Antiretroviral Trial

[Charles555nc]

Good to hear Daffodil,

Since I improved about 40% after the mass dose vitamin c, taurine and pregnenolone, I decided to re try Lose dose naltrexone and see if I noticed a difference. It sent me into a couple day minor crash- felt alot like a cytokine storm- and I WAS ONLY TAKING .5 mg of the usual 4.5 mg dosage. Thats crazy. Never trying that stuff again. Feel like someone hit me all over with a baseball bat.

In a couple days Im gonna retry antiretrovirals and see if I can tolerate them better.

Edit: I dont understand your want to restart valcyte, I tried it for 3 months and noticed no improvement, and I think you said you didnt improve either.

 

[Tristen]

Good to hear Daffodil,

Since I improved about 40% after the mass dose vitamin c, taurine and pregnenolone, I decided to re try Lose dose naltrexone and see if I noticed a difference. It sent me into a couple day minor crash- felt alot like a cytokine storm- and I WAS ONLY TAKING .5 mg of the usual 4.5 mg dosage. Thats crazy. Never trying that stuff again. Feel like someone hit me all over with a baseball bat.

In a couple days Im gonna retry antiretrovirals and see if I can tolerate them better.

Edit: I dont understand your want to restart valcyte, I tried it for 3 months and noticed no improvement, and I think you said you didnt improve either.

Nothing makes me sicker faster than LDN, even at microscopic doses. Many people say you gotta low and slow. Well that's not true for everyone. I'll never take it again either.

 

[Daffodil]

hi charles. i just thought i'd add vaclyte cuz i dont know what else to do. i talked to my doctor today..no new insights. my head is throbbing and swollen..i think the azt is giving me chest pains and i am always nauseaous too...which is kind of a new symptom. i kind of want to die.

 

[Charles555nc]

Things to try..........

1. Mass dose vitamin c (sodium ascorbate), pregnenolone, taurine- really lowered my adhd and suicidal/self injurious thoughts

2. Sulbutiamine (cns thiamin booster, anti depressant effect, also shown to work against hiv1) Thiamine disulfide as a potent inhibitor of human immunodeficiency virus (type-1) production - Shoji S et al, Biochem Biophys Res Commun. 1994 Nov 30;205(1):967-75.

3. Edta/alpha lipoic acid chelation, edta removes calcium and metals from viruses, inactivating them. Alpha lipoic acid shown to reduce hiv in alot of studies. Iron chelators also show big improvement vs hiv and other viruses, if you can get them prescribed.
4. Preventing immune vitamin deficiencies, zinc, b vitamins, etc etc
5. Diet improvement if possible, dont know what your diet is.
6. Calcium channel blockers shown to inhibit almost every virus associated with cfs. http://www.autismcalciumchannelopathy.com/Infectious_Agents.html

 

[globalpilot]

Charles - I read the viral part of the link in #6. Very interesting. I wonder too how the chelation helping so many autistics ties in with the EDTA being antiviral.

Daffodil - I've been in contact with the lab in ARUP again and discussed with them why they don't accept samples in Canada. The reason is they think it will get held up at the border. I explained to them I send blood over regularly as do others and I have not had a problem. They may change their minds - I'll let you know.

 

[globalpilot]

The equilabrant has 100mg oxymatrine per pill. When I looked at studies using it successfully for hepatitis they were using 600-900mg oxymatrine. So you'd need 6-9 pills and that would get very expensive. On the other hand, I've heard people report they can't tolerate the pure oxymatrine. I did order the pure oxymatrine myself to save $. I havent tried it yet.

I never tested postive for any pathogen either until the stomach biopsy for enterovirus which showed it in >50% of the cells. Oh, I forgot, I did have chlamydia pneumonaie, took antibiotics, the antibodies came down, still just as sick.

When I read through Charles paper he posted on the calcium channel blocking , they discussed several viruses. Maybe you just have to keep testing for them one by one until you find what's infecting you.

 

[Charles555nc]

7. Tindamax- never tested positive to lyme disease, but still helps alot with mental focus, especially when taken with the edta suppositories.

 

[Charles555nc]

Yesterday I tried 2 pills of raltegravir 4 hours apart, one pill of tenovir in the middle, and 24 grams of vitamin C and 4 grams of taurine, 5 hours after that...

