Antiretroviral Trial

[Daffodil]

thanks und. i was taking LiverLonger (recommended to me by dr. leo galland and dr. lombardi) but i seem to become lazy and sick of taking pills so i stop.

i am going to type out a proper chart hopefully tomorrow. i have to make a better effort with the supplements somehow. maybe deep down, i just dont have faith in them anymore...but i will do it.

as soon as my mind starts to clear a little with the azt, my heart really starts acting up. i can feel it already, the pressure increasing. there must be something i can do other than stop the drug.

i have to insist on seeing a cardiologist..maybe there is something?

thanks
sue
xoxo

 

[undcvr]

Increase the dosage, that is the best advise i can give you. There were days and weeks that I took the supplements at 5-10 times the normal recommended dosage. It felt like my immune system needed it. It wud suck up all the nutrients and demand more. Even today I still take supplements much higher than what is recommended. I have come to accept the fact that we are cfs-ers, we need more. I buy these supplements in bulk powder and cheaply.

'thanks charles. i have a ton of vitamins here. the reason i stop taking them is because i just cannot keep up. because of the fog, i can barely remember the HIV meds. when i begin taking vitamins, i start forgetting the HIV meds.'

Yes u really need to start a chart and go back to it every now and then. It is surprising how so many pple with cfs forget to take their supplements for even forget to take what has worked for them before. I have recently started a chart too and I try to remember to look back to it from time to time.

 

[Charles555nc]

Top 6 supplements that have worked for me.

1. Zinc gluconate. I am a walking zombie without this. I once got blisters on my feet from new shoes and normal walking that turned into scars when I forgot to take zinc for a couple weeks. My understanding is that HIV people become massively zinc deficient. Used in almost every enzyme/immune cell in the body.

2. Melatonin- Reinvigorates the thymus gland, helps you sleep and boosts immune system

3. Malic acid- Helps for muscle pain/healing

4. Alpha lipoic acid- anti cancer, binds to the bad heavy metals (dont take at the same time as zinc, because it will bind to it)

5. Green Tea. Numerous studies on its effect against retroviruses and herpes viruses. Too bad u cant drink enough to significantly up your blood levels to have a larger effect against retroviruses. Wish they made an IV of this.

6. Coenzyme coq10. I have read almost all the alternative health tricks out there, and I read about a coq10 "Bomb" of taking 6grams of coq10 for a huge immune boost. Expensive in that amount, but worth it at a smaller dose once a month, especially if you have heart problems.

Notable mentition: selenium. Good against all kinds of viruses, but produces MS type symptoms when I take it (numbness, weakened reflexes)

 

[Daffodil]

ty charles. i have an aritcle listing several supplements to take with AZT. they were trying to determine if anything could offset its toxicity. i will have to find it.

4 am..i woke up and vomited. heart rate is still below 90 at rest but chest / left arm discomfort continues. brain feels somewhat better.

 

[garcia]

Notable mentition: selenium. Good against all kinds of viruses, but produces MS type symptoms when I take it (numbness, weakened reflexes)

Charles, what form/brand of selenium are you taking?

 

[undcvr]

Top 6 supplements that have worked for me.

1. Zinc gluconate. I am a walking zombie without this. I once got blisters on my feet from new shoes and normal walking that turned into scars when I forgot to take zinc for a couple weeks. My understanding is that HIV people become massively zinc deficient. Used in almost every enzyme/immune cell in the body.
3. Malic acid- Helps for muscle pain/healing
5. Green Tea. Numerous studies on its effect against retroviruses and herpes viruses. Too bad u cant drink enough to significantly up your blood levels to have a larger effect against retroviruses. Wish they made an IV of this.
Notable mentition: selenium. Good against all kinds of viruses, but produces MS type symptoms when I take it (numbness, weakened reflexes)

Charles555nc, try Zn picolinate or orotate instead of gluconate. I understand it goes into tissue more and they are more bioavailable. Work it out to about 50mg of ELEMENTAL Zn, not just Zn in its combined form.
Malic acid, citric acid, acetic acid, they are all very interesting, part of the cell's Kreb's energy cycle. Many nutritionists recommend lemon juice every morning (1 lemon), wait half an hr then eat. It alkalizes the blood as well.
For Green tea its all about the ECGC, make sure it is standardised to that. But if u r taking large amts of ECGC take a folic acid supplement. ECGC has been linked to neural birth defects in Japanese women where they drink alot of green tea in Japan.

