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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Antiretroviral Trial

Charles555nc

Senior Member
Messages
572
Ascorbic acid= acidic vitamin c
Sodium ascorbate= "salt" vitamin c
Calcium ascorbate= buffered vitamin c

Once or twice a month I do 25 grams sodium ascorbate a day and then 2 grams the next two days to prevent a "rebound" effect someone mentitioned but I had never read about before.

And no edta suppositories (detoxamin) arent dangerous once or twice a week, daily ORAL chelation is dangerous because it can steal minerals from the food that you eat. Theres also a dangerous form of IV edta that some doctors unfamiliar with chelation sometimes prescribe but thats about 10 years old type warnings, and anyone from acam.org is very familar with chelation.

Ya when you get despreate I suggest these things that helped me make my life more bareable.
 

Daffodil

Senior Member
Messages
5,875
nothing new to report..still keeping my head above water thanks to tenofovir, depression is bad and i spend most of the day sleeping. have been having bad spastic colon for the last few days, no idea why. hope i can start IV vitamins this week.

xoxo
 

Charles555nc

Senior Member
Messages
572
Going to talk to my doctor on thursday about a calcium channel blocker for my infections, cmv, epstein barr, mycoplasma, etc etc

Some studies...

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/2848895
Activation and infection of B cells by Epstein-Barr virus. Role of calcium mobilization and of protein kinase C translocation.
Both the activation and the transformation of human B cells by EBV were inhibited by either the
Ca2+ channel blocking agent verapamil


http://www.ncbi.nlm.nih.gov/pubmed/1656845
Calcium channel antagonists and human immunodeficiency virus coat protein-mediated neuronal injury.
Flunarizine 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 infected bone organ cultures.


**Flunarizine 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.
 

Daffodil

Senior Member
Messages
5,875
charles....cant calcium channel blockers do some harm too?

so now that Roche found XMRV....i guess things are going to start moving pretty fast for us...i HOPE. ....are they going to find a way to say next generation sequencing is fraught with flaws too???

and why i am still gravely ill....

:::sigh:::
 

Daffodil

Senior Member
Messages
5,875
o gosh i cannot remember....but i think i read something once, cautioning CFS patients about them....ugh sorry my brain is dead.
 

Charles555nc

Senior Member
Messages
572
http://www.wfprofessional.com/treatment.htm

----
Calcium Channel Blockers (17)

Verapamil-SR (Calan-SR, Novo-Veramil) 60 mg - 120 mg HS

Nimodipine (Nimotop) 30 mg QD

The usefulness of these medication in FMS and CFS patients is under study. It is thought that calcium channel blockers may increase the threshold of chronic pain receptors, thus reducing the number that fire throughout the night and interfere with sleep and immune function. One study, which needs duplication, evaluated the use of verapamil-SR for 6 months in 25 CFS patients. It was dosed at night to protect against hazards associated with blood pressure drops and dizziness. Immune system improvements were noted, as were enhanced memory, and reduced fatigue and muscle pain.

Nimodipine has been used in several patients, with reports of decreased pain sensitivity, increased energy level, exercise tolerance and mental clarity. It acts primarily on cerebral arteries, has few side effects, and is dosed in the morning. Patients responding to nimodipine therapy show improvements within 4 days. The main patient complaint associated with nimodipine is its cost.

Random Doctor also prescribing calcium channel blocker--

"As a doctor, Dr Mason Brown's primary concern was to stabilise the circulation to the brain and he prescribed Nimopidine, a Calcium channel blocker, to this end. However, he also advocated a more holistic approach, recommending a number of nutritional supplements, suggesting I practised relaxation techniques, and encouraging me to do whatever yoga I felt up to"
 

Charles555nc

Senior Member
Messages
572
Selenium used to give me MS type symptoms...I couldnt tolerate any amino acid except taurine...I couldnt tolerate NAC or beta carotene supplements, but after taking large doses of vitamin c, I am tolerating them easily...l lysine, glycine, proline. NAC, and very large doses of beta carotene witha bout 3 grams vitamin c.

In fact, the large doses of beta carotene (easily transformed by the body into vitamin a) have produced a "good" burning feeling in my lymph nodes...