=Worst headache ever known this morning

 

[Daffodil]

charles...there is NO doubt in my mind now, that Tenofovir hits the virus that causes CFS. when i stopped the drug during Vistide, i deteriorated badly and my NK cell function went down to 3. 2 days after i started the drug again, i was feeling better. 2 days ago, i went out grocery shopping, cooked, and cleaned. yesterday, i ran errands at the mall for 3 hours. 2 days in a row i went out...thats a big thing for me.

i got my inflammation profile back from UNVEX. i will upload it...i think it was a waste of money this time....the values are all over the place and i cannot make sense of them at all.

so now i am on tenofovir, raltegravir, and azt 300 BID. i decided that, despite the chest pain and other things that really worry me about AZT, i will have to just stay on it anyway. i also added valcyte...lets see what happens.

charles..just remember that there is quite a lag time before you start feeling better on the ARV's. i felt a lot worse for a long time.

xoxo

 

[Charles555nc]

As soon as I took the first Raltegravir, I had a huge bowel movement and my nerves started buring all over my body. This morning, my eyes were blood red, and I really had the worst headache of my life, that was no exaggeration.

Unsure of what to do....ridiculous amounts of pain.

 

[Daffodil]

charles im sorry! you know my advice would be to stay on the drug.....but see now i am unsure if raltegravir helps or not..i know tenofovir and azt does...but i am just not too sure about RAL. make sure you are getting bloodwork. the symptoms should subside eventually...RAL doesnt have a lot of side effects.

our bodies have been sick a long time....

xoxoxo

 

[Charles555nc]

Did your teeth and neck hurt as much as mine do? Tough to drink ice water cause of my sensitive teeth and my neck pain radiates down into my throat. Other than that, doing chores seems much easier, as well as leaving the house at certain times.

 

[Daffodil]

everything hurt, charles.....it was bad.
you can always take a benzo for a little temporary relief...?

those fkers have mikovits locked up...this is a collosal joke. this gets more surreal everyday.

 

[Charles555nc]

Continued looking into calcium....since statins seemed too dangerous.

http://www.ncbi.nlm.nih.gov/pubmed/9674806
Nimodipine- calcium channel antagonist used in neurological complications of HIV.


http://www.ncbi.nlm.nih.gov/pubmed/3029971
Ca2+ influx blockers were found to inhibit the replication of CMV-
Verapamil, nifedipine specifically mentitioned.


http://www.ncbi.nlm.nih.gov/pubmed/1656845
Calcium channel antagonists and human immunodeficiency virus coat protein-mediated neuronal injury.
Flunarizine (calcium channel blocker) mentitioned as one of the most effective at preventing.


http://www.ncbi.nlm.nih.gov/pubmed/12394783
Calcium dysregulation and neuronal apoptosis by the HIV-1 proteins Tat and gp120.



http://www.ncbi.nlm.nih.gov/pubmed/10375733
Effects of taurine on L-type voltage-dependent Ca2+ channel in rat cardiomyocytes infected with
coxsackievirus B3.



http://www.ncbi.nlm.nih.gov/pubmed/16365449
HHv6 activates cytokines involved in calcium mobilization



http://www.ncbi.nlm.nih.gov/pubmed/17307846
Mycoplasma hyopneumoniae mhp379 is a Ca2+-dependent,
sugar-nonspecific exonuclease exposed on the cell surface.



http://www.ncbi.nlm.nih.gov/pubmed/12450768
Chronic fatigue syndrome: a risk factor for osteopenia?- associated infections sequester calcium from bones


http://www.ncbi.nlm.nih.gov/pubmed/7770009
Mycoplasma-mediated bone resorption in bone organ cultures.


**Flunarizine (what I would like to try) is a drug classified as a calcium channel blocker.
Flunarizine is a non-selective calcium entry blocker with calmodulin binding properties
and histamine H1 blocking activity. It is effective in the prophylaxis of migraine,
occlusive peripheral vascular disease, vertigo of central and peripheral origin, and
as an adjuvant in the therapy of epilepsy.