For Selenium, take it in the Selenate form, it is less toxic than the selenite form and more bioavailable than the l-selenomethionine form. I have taken it at about 400mcg with no side effects. It has immune supporting properties by itself besides just making the gluthathione molecule.

I can point u to cheap bulk powder CoQ10.

 

[maryb]

undcvr which brand of selenium do you take, there are so many, most of those available in the UK are not the selenate type though.

 

[shannah]

Hello Daffodil,
I just wanted to let you know that I feel as sick as you seem to feel even though I am not taking retrovirals.
I am taking many supplements and just started famvir and nexavir and feel as if I have the flu again. I have felt like I have had a severe stomach flu for over 8 months on and off mostly on.
Looking over the 24 years that I have been ill (mostly bed ridden) with this disease I do see a progression and feel that I may not live long if they don't come up with a treatment soon.
It sure is a hard life: spending our lives trying to get well instead of living and loving life.
It is funny: I had breast cancer in 2004: the most aggressive kind triple negative and a tumor was actually in one of my lymph nodes. I went through the strongest chemo they have for Breast Cancer and I survived.
When I had breast cancer I got so much sympathy. Cancer, chemo, radiation, was nothing to the pain suffering and loss that cfs now known as xmrv has caused me. It is so unfair.
I hope and pray that they come up with a cure soon for all of us.
Pinky

Pinky,

I'm so sorry to hear what you've gone through. I've been ill over 27 years myself and certainly know the hardships and unbearable suffering all too well.

Interesting comments about your experience with cancer. I remember hearing from a long term sufferer a few years ago that when she had cancer and was undergoing her treatments, she actually felt better. Others beside her would moan and groan but she felt more well than her usual CFS self.

It may be wishful thinking but I'm hoping the WPI has something up their sleeves to offer us this coming year. Hope eternal! Sometimes that's the only thing that keeps us going forward.

 

[undcvr]

undcvr which brand of selenium do you take, there are so many, most of those available in the UK are not the selenate type though.

Maryb - it is Douglas Labs, it is from the US.

 

[Charles555nc]

So I passed out briefly giving the blood necessary for my XRMV test. Im like other people here, who dont feel they have much time left, I had to be poked 3 times because my blood clotted so fast. Can someone email me a doc in North Carolina that maybe would prescribe antiretrovirals? charlesbeutt@gmail.com. Im feeling more than a little worried for myself...it is a bit unusual to not know when your bad enough to go to the emergency room...

 

[maryb]

Thanks undcvr got to make a list of the best vits and minerals to try once I've got rid of these mercury fillings and started some chelation.

 

[undcvr]

So I passed out briefly giving the blood necessary for my XRMV test. Im like other people here, who dont feel they have much time left, I had to be poked 3 times because my blood clotted so fast. Can someone email me a doc in North Carolina that maybe would prescribe antiretrovirals? charlesbeutt@gmail.com. Im feeling more than a little worried for myself...it is a bit unusual to not know when your bad enough to go to the emergency room...

'I had to be poked 3 times because my blood clotted so fast' - Charles555nc can you please take some enzymes and asprin ASAP. Hypercoagulation in the blood is a very very bad thing, it is a step away from Coumarin and Heparin. It is also one of the causes of DVT (deep vein thrombosis). If you can, take Solgar PANCREATIN 3X a day with meals. It is very cheap. It is the only brand besides MUCOS Wonbezyme that ensures that their enzymes are Enteric coated. This is very important, it lets the enzymes get into your system.

For a very long time, over 8 months, I took 2-3gm of asprin daily, it brought me alot of relief. This is very important for cfsers I feel. There is a theory going around that viruses in the body produce fibrin to hide from antivirals and other medication. If you do not remove the fibrin you cannot get to the viruses. And I can tell you that I personally did not get any side effects from taking such a high dose of asprin for such a long time, which tells me that I probably needed it. The same goes for the other fibrinolytic enzymes, Nattokinase, Serrapeptase and Lumbrokinase, the last which is Earth Dragon Peptides and something Cheney recommends. I have done my research and come to the conclusion that an enzyme is an enzyme, some of you might respond better to one or another but go for the cheapest first, and Pancreatin enteric-coated is the cheapest and best out there in terms of quantity. Same goes for aspirin. I just take nattokinase cos I like to eat Natto. U can even take them (enzymes) on an empty stomach, just remember to drink lots of water if you do.

 

[Ronan]

Top 6 supplements that have worked for me.

