Antiretroviral Trial

[Daffodil]

thank you jake. i really appreciate the suggestions. i have been tested for all the mycoplasmas at the lab in new jersey (the one nicholson is or was affiliated with..MDL i think it was?)

i just am so tired of trying things. i am just so tired and sick, i cannot even think enough to order anything or read, my brain feels so swollen.

dr. mikovits did tell me that i could have another retrovirus. in fact, another doctor said that too. but that leaves me dead. no one is going to look for another virus for many years; they are too busy with just xmrv.

i would probably have done amplien by now if there was anyone here prescribing it...i would only be able to afford it for a year or 2 though.

deep down, in my heart of hearts, i still feel that there is a possibility i could improve later on. the virus is deep in my tissues by now after this long. maybe it will just take time for the body to try to kill off most of the infected cells? or maybe this is wishful thinking to prevent myself from going insane!

i just cannot figure out why i would blackslide at this point. are the virions being released into the bloodstream causing inflammation?..more wishful thinking lol

just want my brain back ....but the meds probably dont even get up there in adequate amounts!!

everyone says by the 6th month on ampligen, their brain fog is gone...except for one story i read about a man who was sick 11 yrs and was still pretty sick and foggy after 6 months. who knows what happened to him after.

sue
xoxox

 

[Charles555nc]

Hey Daffodil,

Like I've said before, I am suffering advanced symptoms like you. Ive found a new combination of vitamins that seems to help...here are my latest thoughts

1. Recently I went through two week period where I slept most of the day. Usually when I have my down turns, they end after a week. I really think I couldve gone on indefinitely sleeping away my life. Now I take about 1.5mg of melatonin each night, skipping a day now and again. My reasoning: melatonin production is important for the immune system and proper sleep. Too much will promote inflammation, but a small amount will make you better, almost required imo. Melatonin production is probably moderately inhibited/reduced by chronic illness.

2. I have found 100mg alpha lipoic acid and 800mg malic acid every other day improves my symptoms. Any more frequently and I see less improvement. Reasoning: I think neuro cognitive diseases may cause a buildup of intracellular metals. Metals like iron/copper are growth promoters for bacteria/fungus- and anyone who has been sick a long time has dangerous secondary infections, which by themselves could be immunosupressive. Large amounts of metals are also immuno-suppressive. Alpha lipoic acid is used as a chelating agent, malic acid is also supposed to have some chelating properties also. Malic acid has long been used in fibromyalgia but I think it works with lyme and other neuro cognitive disorders, again too much will make you feel worse tho.

3. I am still doing the anti biofilm, EDTA suppositories every three days with tindimax, probably also helps with metal overload. EDTA also has anti inflammatory properies. I have added a single dose of Benicar (I was on the Marshal protocol for awhile), Benicar inhibits the massive inflamation caused by the overproduction of vitamin D by the body. Dr Marshall has studied this a long time and is publishing a study. Vitamin D supplements make my symptoms 4x as bad so thats why I added a Benicar to help reduce the inflammation. I had to stop the benicar before on the marshall protocol, because I think I developed an autoimmune reaction from it (my body just attacks anything in my system thats last too long or is in too high quantities perhaps). Marshall protocol you take benicar like 3-4 times a day. Now, a benicar every three days doesnt seem to negatively effect me.

4. After following the steps listed on 1,2, and 3. I have actually redeveloped the sensation of hunger/appetite after several years. For several years before, I would not feel hungry just feel really awful if I didnt eat something occasionally. Really a pleasant surprise, one day perhaps Ill feel human again.

4. I still think AZT should be removed from your regimen. Its nerve damaging qualities and ability to make bacterial infections worse are well documented. The first sign of nerve damage via drug reaction is increased emotional distress. I had ridiculous nightmares and spontaneous fits of crying after taking Biaxin for awhile.

5. I hope to try ampligen in the next 3 months, but I have been having problems saving up the sizeable cost of the doctors visit, treatment cost, and expensive labs required. I am lucky I live about an hour and a half away from the doctor's office.

 

[Daffodil]

thanks charles. scared of removing AZT...it penetrates CNS.

complete deterioration has begun. i can tell by now when i am worsening again.

unless this is some sort of die-off, i'm a goner.