 

[Charles555nc]

There goes my one diet soda a day,

http://www.rense.com/general70/aasp.htm

 

[undcvr]

charles...there is NO doubt in my mind now, that Tenofovir hits the virus that causes CFS. when i stopped the drug during Vistide, i deteriorated badly and my NK cell function went down to 3. 2 days after i started the drug again, i was feeling better. 2 days ago, i went out grocery shopping, cooked, and cleaned. yesterday, i ran errands at the mall for 3 hours. 2 days in a row i went out...thats a big thing for me.

i got my inflammation profile back from UNVEX. i will upload it...i think it was a waste of money this time....the values are all over the place and i cannot make sense of them at all.

so now i am on tenofovir, raltegravir, and azt 300 BID. i decided that, despite the chest pain and other things that really worry me about AZT, i will have to just stay on it anyway. i also added valcyte...lets see what happens.

charles..just remember that there is quite a lag time before you start feeling better on the ARV's. i felt a lot worse for a long time.

xoxo

Daff I am so glad u didn't listen to me and decided to go off the Vistide and that Tenofivir brings you so much relief. The only problem is that after reading this post of yours I immediately went back on Truvada and Isentress and I feel nothing. I do not feel the immediate relief like you do, so I am concluding that we have something totally different.

This is concerning becos only valcyte and tamiflu actually really works for me and my insurance has recently changed to a managed health plan and they cut out ALOT of antivirals, for some reason they kept alot of the ARVs on their list. Amantadine does not work like Tamiflu does.

Hope you are feeling better.

 

[Charles555nc]

I just had, the first pleasant dream in years. I dreamt I met a nice girl in a fictional college and messed with her theater arts play to get her attention...or maybe Im just getting crazier. lol.

Heres what I added to the arvs yesterday. I didnt have nearly as bad a hang over feeling as I did before. My main concern is nerve damage/brain pain at this point because my hands go numbish sometimes...and they are my most severe symptoms from the arvs

start(upon waking): Edta suppository with 100mg alpha lipoic acid, 4 grams non acidic non calcium vitamin c, 4 grams Taurine as a calcium blocker, and 100mg glutathione
5 hours later- 400mg Isentress
2 hours later- 200mg Truvada
2 hours later- 400 mg Isentress
5 hours later- 22 gram vitamin c, 2 more grams Taurine, 100mg glutathione, 50 mg zinc gluconate
Next morning- 3 grams vitamin c to prevent "vitamin c rebound"


Undcvr: maybe I dont know enough about tibetan culture but couldnt your signature be a little more positive or explained...maybe its reverse psychology nursery rhyme because most tv shows depict Tibetans as valuing life alot...but thats usually monks...

 

[Charles555nc]

Spent 3 hours at the mall today...sweated up a storm, but I got some chores done!

 

[Daffodil]

charles...thats great. please continue to keep us posted!

und.....its all different now. the 2 good days i had on tenofovir were nice, but i crashed right after. i have deteriorated again. maybe the vistide was helping..who the heck knows. i have added valcyte now and feel like someone is standing on my chest again. i dont even know why i added it. i am being a moron, just throwing whatever i can in my mouth. i dont even care anymore, half of me wishes i would die.

i asked my doctor for epivir cuz dr. chia's patient says it really helped her brain fog but my doc said no. i am worried he is thinking of taking away my ARV's....he is probably holding off cuz he knows i will jump out the window if he does.

sorry i am so depressing...

why would tenofovir help me so much for 2 days and then stop working?? the same thing happened when i started AZT..and the same thing happened when i started valcyte years ago.

i heard some results of a study will be out in 30-60 days....have no idea which study this is..i imagine the xmrv/lipkin one...which will be negative

 

[xrunner]

Heres what I added to the arvs yesterday. I didnt have nearly as bad a hang over feeling as I did before. My main concern is nerve damage/brain pain at this point because my hands go numbish sometimes...and they are my most severe symptoms from the arvs
start(upon waking): Edta suppository with 100mg alpha lipoic acid, 4 grams non acidic non calcium vitamin c, 4 grams Taurine as a calcium blocker, and 100mg glutathione

Charles,
if you're still looking for a calcium channel blocker, you may want to take a look at Stephania Tetranda, recommended by Stephen Buhner for Lyme-related nerve damage and other. This herb is a powerful calcium channel blocker but it does other things as well. I used it a couple of years ago for palpitations which were quite horrible at the time and I found it very effective. Lots of background scientific info on the herb is in Buhner's book Healing Lyme.
Ref edta and ALA, I assume/hope you don't have any amalgams or mercury toxicity of some kind ...
all the best