CFS: Continuing the Experiment with Anti Viral Enzymes (7)

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Mar 12, 2007.

  1. Forebearance

    Forebearance Member

    Yes, I'm still here and still taking protein digesting enzymes, in the form of Virastop. I'm up to 1 capsule a week now. Or every six days. I'll see if I can keep that dose up. It continues to make me tired, but also feels like it's helping in some way. By taking it once a week, I have some days when I can leave the house and run errands.

    Since this has turned into a sort of diary for me, I'll say that I'm also experimenting with L-Glutamine right now. I've been taking 1000 mg instead of my usual 500 mg. I read once that it was a gluthathione precursor, but I don't know how accurate that is. It makes me really sleepy.

    As soon as I give blood for my Immunosciences test (again-UPS messed up my first try), I have these experiments lined up and waiting:
    Nexavir (I'd better try it next before it expires)
    Methyl donor supplements (the first two in Rich Van K's list)
    Chlorella

    Wishing everyone better health and lots of patience!

    Love,
    Forebearance
  2. mezombie

    mezombie Member

    Hi there. Just wanted to let you know I've been following your posts as I'm interested in all antivirals, including natural ones. I really admire your patience with the Virastop!
  3. Forebearance

    Forebearance Member

    Thanks, you guys!

    Nice jump, Dancin'!

    Love,
    Forebearance
  4. cherylsue

    cherylsue Member

    If I were you, I'd start the Nexavir NOW. See how you react to it. I know you are on the lowest dose. Jump to the 50mg/ml as soon as you can. Or you can take 3ml of your low dose at a time. Work up to it.

    I've been leaving the house every day to do errands. I still need rest periods, have episodic flulike feelings, but I am gradually improving. Nexavir bumped me off a plateau.

    It may be the best thing you can do for yourself right now.

    Good luck.

    Hugs,
    CherylSue
  5. cct

    cct Member

    Hey Forebearance,

    Happy to hear that you are making progress with your Virastop amounts. You have doubled your dosage ! ! ! That is good news.

    Currently, I seem to be jumping around with my dosage amounts. One day I bounced up to 3 capsules. I thought that I had graduated to a stronger dosage. Then the next day, I only needed 2 capsules (my previous dosage amount). Today, I only required 1 capsule.

    I do not know why I am fluctuating with the Virastop amounts. It could be related to the fact that I have changed some of the products in my supplement regime.

    Since I did manage to take 3 capsules on one day, I am hopeful that I will be able to increase my regular daily Virastop dosage very soon.

    I will keep you posted.
  6. Forebearance

    Forebearance Member

    Hi, CherylSue and Carron!

    CherylSue, I started the Nexavir today. I am finding it helpful, although disgusting. I can see myself using it for a short period of time, but not for a long time, just because of the grossness factor. But maybe I will change my mind if it does miraculous things for me. :)

    Thanks for the encouragement, Carron!
    That is very interesting that you are fluctuating in your need for Virastop. May I ask how you tell how much you need? I love hearing about your progress. It's very inspiring! I hope things keep going well for you.

    Love,
    Forebearance
  7. Forebearance

    Forebearance Member

    Hey, Dancin' Fingers,

    I put all the gory details in CherylSue's Nexavir thread. :)

    Love,
    Forebearance
  8. cherylsue

    cherylsue Member

    Ha ha. This is a gross disease to be sure, and just think of all the disgusting supplements and substances we put in our bodies in the hopes we will feel better.

    I wish you luck with the Nexavir. Be skeptical and tell yourself it's not working. Be pleasantly surprised when it does.

    Hugs,
    CherylSue
  9. Slayadragon

    Slayadragon New Member

    I've delayed responding because I wanted to go over your list of supplements from your last thread. It's obviously a list that's taken a lot of trial and error to develop.

    So you think the hawthorne has helped your muscles in general rather than just your heart muscles? I wasn't aware that it was supposed to do that.

    My last blood test showed (for the first time) my TSH and T4 levels as being low. (T3, with supplementation of 165 mcg per day, was fine.) A very long time ago, when I took a tiny bit of T4 (Synthroid or Armour), I immediately got overdose symptoms.

    Maybe I would benefit from it now though. What do you think it does for you that T3 would not?

    Also, do you think the kelp is helpful? How can you tell?

    I've increased the fish oil, and that's definitely helped my skin. My mood has (except when destroyed by the doxepin) been good recently too, although I'm not sure if the fish oil has been in any way responsible.

