided long-term optimal maintenance in 94 patients: the ICCARRE project.
-not suitable for all hiv aids patients but perhaps a good option for a fair number seemingly..


Some dr's maintain that the hhv6 is nastier than the HIV in some of those hhv6+aids patients.the definition of aids is hiv+copathogen,right? Can it also be hiv alone plus a weakened immune system either by the hiv itself or just the immune system wearing itself out as time goes by?

A wealth of information out there now.
Just got to be aware of it all I guess and not exclude anything and take on board emerging patient experiences.

New times. 2015 ! It can only get better from here on in and all patients can learn from each other !

 

[Charles555nc]

@Charles555nc
!

I stopped taking antiretrovirals a long time ago, as I thought I achieved the maximum benefit and stopped herxing. Low fat diet/DMSA/EDTA before trying the retrovirals helped with the herxheimer alot. I was on the Isentress for about 4 months in a row and I tried taking the pills 3 times a day, up from two pills a day when the herxheimer got easier. (higher dosage, higher penetration, better results).

I think I did try the Isentress once at 4 pills a day, but had too many medication related side effects with no increase in herxheimer.

Just for information purposes there are other retroviruses other than HIV and XMRV, they are called HERVs. Human endogenous retroviruses. And of course Monkey kidneys used in vaccines would have their own set of retroviruses/viruses (like SV-40).

 

[Ellkaye]

Monkey kidneys used in vaccines?
Sounds like a source of foreign retroviruses yes.
Thanks for the info. Very interesting.
I never go over the recommended dosages.
Glad you ve been able to keep it all at bay since. I ask myself if i d try and keep to the recommended dose once i ve been on reduced no.of days for a good couple of months. But I dont think i could personally.
Would u go back on the arv s now or later? Keep it in the armour just in case?

 

[ScottTriGuy]

@Charles555nc

...
@ScottTriGuy
@Charles55nc

questions/emerging
Do they give rituximab in hiv aids?
Depends perhaps on initial cd4 count and if dr's can raise it first...? Hard job....Or they give it if cancer/lymphomas develop...?
Is rituximab given in well defined hiv/well defined htlv diseases? When new bcells grow do they get reinfected from day1 again or much later on? Is dual therapy needed arv+rituximab? Are there other drugs like rituximab? Better to get arv's first and then rituximab? Or vice versa?? What role for ivig in all this even if minimal preparatory effect?
...

My doc told me this week if I wanted to try rituximab I would have to pay for it - so no it would seem, on the Canadian formulary at least, it is not approved for HIV - nor have I heard of any HIV patients taking it.

Monoclonal antibodies
https://en.wikipedia.org/wiki/List_of_therapeutic_monoclonal_antibodies

 

[ScottTriGuy]

Just read this on wiki:

Long term use of lamivudine leads to emergence of a resistant hepatitis B virus (YMDD) mutant.

 

[Ellkaye]

Have reduced now to :

Viread 245mg × 3 days per week

Raltegravir 800g x the same 3 days per week


You come this far believe me you sure do realize a thing or two..

 

[Ellkaye]

Thank you very much for your support Little Bluestem

 

[Ellkaye]

Thank you very much for your support countrygirl also. I appreciate it.

 

[Ellkaye]

Thank you very much for your support maryb I appreciate it too.Really.

 

[Ellkaye]

Raltegravir is a bit strong for me without a good ten days off it after four days on it so I'm reverting back to :

25/31 days Viread 245mg &
11/31 days Raltegravir (2×400mg)

which is how I get maximum benefit taking me to 95%.

I will then seek to gently lower the viread days a little perhaps to 21/31 days to see if the 95% sticks and my feeling now from being treatment experienced is that it will.

I would be bold to refer to this as a kind of Iccarre 2. But whereas Iccarre has you on all your meds on reduced days every week, what I am finding for ME is that intermittent breaks every 10 days from both meds and pulsing Raltegravir in fortnightly is the way ahead..

But this is all 18 months on. And I only started the Raltegravir 6 months ago (after 12 months).

Talk about being light years ahead of this new paradigm. Very strange place to be. But much better for it. Was not an easy decision to take but I went for it and learned quickly on the way.

It may well be that some who rushed to try arv's took too much on the full hiv aids dose. It's important to find your number of days as overmedication symptoms can mimic ME symptoms.

 

[Ellkaye]

Current treatment protocol is still 25/31 days viread and 11/31 days raltegravir :

V245+R800
V+R
V+R
V+R
V
V
V
V
V
V
V
Off
Off
Off
and repeat back to the top V+R.

This is the optimal regimen for me keeping me at 95%.

I tried to do v+r 3days/week like hiv iccarre but it was a bad idea and instable.
Have reverted back to my normal regimen now as described above and it is perfect and stable. It kicked in again when I restarted and am so thankful for it. It feels really good.

The Ruscetti/Mikovits RV is a slower replicator and once under good control it can be kept under control.Lipkin knows Ruscetti/Mikovits isolated the RV.

