Antiretroviral Trial

[Daffodil]

hi shannah. i doubt it. i am sure it will take several months to come up with tests for the other viruses. i can barely walk a few steps now and my heart feels like someone is standing on it :-/

i still dont think i should be this sick. even if i have a different strain, at least 2 of the 3 drugs I am on should do something. AZT is wide spectrum.

i wish i had friends who told me they would help care for my loved ones so i could just go in peace. but i was unable to make any friends over the last decade and lost the few i had.

i am so tired.

 

[taniaaust1]

hi mala. its sunny most days but i am too sick to venture outside. to be frank, i really just want to die. i hate pretending i am hopeful and happy. i am not. i dont know how others on this board seem so happy about every news that comes out. i just dont see any hope for me anymore. there is too much damage to my body.
.

Daffodil.. that sounds like quite severe depression talking. i think you need to see if you can trial something else for the depression.

i also wonder if the drugs you are trialing are causing this depression? If so.. maybe you should think about stopping your trial and waiting till more is known about treating this. Theses drugs probably will be for life (if they do work and help stop replication).

Right now, NO ONE knows best drugs or even what amount you should be taking. From how depressed you are, i really dont think this experimenting with the drugs is helpful and if you have some else and not XMRV they possibly could be making your situation worst.

 

[taniaaust1]

i think the brain fog being so bad might be a sign of too much damage...?

Daffodil, your brain dont seem to the point where damage may be permanant from this illness. I recovered from what seemed to be MAJOR damage (well by recovered, i may im now functional, its still not great, i still do have memory issues but all that matters is i can function with it).

My brain was so bad that i lost my ability to talk!! The ME got so bad that i couldnt formulate sentences no more, as my head couldnt put them together, lost ability to string words together.. so i was talking like a one year old (with only one or two words). Some times i could only point at the object i wanted. I couldnt even remember close family members!! I forgot how to make toast, I forgot how to put petrol into the car.. I even forgot how a room is left (forgot there was such things as doors, i forgot there was things in walls which open to let people out.. so looked for a way out of room up in roof).

Anyway.. here i are today, chatting to you right now. If i can recover from that bad, you have every chance of possibly recovering your brain!! Do not let that depression get to you, try to declare war on that depression which is overtaking all your thoughts.

 

[shannah]

Will VIP retest you for these new MLV's Sue?

hi shannah. i doubt it. i am sure it will take several months to come up with tests for the other viruses.

Please correct me if I'm wrong but I thought that was the purpose of the new testing at VIP - that it would catch all the latest MLV's identified in the latest paper by Alter.

from their site:

VIP Dx is pleased to announce the availability, beginning Monday, August 23, 2010, of the WPI licensed serology test to detect antibodies to Human Gamma Retroviruses that include XMRV and other human MLV-related viruses.

from this post:
http://www.forums.aboutmecfs.org/sh...ENT***-Serology-test-is-now-available!!/page3

Some good customer service:

Originally Posted by Marguerite Ross
The licensed serology test will detect antibodies to Human Gamma
Retroviruses that include XMRV and other human MLV-related viruses.

The cost is $249.

Those who previously tested negative by virus culture will receive a
letter in a few weeks explaining our retest program at no extra cost to
the patient.

 

[shannah]

Sue,

I know you're not feeling well and just wanted to bring your attention to this thread in case you've missed it. Talks about which drugs may work against other MLV's:

http://www.forums.aboutmecfs.org/sh...rals-for-MLV-related-Viruses-(CFS-type-1-to-4)

 

[Mala]

Hi Daffodil, I hope you saw what I wrote in the RAL-thread earlier. I would guess that if you are going off RAL to try something else, you should probably hang on a while to AZT to avoid thoose cytokines. I must say development astonish me sometimes. Two studies in one week and upon that, the VIP Dx says their ready to test for MLV as well the same day of the Alter/Lo-paper. Now lets hope that we have new in vitro studies as soon as possible with a workthrough of all HIV-meds on MLV as well.

 

[Daffodil]

hi all. thanks a lot for your caring posts. things are very bad for me mentally and i am not sure i want to hang on for many more yrs taking HIV meds and dealing with everything that will come along with this illness. i just dont know anymore. i want to be free. its been so long. if i stay, i will be all alone, miserable, and poor. i am not sure i see the point.

moderator...if you feel that my posts might trigger depression in others, please feel free to remove them

sue

 

[pamb]

Hello Sue,

I am so sorry to see you are feeling so badly and really just needed to send you a hug and some love.

The bad patches are soooo hard to get through and don't get any easier, especially when you've been let down by something you had such high hopes for. Sending you love and wishes that tomorrow is a better day and the day after a little bit better again. It IS possible to get it right and finally there is a lot of money and many brilliant caring people working very hard to find the way/s for all patients to improve. I hope you can see a bit of light ahead if nothing else then in the love sent your way from so many here on the board.

Caregiver Pam and patient John

 

[ukxmrv]

Hang on in their Sue, i want to two of us to live to dance on a few graves when this is over. A lot of people have caused this problem and if we stick around we'll get to see them humbled.