1. Zinc gluconate. I am a walking zombie without this. I once got blisters on my feet from new shoes and normal walking that turned into scars when I forgot to take zinc for a couple weeks. My understanding is that HIV people become massively zinc deficient. Used in almost every enzyme/immune cell in the body.

2. Melatonin- Reinvigorates the thymus gland, helps you sleep and boosts immune system

3. Malic acid- Helps for muscle pain/healing

4. Alpha lipoic acid- anti cancer, binds to the bad heavy metals (dont take at the same time as zinc, because it will bind to it)

5. Green Tea. Numerous studies on its effect against retroviruses and herpes viruses. Too bad u cant drink enough to significantly up your blood levels to have a larger effect against retroviruses. Wish they made an IV of this.

6. Coenzyme coq10. I have read almost all the alternative health tricks out there, and I read about a coq10 "Bomb" of taking 6grams of coq10 for a huge immune boost. Expensive in that amount, but worth it at a smaller dose once a month, especially if you have heart problems.

Notable mentition: selenium. Good against all kinds of viruses, but produces MS type symptoms when I take it (numbness, weakened reflexes)

I'm thinking about getting some of these supplements but dont know what dosage i should take. Can someone let me know how much i should take of the following? I want to try and order them today.

- Zinc Gluconate
- Melatonin
- Selenium in selenate form
- Coenzyme coq10 - 6grams (Is this just 6grams once a month?)

Thanks!

 

[Sushi]

So I passed out briefly giving the blood necessary for my XRMV test. Im like other people here, who dont feel they have much time left, I had to be poked 3 times because my blood clotted so fast.

I took the Hemex Labs hypercoagulation test as probably the majority of CFS patients have hypercoagulation. I did. I took low molecular weight heparin injections daily for a few months and now take nattokinase daily.

Get blood taken before was a nightmare--like you said, it clotted and stopped flowing. Now the natto makes it normal. If I am going to have blood drawn I double the natto dose the night before. It doesn't clot and stop flowing any more.

Undrcvr suggests aspirin as well. Check with your doc as aspirin can cause small stomach bleeds. But there is a way to keep the clotting normal. And Undcvr is right--it is one of those things that needs to be seen to. Sorry I can't suggest a doc in NC.

Best wishes,
Sushi

 

[Daffodil]

brain fog a little better but azt side effects are bad. 50 mg atenolol have lowered heart rate but heart squeezing feeling, sick feeling, and extreme exhaustion continue. i feel horrible on this drug and have a really bad feeling about continuing with it.

i have been too sick to go to doctor and its been 6 weeks since my last bloodwork. will get bloodwork this week.

 

[ukxmrv]

Really sorry to hear that Daffoldil. It's been a while now that you have been commenting on AZT and reactions. Hope that the bloodwork can be done and sheds some light on what is happening. I really admire your perseverance.

XMRV+

 

[undcvr]

I took the Hemex Labs hypercoagulation test as probably the majority of CFS patients have hypercoagulation. I did. I took low molecular weight heparin injections daily for a few months and now take nattokinase daily.

Get blood taken before was a nightmare--like you said, it clotted and stopped flowing. Now the natto makes it normal. If I am going to have blood drawn I double the natto dose the night before. It doesn't clot and stop flowing any more.

Undrcvr suggests aspirin as well. Check with your doc as aspirin can cause small stomach bleeds. But there is a way to keep the clotting normal. And Undcvr is right--it is one of those things that needs to be seen to. Sorry I can't suggest a doc in NC.

Best wishes,
Sushi

Sushi, try taking the real thing: Natto over rice, I know you will like it !
About the Asprin: Cheney notices that cfsers have lots of food sensitivities, and salicylates are one of them. But I notice that for me, this is not the case and its benefits definitely outweight the cons if any. At any rate, we are supposed to have trouble producing stomach acid to digest the food we eat too. Asprin can compensate for this taken with meals.

If you experience any stomach pain, I use licorice root to get around it. But you have to Chew it to release the protective effects on the stomach lining. There are DGL versions around. Another thing i do is drink cabbage juice, that protects the stomach too. Cabbage juice is very very good for you.

 

[undcvr]

Daff ... please keep taking the supplements that you have around.

 

[Daffodil]

i will, thank you.

it's strange..i keep oscillating between rushing to get bloodwork, papsmear, etc. done...and just letting it slide because such a big part of me wants death.

 

[undcvr]

Trust me, u dont really want death. U want for all of this to go away, 2 VERY different things.

But in its time death will come to you, you will only get to experience it once, so dont rush it.