Simon Wain Hobson is the only man who can change things. I hope he does the right thing. He is the only man to rival Lipkin in terms of reputation,status,power.
Lipkin did what he did for his own reasons - public management is his honour not to create panic, cleaning up the blood and vaccines behind the scenes.Now Hobson must do what he wants to do for his reasons and carry on maybe what Lipkin could not. Hobson is a fine, honest, compassionate researcher on the earth to help people. They cannot just leave the patients dangling and suffering and cover it up as many different diseases. The mantle now passes to Hobson.

This is a direct plea to Simon Wain Hobson over there in France in Paris. Au secours Dr Hobson. Aidez les patients. The only lab not to publish anything is Hobson's Retrovirology lab at Institut Pasteur RV HQ lab in Paris France. Ian Lipkin's definitive science is MEANINGLESS without Simon Wain Hobson's internationally renowned team publishing their own definitive study. Hobson has a HISTORICAL duty to answer the call from the patients to rise up to the honour of doing the right thing. His lab was created on those founding principles. All teams around the world published. All of them. But so far just SILENCE from Simon Wain Hobson. Pasteur Paris HQ RV lab still have not had their say in FULLY replicating the Ruscetti/Mikovits paper.

 

[Ellkaye]

I encourage those of you who believe in the Ruscetti/Mikovits RV to contact Simon Wain Hobson and ask him to fully replicate the Ruscetti/Mikovits study of 2009. No matter what anybody says here or elsewhere try to get the message to him.

So far only SILENCE from Pasteur HQ RV lab over in Paris,France. Vey eery indeed. Not even a negative. If it was not that important then so many other labs around the world would not have published. It is important given every single lab around the world published and all those labs decided it was important until they had all published one after the other after the other after the other and never stopped even if everyone published negative continually. Even if Hobson publishes a negative, he must publish. It's retrovirology and everyone except his team published globally.

There is a GLARING omission in the literature.
Perhaps he knows he'd publish positive if he follows the replication fully.
With the new data and new revelations and clinical observations there is an urgent need to publish. This has gone on far too long.
The majority of the scientific community made a mistake or insufficient studies because of the confusion and natute and sequence of events. Plain tragic.

 

[worldbackwards]

Hey @Ellkaye, you're famous!
http://qz.com/595909/why-bad-science-wont-ever-die/

 

[Ellkaye]

There is definitely a lesson to be learned here.
I am as cured as is possible of ME with antiRETROvirals.
The incovenient truth is hard for some.
When it's so controversial only very few are right. Mikovits and Ruscetti were right. Right on. The Lipkin study was a joke.

Simon Wain Hobson WHERE ARE YOU ????

 

[Hip]

The incovenient truth is hard for some.

The inconvenient truth that you are ignoring, @Ellkaye, is that the drugs you took may have improved your ME/CFS by other mechanisms:

(1) The antiretroviral drug tenofovir (Viread) that you take also reduces inflammation (see this post).

(2) The antiretroviral drug raltegravir (Isentress) that you take also fights herpes family viruses, which have been linked to ME/CFS (see this post).

(3) And note your ME/CFS was only mild anyway. You started at level 5 only the Lerner scale, which corresponds to mild ME/CFS where patients are still capable of performing a full time job of 40 hours a week.

Many ME/CFS patients on this forum would love to be at the level of health that allows them to do a 40 hour a week job; many would feel they are almost cured if they could go back to full time work. Yet full time work was your starting point when you began taking antiretroviral drugs.



I am not entirely ruling out the possibility that an unknown retrovirus might conceivably play a role in ME/CFS. Dr Ian Lipkin and Dr Sidney Grossberg are still looking into this. However, bear in mind that there are other ways of explaining why you (slightly) improved on antiretrovirals.

 

[Ellkaye]

(1) i take both viread and raltegravir. The second one had to be added in to keep the effect up. Retroviruses cause nasty inflammation, indeed.

(2)my cd3,4,8 counts multiplied x2.5 on the two arv's.Most of my herpes virus tests are negative or only intermittently weakly positive(hhv6) and so as insignificant as in the general population,hhv6 may flare up with colds/flu I guess,reactivated from the RV.

(3)the 20-40h week included sleeping in the toilets of the companies I worked in before going to client visits. Gruelling. Or in the restaurant toilets where I'd force feed myself. The Bell scale talks of extra reduction in activity levels in the subsections of each category.

my vo2max on arv's increased by 33%.
that respresents my mean average improvement on the Bell Scale (50% to 95% = 45% improvement) and Karnofsky scale (75% to 95% = 20% improvement). Average of those equates to 33% VO2max improvement on arv's. From a vo2max score of 26 before to 35.. only hard training brings such a jump...

At some stage you just have to look at the raw hard data. Mikovits and Ruscetti were spot on.

That's All Folks.


Dr Hobson OVER THERE IN PARIS FRANCE WHERE ARE YOU ????? Enough is Enough. On compte sur vous pour faire l'étude s'il vous plaît. We're counting on you.

It's 2016. We're taking this right to the doorstep of the Institut Pasteur if we have to. We ll travel to France and up to Paris and beg Simon Wain Hobson to do the study.