    This is a good reminder for me to increase my magnesium dose (from 400 mg). Maybe it will help me sleep.

    Why calcium lactate rather than some other form?

    How do you know you need zinc?

    I don't think the l-glutamine is helping (or hurting), unfortunately.

    Have you gotten a noticeable response from the milk thistle or grapeseed?

    What were your reactions to ribose? Do you think it matters whether it is corvalen? (I have a little bit from Pure Encapsulations and am not sure if it's the same.)

    I'm going to ask my doctor again about the Virastop and maybe tell him your experiences. I don't want to deluge him with info from other patients, but in this case it's a surprise to me that you're getting the reaction that you are (and that I felt I strong response too on the two occasions I used it). Maybe it will be a surprise to him too.

    With regard to skin issues: I tried the "oil pulling" idea (with sunflower oil) the other night and think it made a difference. I wonder if it would help for you. I will try it a bit more and then post in my own report. (My skin is a lot better since the coconut oil, but I think the oil pulling helped too. It's supposed to also maybe help swollen glands, which have been a periodic problem for me since starting the Famvir.)

    Have you gotten any more reactions (good or bad) since increasing the Virastop?

    Your package arrived but I have not opened it yet. Sometimes even small efforts seem too much. I'm impressed at how fast you managed to get it sent off.....thank you.

    I read through the new Nexavir posts quickly yesterday and will add more comments to that thread.

    i'm really glad that you're continuing your reports!

    Best, Lisa

  10. Slayadragon

    Slayadragon New Member

    What effects (good or bad) have you noted from the Virastop? How long have you been on it?

    Are you doing anything else to control viruses?

    Also, how do you know how much you need?

    I'm thinking about using this product eventually, and so appreciate all the information I can get about it.

    Best, Lisa

  11. Forebearance

    Forebearance Member

    Thanks, CherylSue!

    Hey there, Lisa,

    I think that the d-ribose and the l-carnitine help my muscles the most directly. The Co Q-10 and the hawthorn help them in a more indirect way, by increasing circulation. And somehow improved circulation translates in my body as getting skinnier. I've been overweight and bloated, I guess.

    I don't know if adding any Armour would benefit you. If it's not broke, why fix it. I think that I need the Armour because I would probably have hypothyroidism anyway, even if I didn't have CFS. It runs in my family. So I am low on both T4, the inactive reserve form of thyroid hormone that circulates around, and T3, the active form.

    The kelp is a relatively recent thing. I've been taking it for about a year. I tried a bottle of it because it was supposedly good for the thyroid. I didn't notice much, so when it ran out, I didn't buy another bottle of it. And then I felt worse! That happens to me all the time with supplements. So I kept on taking it. I take half the suggested dose.

    I take calcium lactate because it's the gentlest form of calcium and doesn't give me gas. It requires taking a greater number of pills, but I don't mind. Also, this might sound weird, but one kind of calcium helps me sleep better than any other kind. It's Now calcium lactate. You wouldn't think that something like calcium would be different from one brand to another. But those pills have an incredible effect on me. I depend on them SO much.

    I seem to do better when I take every mineral I can get my hands on. Multi-vitamins don't agree with me, so I take the minerals individually. It's a pain, but I haven't found a multi-mineral pill that I like. And I do know that zinc is helpful for immune system functioning.

    I've been taking milk thistle for eons, and I don't feel a thing from it. All it does is keep my liver enzymes normal on my annual blood tests, and for that I am extremely grateful to it.

    Grapeseed extract is a new addition. I just began taking it in January because I'm trying to cool down my left breast so I don't get breast cancer. It's supposed to be good for fighting cancer and high blood pressure. I don't feel anything from it. It's one of those things that I'm taking just because it's supposed to be good for me. :)

    The first couple weeks I was on d-ribose were golden. That was about a year ago. There was one day where I actually felt so great. I had more mental energy. Then the effect on my brain wore off, and I had to increase the dose to keep the good effects going for my muscles, at least. It allows me to walk farther or swim longer.

    I don't think the brand of d-ribose matters, unless there are manufacturing quality issues. It is a sugar, so that makes me wonder if it would be good for you or something you could tolerate.

    I'll have to look up "oil pulling". I don't know what that is! I heard on my TV news that many people in my town have been having rashes after having a viral illness. What a coincidence! Before this spring, I had never even heard of the concept of a virus causing a rash. Mine is nearly better now. But I'm still itchy.