So strange...
 

Charles555nc

Senior Member
Messages
572
Im telling you Daffodil, you should try what Im trying, Im gaining weight and coordination.

From a website:

Vitamin C - 15 grams sodium ascorbate, 5 grams per meal
*Lysine - 6 grams per day. Combined with vitamin C, this is a
natural protease inhibitor.
*Proline 6 grams per day. Combined with vitamin C, this is a
natural protease inhibitor.
*Glycine - 6 grams per day. This is a natural protease inhibitor.
*Arginine 3 grams per day. This is a natural protease inhibitor
and healing agent.
*A glass of all natural/organic Green Tea once every 3 days (makes me feel great but I get some nerve pain)
*MSM 5g
*N-Acetyl Cysteine 1800mg per day. 600mg per meal. This is a critical component to protect your
liver.
*Co-Q10 300-2000 mg per day, Take the larger dosages if you have serious muscle weakness or chronic
fatigue. It is very expensive, so take whatever amount you can afford.
*Vitamin E - over several weeks, build up to 1200 IU per day. (Carefully monitor blood
pressure and heart rate. Do not take more than 400 IU if you have high blood pressure.)
*Selenium 400 micrograms (ug) per day. (Note: some multi-mineral supplements
already contain 200 micrograms of selenium.)

+edta and sulbutiamine, is what im taking. I know its alot.

Edit: Nimodipine search i did showed alot of positive results from taking it, and several doctors using it specifically for cfs
... the higher dose seems to be particularly effective. Seems to correlate with those research articles i posted before. I asked the doctor what side effects I might experience and nothing really dangerous popped up.
 

Daffodil

Senior Member
Messages
5,875
lol charles...u didnt have to type all that! but thank you.

i cannot take a supplement anymore, not even one. i am too weak and brain dead and often miss my regular meds now.

my chest pains all day and i have palpitations and cant breathe too well. i'm just worse everyday! i guess thats not surprising, given my last tests showed every inflammatory marker in the thousands!

i do have this weird sense of peace, which is kind of creepy lOL
xoxo
 

Daffodil

Senior Member
Messages
5,875
hi charles. nothing here..just getting worse. had one injection of glathione, didnt feel anything. in bed most of the day with chest pan and shortness of breath.

how are you?
 

Charles555nc

Senior Member
Messages
572
Still doing:

Lysine- 2 grams per meal
Glycine-2 grams per meal
Proline-2 grams per meal
Sodium Ascorbate-6grams per meal (im 210 lbs)
Beta Carotene- 50,000iu per meal
600mg NAC- per meal

Experimented with arginine, carnitine, and taurine...stopped the arginine for sure, will probably keep using some taurine and carnitine each day at 500mg a day.

Gonna try 100mcg of selenium and 400 iu of vitamin e, every 3 days....

Noticing better coordination and lifting capacity, memory, less back pain in general...

Edit: glutathione is one of the vitamins that makes me feel worse. Also I posted on another thread that I noticed very little from iv vitamins or injected vitamins, and would shy away from them (more because of expensive than anything else). But I guess its smart to rule everything out at least once.
 

Daffodil

Senior Member
Messages
5,875
i have to say..i admire your tenacity charles! you are very motivated.

i did 1 glutathione push so far, and 1 myer's cocktail. dont feel anything yet.

4 days ago, i went to the mall. i had been putting off doing anything for very long and there was just too much piling up to be done. i ended up pushing myself and the last 3 days were hell. chest pain, shortness of breath, and even fevers. i was pretty worried i was going to have a cardiac event and got up to go to the ER many times, but then decided not to.

i dread the ER. as soon as i mention CFS, i am treated like a leper. then when i tell them i am on HIV drugs and dont have HIV...well you can imagine. when i try to tell them about this new possible retrovirus, they just look right through me, uninterested.

its funny..so many times i am 100% sure i am not going to wake up this time, but i still do.
 

Charles555nc

Senior Member
Messages
572
Its funny, I read something interesting today, I posted all those studies about how infections manipulate calcium and then i read that Lysine helps the body absorb calcium....

So Taurine and Lysine should really help limit the "free" calcium for those infections...