 

[Recovery Soon]

i wish i had friends who told me they would help care for my loved ones so i could just go in peace. but i was unable to make any friends over the last decade and lost the few i had.
i am so tired.

Hang in there any way you can. Help is on the way.

 

[Forebearance]

I'm so sorry you're feeling so bad, Sue.
This is such a hard illness I can't believe it.

Love,
Forebearance

 

[energyoverload]

Sue,

I'm sure you saw the other thread about ARV's for Murine Leukemia Viruses. From what I understand, it seems that Indinavir has good efficacy against these MLV RCR (Replication Competent Retrovirus), although there is some dispairty, depending on which type of cell is infected. But overall it seems like Indinavir (a protease inhibitor) as well as our already used AZT have good effifcacy against infectious MLVs in human cell lines.

It would seem highly likely that you harbour one of these other MLV infections from the Alter and Lo Paper. I tested negative for X on the culture. I will be retesting using the antibody.

Also to clarify others' points, I phoned VIP DX the other day and the lady on the other end confirmed that the new Antibody test will detect for not only XMRV, but also the four MLV variants as defined in the Alter paper! So this is great news. It's almost as if the WPI pointed reasearchers in the right direction with the retrovirus / XMRV hypothesis and then Alter has gone and even built on that. I think these MLV variants could explain different subtypes of the disease. Some variants may be associated with much more aggressive disease and explain why some people do not seem to make much if any recovery.

Also I think it would seem feasible that over time this MLV mutates into the other variants as identified, and this causes almost different stages of illness; myself, you and so many others have just been going on a straight downhill trajectory ever since first getting ill.

Because of the Alter paper finding I am thinking that the combination of AZT and Indinavir actually might have far greater efficacy especially in those showing up XMRV-

Obviously another concern that arises were one to try this similar but different ARV approach, is it seems like mutation might actually be a real possiblity, and therefore we should ideally employ at least 3 drugs effective against MLVs. Hopefully further research into the efficacy of ARVs against the specific MLV strains identified, will point us more in the right direction. But until then, if one were to add Indinavir to the existing AZT/Tenofovir Combo taking adequate Liver & Kidney Protection is essential.

It seems that Indinavir can cause these Kidney Stones as you mentioned earlier. I have read (can't remember where) that a doctor was using magnesium oxide in the prevention and treatment of kidney stones. I think taking this alongside Indinavir would help prevent this potentially dangerous side effect.

Hang on in there, I think we're on the cusp of something that will begin to provide relief.

Look forward to hearing everyones' thoughts & ideas.

Jake

Jake

 

[Rrrr]

hi sue,

i just want to say the obvious. when we are very physically ill, we take a down turn emotionally, too.

i find that when i'm at my sickest, physically, i'm at my lowest emotionally. it seems my emotions are directly linked to how i am doing physically. it is the body-mind connection. (everyone else says it is the mind-body connection, but for me it is the other way around: when i feel sick, i'm emotionally down. when i have even a tiny bit more energy, the tears stop and i'm feeling more hopeful)

loooov
rrrr

 

[Daffodil]

thanks so much for taking the time to post when you guys are ill yourselves. i will take the antibody test in a few weeks (doc not in office till then) and maybe something will come to light. i will also get cytokine panels, RNase L, and NK cell (not racking up debt doesnt seem so important now!)

i am getting scared because of my rapid decline as of late. my mother wanted to call an ambulance but i had to keep reminding her that there is no help for this disease. no one fully comprehends that such a thing can happen, especially in north america.

i'm almost positive now that this cannot be IRIS...the inflammatory symptoms i have after i start a medication feel different. now, its like someone is standing on my chest, feverish feeling, and night sweats - along with worsening of the CFS.

energyoverload.....i will have to read the paper when i can but did ila singh test the protease inhibitors against XMRV? i think i remember someone telling me they didnt test the protease inhibitors due to some technical difficulties....? but my memory is bad so dont quote me.

so...in this lo/alter paper they say that indinavir works against the MLV's? i am finding contradictory opinions on whether indinavir penetrates the CNS enough...but i guess i would have to stop AZT if i take it. i wonder if my doctor will even prescribe it.

i would love to ask dr. mikovits but she seems to not be answering my emails anymore at all.i wonder why some people are improving so much on my regimen and i am not. it seemed to be working for a while. i am sure some long-term patients will take long to get well but it is my understanding that once you begin to improve, you arent supposed to go back to square 1 (or worse) again.

my sister, who is developmentally and mentally disabled, keeps begging me not to die. i lie and say i won't but that is certainly not how i feel! over the last year, she has been calling local hospitals asking them to "please help my sister"

sue
xoxo

 

[Daffodil]

so i found this 1999 article stating that indinavir was indeed effective against MLV's that can infect humans:

http://jvi.asm.org/cgi/content/full/73/10/8813


thanks energyoverload

i'm confused though..if i take this one, which of the other 3 should i stop? i will have to wait for the test results and next paper to be published. if i last that long!

 

[energyoverload]

Sue,

That was the exact article I was referring to as mentioned in the other post about ARVs for MLVs.

