Antiretroviral Trial

[ukxmrv]

Daffodil, not sure if I will be any help by saying that IVIG did nothing for my ME symtoms. I had about 6 infusions (sorry can't remember exact number now). It's the usual story about how maybe more or more often would have helped - but very expensive. In the UK some docs used to do IM IG injections and maybe that would be a cheaper option if it is helpful for XMRV.

I'm really sorry that you are in agony. Hang on for a bit longer as the experts try and work out what will do the trick.

XMRV+

 

[Daffodil]

hi uk. thanks for letting me know.

 

[undcvr]

Daff, just a thought, but since you are positive for hhv6, you can still work on that while they are still researching XMRV. I mean just taking care of hhv6/ebv/cmv alone can do wonders towards your path to recovery and according to Lerner you have to be on AVs for at least 6mths. So if you cannot take drugs there are natural alternatives out there. It will not be a cure but it will help you recover at least partially. Worth a shot ?

 

[Daffodil]

hi und. i took valcyte+valtrex for 3 yrs and saw dr. lerner for almost 2 yrs, traveling every 3 weeks at $800 per trip. it didnt help and now we're virtually broke!

sue
xoxo

 

[Forebearance]

Hi Daffodil and Moon,

I have been taking Lauricidin for a while now, and it does seem to do something for me. It seems to be killing something, which means that it can cause inflammation. Anything that kills viruses or bacteria can cause inflammation in us CFS patients. So I am careful to take very small amounts of it. Otherwise I would get all inflamed and be in agony.

So I just wanted to say that it doesn't seem like a good idea to add Lauricidin to what you are already taking, Sue, if the goal is to reduce inflammation. Maybe it would be good as an alternative to the drugs. It is probably a lot gentler. My understanding is that it can kill retroviruses as well as other microbes, and that retroviruses could not become resistant to it.

 

[undcvr]

hi und. i took valcyte+valtrex for 3 yrs and saw dr. lerner for almost 2 yrs, traveling every 3 weeks at $800 per trip. it didnt help and now we're virtually broke!

sue
xoxo

So your viral load for viruses in that family is still high ? I am just mentioning this becos I have had this disease for about 18 years now and although i am not cured of it yet, I find it somewhat manageable. I am finding the most relief from it from 1800mg of Valcyte a day, long term. I know it is quite high.

But it is just that something that I have noticed about this diease is that it needs to be treated for a very long time. Things that you have been taking for awhile, you may think that it is not helping, but it is. Its just that the chipping process is very slow. But from year to year it does something.

Until I started seeing my virologist for Valcyte I pretty much had been treating myself. I think that I can say for myself that most of the dark days are quite far away. But if Lerner's thesis on the virus getting into the heart and CNS are correct, then even with the virus subdued, it will take time to mend them.
I was even able to bring down my hypercoagulation on my own without prescription drugs:

May I ask what supplements you are taking on the side ?
I take:

Asprin
Pancreatin (enteric-coated)
BHT (butyl-hydroxy-toluene)
Fish oils

Astragulus
Andrographis
Licorice root

and all the oil-based vitamins

notice that they are all easily obtained and very cheap (well except maybe the fish oil). They have all brought me relief in some form. At one point I was taking 2 gm of Asprin a day for 1 year almost 2. That really helped alot.

 

[Daffodil]

hi und. i am very glad to hear you have found some relief. my antibodies to the herpes viruses were never very high at all. in fact, they usually did not show activity...but i just didnt know what else to do.

i take some fancy liquid fish oils...magnesium when i remember...and a liver supplement. i find that if i add any more stuff, i just cannot keep up cuz of my fog.

i do have other things i should take but i keep waiting to get some more energy.

sue
xoxox

 

[undcvr]

you were tested for most other co-infections ?

 

[Charles555nc]

Anyone else still thinking about GcMAF? Or DCA? GcMAF (macrophage activating factor) works by activating macrophages that are inhibited by nagalse- an enzyme supposedly released by cancers and viruses, that stop macrophages from acting properly. DCA is supposed to allow infected cells to apoptosis...

I actually called Dr Rosenbergs office (http://www.faim.org/guestwriters/markrosenberg.html) and asked if there was a US version of McMAF but they said there was not a US vesion and that they didnt use it much at all anymore because they found better tactics against cancer.