-S

 

[Rrrr]

that kind of lingo (i'm a goner) scares me, daffodil. maybe it is better to go off the meds?

can you call yr doc?

 

[Daffodil]

hi Rrrr.

my doc doesnt know about this virus at all. he is letting me try the drugs basically as a favor because i am so ill.

its strange....the sick feeling in my lungs, the massive head swelling, the neck swelling and cramping..its all coming back. what on earth could be causing this downturn? i feel sort of like i am dying or something - not to sound melodramatic but thats how it feels.

i keep thinking about who will watch out for my sister if something really does happen to me. its horrible to be both mentally and physically tormented at the same time.

thanks for writing!

sue
xoxo

 

[Rrrr]

ooooh, it is so hard to read what you write above, sue. i so want this to work for you.

and yes, the mental and physical torment together sucks. and i find that the physical torment seems to make the mental torment inevitable. often.

 

[Charles555nc]

I have tried antiretrovirals, but not raltegravir. When I was on Azt my numbness got worse, I started losing my relexes in my legs, and my back muscles started feeling like they were breaking down (Myopathy or Rhabdomyolysis: A condition in which skeletal muscle cells break down) I got through three weeks but the weak reflexes and extreme back pain scared me off of it.

http://aras.ab.ca/azt-general.html

from a data article:

"Data show that lamivudine, abacavir and zidovudine penetrate the central nervous system (CNS) and reach the cerebrospinal fluid (CSF). The mean ratios of CSF/serum lamivudine and zidovudine concentrations 2 - 4 hours after oral administration were approximately 0.12 and 0.5 respectively. The true extent of CNS penetration of lamivudine and its relationship with any clinical efficacy is unknown.
Studies in HIV infected patients have shown good penetration of abacavir into the cerebrospinal fluid (CSF), with a CSF to plasma AUC ratio of between 30 to 44%. In a Phase I pharmacokinetic study, the penetration of abacavir into the CSF was investigated following administration of abacavir 300mg twice a day. The mean concentration of abacavir achieved in the CSF 1.5 hours post dose was 0.14mcg/mL. In a further pharmacokinetic study of 600mg twice a day, the CSF concentration of abacavir increased over time, from approximately 0.13mcg/mL at 0.5 to 1 hour after dosing, to approximately 0.74mcg/mL after 3 to 4 hours. While peak concentrations may not have been attained by 4 hours, the observed values are 9 fold greater than the IC50 of abacavir of 0.08mcg/mL or 0.2mcM."

Would protease inhibitors better penetrate the CNS? Havent heard anyone trying that particular form of HIV meds for xrmv...

http://depts.washington.edu/hivaids/arvae/case7/discussion.html this article states Efavirenz penetrates the cns and is known to possibly cause psychiatric side effects.

I guess what Im saying is that you have options...its not AZT or bust imo.

 

[Daffodil]

charles....thanks, hon. i am too foggy to even think at the moment...lol

at the 6-month mark, i am going to get all my blood work again from VIP and see what happens. if the NK cell function and cytokines are normalizing, as well as RNase L and elastase, maybe it will just take a lot more time to feel improvement.

one researcher suggested i test TGF beta, MIP1alpha, beta tgf beta il6 and il8.

i was just hoping i would have to stay on these crappy drugs till a better one comes out in 3 yrs or so...

i guess we will know more in september when something comes out from WPI

love
sue

 

[heapsreal]

maybe ask for an immunoglobulin infusion/injection, this can help strengthen immune system and help with viral side effects/inflammation etc

 

[Daffodil]

hi heap. unfortunately, they wont give me immunoglobulins here...but i will ask anyway. thanks for the suggestion.

i am deteriorating faster now and today is especially horrible. it seems all my neck swelling has returned and the fog is severe. this is how i was before i began the meds for sure. i even feel feverish again and have the sore lymph nodes.

i'm thinking this cannot be a good sign.

 

[cfs since 1998]

I have tried antiretrovirals, but not raltegravir. When I was on Azt my numbness got worse, I started losing my relexes in my legs, and my back muscles started feeling like they were breaking down (Myopathy or Rhabdomyolysis: A condition in which skeletal muscle cells break down) I got through three weeks but the weak reflexes and extreme back pain scared me off of it.