I am starting to think that maybe AZT and Indinavir are perhaps a better combination than AZT and Tenofovir. I'm not sure where Raltegravir fits into all this. I don't think there are any studies on it and efficacy against MLV's.

However, I think we should be cautious as if we do add Indinavir this may actually be a drug that is effective against those with non-XMRV MLV's. As it seems AZT is efficacious too for MLV. But what if these MLV's are actually faster replicating and more virulent than XMRV, then we would really need to consider three HAART drugs from the start. This should prevent drug resistance from developing.

My only concern is for those that are already on the combination of either AZT, Tenofovir and Raltegravir, is that according to existing literature only AZT really has any significant anti-MLV activity of those tested. Therefore could this be equivalent to giving just AZT on its own, a scenario in which drug resistance is likely to occur? I hope that for those whom are on a combo to include AZT, that it remains effective and thus could be used in tandem with Indinavir...

This whole illness really leaves you hanging by a thread, I keep sitting it out and thinking now just make it through to the next day and the next and so on. I think I'm going to have to hold off from any treatment just 2-3 more weeks to get the VIP letter which tells us more about the new antibody testing. Then I will await results and go from there, I think this MLV Alter finding is really promising and hopeful to those of us showing up negative for XMRV!

 

[Daffodil]

energy ..i agree.

i keep thinking i am going to wind up another statistic. dont read the CFS memorial list whatever you do.

 

[Jenny]

Hi energyoverload

You mention holding off from any treatment for a few weeks. Are you thinking of anti-retroviral treatment? If so are you planning to get this in London, UK. Where?

Jenny

 

[energyoverload]

Sue...with the indinavir i don't know enough about the cns penetration, but didn't we learn that azt is actually the most cns penetrative arv..and tenofovir not so much, yet they are still saying tenofovir is effiacious generally and people are taking it... Surely if even 20% penetrates the CNS this will do something in reducing viral replication, or maybe viral mutation and resistance could form to drugs with low cns penetration if not enough medication is actually suppressing replication?

on the other thread Rrrr has some interesting info about a source who gave away some clues... about efficacy of these ARVs against MLV's. from what I understand it seems like they may already being tried by some and with some success? What do you reckon?

Also I know this is a long shot, but it would be hard to rule out the fact that Andrea Whittemore may well be on another MLV ARV drug, like didanosine or indinavir as well as AZT and other treatments, GCmaf etc. It just seems incredible how much better she seems. Could it be that the WPI knew about the possibility of other MLV's being implicated and they knew in advance the significance of these other MLV's as well as XMRV as they most likely had good knowledge of the Alter findings months prior to the actual publication release. Also I seem to remember someone contacting Dr Mikovitz and asking if it were at all possible that they could harbour another retrovirus that's not XMRV. And she said it was possible!

Jenny...I think maybe I would start AZT 600mg daily, and indinavir 800mg every 8 hours exactly.... Unfortunately I don't have a doctor who will prescribe, therefore I will obtain the medications myself and co-administer supportive supplements:

LIV52 (Liver Protection)
Milk Thistle (Liver Protection)
Intravenous Glutathione (Liver & Kidney Protection/General antioxidant protection) http://ndt.oxfordjournals.org/cgi/content/full/19/8/1951
Magnesium Oxide (May help prevent calcification leading to formation of kidney stones) - kidney stones: a potential sideffect of kidney stones
Red Yeast Rice Extract w/CoQ10 (for hyperlipidemia from ARVs)
Aspirin (it seems to make my blood flow better)

I think that should be a relatively safe approach. I have heard that gluatathione really helps support the liver improving detoxification etc. n-acetyl cysteine is given to people who overdose on painkillers as this reduces the liver damage, by increasing intracellular glutathione... I suspect it will help offset some toxicity of the ARV's...

Sue, please hang in there i know what this diabolical illness is like but we have not exhausted all our options yet. I have lost so much- all my friends, had to drop out of university and am now house bound, i'm 21. But I swear to God that to go through something like this, there has got to be a light at the other end of the tunnel. And I strongly believe this will become a reality. Sue please stay strong, I want you to be apart of the fantastic things that are surely to come our way. We are on the verge now of finding real answers. I have so much faith now in WPI, Alter & Lo, they are finding out more everyday. How on earth could these retroviruses be there and not have pathogenesis.. i just don't buy that. i just pass the day by taking rivotril and drinking coffee...! Also if you can watch some comedy! It always brightens my mood. Laughter is the best medicine. We are all learning so much everyday from others on this fantastic forum!

 

[Daffodil]

thanks a lot energyoverload.

i am sure WPI knew about the MLV's cuz VIP had the serology test available as soon as the paper was published. thats weird!

i used to rent comedies but now i am too sick to even watch tv! to top it off, my mother and sister refuse to let me go in peace, begging me not to leave them. wtf. is this for real???

thanks for the good wishes ...i do appreciate them even though i am not in a position to show it lol

i am sorry you are housebound at 21! that is awful...but on the bright side, you are young and when treatment protocols are established, you will bounce back well because of your age.

sue
xoxo