I have to wait up to 10 weeks for my results for XRMX, and I am in such bad shape I think I may have to go to an emergency room sometimes. I took a benicar tablet and felt like I almost had a heart attack.

On Topic:
I was on antibiotics for 3 years for chronic lyme disease- and while they worked I was able to work...but they just held whatever it is at bay, worth a trial for 6 months to clear out whatever is able to be killed but after that probably not beneficial.

 

[Daffodil]

hi all. i was tested for HTLV1,2, HIV, Lyme, mycoplasmas, CMV, parasites, leaky gut, i cannot remember what else...

 

[pinkytuscadaro]

Daff,
Have you noticed any fat redistribution while on the RV's?
You had posted awhile ago that your doc said that the newer RV's would cause this more so even than azt? This is an important consideration for those considering RV's.
Wish you were feeling better.
I Think we have been ill around the same length of time (24 years for me) and I like you have not gotten any better form AV's or other treatments. I think we need intravenous help.
Pinky.

 

[Daffodil]

hi pinky. how long have you been on ARV's?

i dont know why my doc said the newer drugs cause lipodytrophy cuz the internet says its AZT that causes it.

sue
xoxo

 

[energyoverload]

i heard that protease inhibitors are by far the worst for fat redistribution. and no ones taking them for X infection at present.

 

[pinkytuscadaro]

Thanks Energyoverload,
Daff had posted a while back that her doc told her that the two newer rv's she is taking are worse with fat redistribution than AZT? That is why I asked Daff if she had noticed anything.
It would be really nice to get some accurate info on this from a HIV doc.
Pinky

 

[pinkytuscadaro]

Daff,
I am not on the RV's yet I have taken that AV's and they have not helped. I started to itch all over from them and my doc said I was allergic. That is why I thought you may becoming allergic since you were itching and the RV's.
I have not gotten better from anything that I have tried and I think I would have a similar experience as you have had if I try the RV's.
I may try them soon though and will report how it goes. I am mostly afraid of the lipodytrophy since it is not reversible from what I have read.
Pinky

 

[*GG*]

Daff,
I am not on the RV's yet I have taken that AV's and they have not helped. I started to itch all over from them and my doc said I was allergic. That is why I thought you may becoming allergic since you were itching and the RV's.

I have not gotten better from anything that I have tried and I think I would have a similar experience as you have had if I try the RV's.
I may try them soon though and will report how it goes. I am mostly afraid of the lipodytrophy since it is not reversible from what I have read.
Pinky

Have you tried LDN, it is supposed to be an immune modulator.

GG

 

[Sushi]

Hi, Not to be a downer, but I would be very, very careful with LDN in a very ill person with known pathogens/viruses. My personal experience is that those who are less virally ill may tolerate LDN but those who are very sick with known pathogens and just, well, "toxic", could have really bad reactions to LDN.

Sorry you had a bad experience. We don't really know who responds and who doesn't. I am very virally ill with multiple viruses, am XMRV+ and I have responded well to LDN. We were trying to figure out who had problems with LDN and who didn't--but didn't reach conclusions.

Sushi

 

[pinkytuscadaro]

Hello GG,
Thank you for the LDN suggestion. I took it many years ago and was planning on asking my NP to prescribe it again.
If it helps I will report back.
I am on Hepasunate right now 250mg 2x a day for 30 days if I can tolerate it.
Pinky

 

[Daffodil]

hi all. i tried LDN for a while...i dont think it really helped me.

the last couple of days have been better for me.

sue
xoxo

 

[undcvr]

Daff, how long were you on LDN before you stopped ? Did you experience any of its side effects ? The reason I am asking this is that becos of the nature of what we have, the same drug can have different effects on us at different points in time of the illness. And becos LDN works directly on the immune system, it really depends on how 'healed' your immune system is at that point in time before you use it. When it comes to side effects from medication, this is very real for me. For somethings that I take it depends on how 'recovered' I am while I am trying it.

Another point to consider is the length of time you tried it before giving up. Not to be a downer but I have been researching drug treatments with various amounts of success:-

Lerner and Valcyte/Valtrex - at least 6 months, many are in the 'years' catergory before they experience any benefit.
Interferon therapy - again measured in years for the length of time they are on treatment , assuming the can take it
Ampligent - the doctors advise at least a year of treatment if you have been sick a long time

In perspective, if all these really powerful drugs still require some length of time to work, i think we need to give these others more time too to see if we get any benefit from them.