That is interesting because I got severe numbness while taking beta-glucan, an immune modulator made from yeast cell wall.

Would protease inhibitors better penetrate the CNS? Havent heard anyone trying that particular form of HIV meds for xrmv...

http://depts.washington.edu/hivaids/arvae/case7/discussion.html this article states Efavirenz penetrates the cns and is known to possibly cause psychiatric side effects.

I guess what Im saying is that you have options...its not AZT or bust imo.

They've tested abacavir and protease inhibitors on XMRV in vitro and none of them have worked thus far.

hi heap. unfortunately, they wont give me immunoglobulins here...but i will ask anyway. thanks for the suggestion.

i am deteriorating faster now and today is especially horrible. it seems all my neck swelling has returned and the fog is severe. this is how i was before i began the meds for sure. i even feel feverish again and have the sore lymph nodes.

i'm thinking this cannot be a good sign.

I'm so sorry to hear this! If I were you, I would take isoprinosine (immunovir) too.

 

[Mala]

Daffodil: are you taking any supplements to manage, if so which?

 

[Daffodil]

hi mala. i have some vitamins i take on some days but usually i am too foggy to remember. it takes everything for me just to remember to take the 3 HIV drugs.

sue
xxoo

 

[omerbasket]

They've tested abacavir and protease inhibitors on XMRV in vitro and none of them have worked thus far.

I think that is not entirely accurate. In the study they did find HIV-1 Protease Inhibitors that had some effect against XMRV:

Nine known HIV-1 PIs were evaluated for activity against XMRV (Figure 1). The most effective was nelfinavir, albeit with an EC50 of 34.3 M. The following PIs had very modest anti-XMRV activities: atazanavir (EC50 of 64.8 M), amprenavir (EC50 of 68.0 M), lopinavir (EC50 of 72.2 M), and ritonavir (EC50 of 76.4 M). Darunavir, indinavir, saquinavir and tipranavir were essentially ineffective against XMRV in vitro, when tested up to 100 M.

So I wonder - may these drugs be effective also, and perhaps will have a role since they have better penetration to the CNS (if they have that better penetration)?

 

[Daffodil]

things continue to deteriorate for me with more swelling feeling, perspiration, chest pain, and malaise. cannot leave bed. very little appetite. feel like rotting death.

 

[omerbasket]

Hang in there, Sue.
Perhaps there is a way for you to consult with Dr. Peterson, Dr. Klimas etc.? Possibly via webcams. You can try and contact Dr. Mikovits to see if she can give you Dr. Peterson's mail. And also to ask her directly if she has some advices for you (although she is not a phyisician, but she might know about other drugs that works against XMRV etc.).

 

[Daffodil]

hi omer. i have emailed all the researchers by now and no one has replied. i dont think anyone knows what to do. even peterson won't know. i think we need a drug to target all the cells with provius in them to dampen the inflammation...it will probably be a new cancer-type drug they will release one day.

anti-inflammatories were suggested to me once but i am reluctant.

thanks for post
sue

 

[Daffodil]

i read that some people on ampligen have a jump in their NK cells at the 5-month mark. wouldn't it be wonderful if the downturn was related to immune reconstitution? ha. i guess we look for hope in even the most hopeless circumstances.

 

[Rrrr]

i read that some people on ampligen have a jump in their NK cells at the 5-month mark. wouldn't it be wonderful if the downturn was related to immune reconstitution? ha. i guess we look for hope in even the most hopeless circumstances.

I AM SO SORRY U ARE SO SICK! It really concerns me....

 

[Mala]

I hate myself for writing this. I really do not like when people say they have all the answers and "know" what to do in this illness. But I do think you have a point Daffodil. The downward turn could be reconstitution. I must say that when it's about managing my own illness vitamin D is always important. You sweating is a sign for me that your body wants it. I would say sweating is a good sign. But but.... we are all different. I have no patented solution. To avoid more pills: try and get some sunshine on your body. It will do the job. An hour a day. The more skin you expose the greater dose. Was it Canada you were from? What's the weather like were you are?