    Last night I took another whole Virastop capsule. Today I was a bit more tired, as expected, and by this evening I have had a very slight fever. Not enough to take anything for, but something is happening in my immune system. As I mentioned on the Nexavir thread, I wonder if the Nexavir boosts the effect of the Virastop.

    I'm glad my package arrived! I was impressed with myself for getting to the Post Office so quickly, too. lol

    I'm so glad my reports are helpful.

    Lol, Dancin' Fingers. I just wanted to warn other people who may be thinking about getting the Nexavir, about what it's like.

    Love,
    Forebearance
  12. Forebearance

    Forebearance Member

    Lol, Dancin' Fingers! Well, I didn't mean to scare you off of trying the Nexavir. If it really helps, then it is well worth using.

    I developed a slight sore throat last night and it is lingering this morning, and it concerns me. I also have a slight headache this morning. I'm not clear about what could be causing these symptoms, since I'm trying so many things at once.

    I woke up feeling a bit weird in general. Is there such a thing as a glutathione hangover?

    Love,
    Forebearance
  13. Forebearance

    Forebearance Member

    Well, last night I had bad insomnia and didn't get to sleep until 5 AM. I also had a bit of a sore throat again. I tried all my usual tricks to get to sleep and nothing worked.

    I was sitting up thinking about what could be happening with me. What it FEELS like is the Nexavir gel is inducing my liver to make more of the important enzymes, and that feels great, but then after the effect wears off, my liver is tired and makes less of the enzymes than usual.

    It seems to give me a high, but then I have to pay a price for that high later on. I know what virus killing feels like, from taking the Virastop, and this doesn't feel the same.

    So I thought that if the problem is my liver, maybe some extra milk thistle would help. I took it and it worked. I was able to sleep, finally.

    I'm going to stop using the Nexavir today and think about this. I suspect that if I start using it again, it will be at a much smaller dose.

    I'm putting this on my thread because I often have unusual responses to things, and I don't want to discourage other people too much from trying the Nexavir gel. I suspect that my liver is not in good enough shape to handle much Nexavir.

    Love,
    Forebearance
  14. Slayadragon

    Slayadragon New Member

    What I don't understand is why your system is so weak.

    Especially considering that you have heart issues though, I'm wondering if that mesenchyme product that Cheney has cooked up from Atrium/Douglas for his heart patients might be useful for you in rebuilding. Perhaps it would help the rest of your system too.

    (mcondon wrote about Cheney's use of this a little while back, I think maybe in his first recent thread about his appointment with Cheney. I might even be able to find it since I think I copied it offline....let me look.

    I like mesenchyme, based on the few experiences I've had with it. I have it on the list of things to discuss with my doctor early next week, and will report back to you what he says.

    I think that one reason that CFS sufferers decline over time is because the body spends so much energy fighting viruses that it doesn't have much left for repair.

    HGH supposedly helps this, but I think that it just signals the body to put more energy into repair, making us more tired. Mesenchyme seems to more give help though. I think.

    If you want, please let me know your thoughts since that might allow my conversation with my doctor to be more fruitful.

    Best, Lisa

    **

    From mcondon:

    I will post more information on the board later..not much time right now. But, the stuff Cheney used in his trial was specially made for him by Atrium. I am pretty sure it is not on the market yet. It is a mix of mesenchyme and heart from adolescent pigs. In an earlier trial, Cheney tried the multi-organ cell signalling factors from Atrium (adrenal, mesenchyme, thymus, etc.) and it only worked well for a few patients, and some patients deteriorated on it. So he considers his new trial to be much more successful.

  15. Slayadragon

    Slayadragon New Member

    Here's the first part of what mcondon wrote about the mesenchyme stuff.

    I would imagine Atrium/Douglas would sell it to patients other than Cheney's if asked. If they were hesitant, I would imagine Cheney would give a "release." He hardly seems like he's trying to keep his treatments proprietary.

    That company's frozen products aren't cheap though....maybe $400 for 20 days. (You're not supposed to take them all the time though. More for acute rebuilding on an occasional basis.)

    **

    He was quite excited about a new trial he just completed. Basically, the trial protocol consisted of cardiac cell signalling factors from adolescent and fetal pigs. He gets this stuff from Atrium Biotech. Roughly seven of his patients improved enormously from this treatment, but five did not. He then found through echocardiograms that patients whose cardiac function responds positively to inhaled oxygen were the ones who improved from the protocol. The patients whose cardiac function worsened from inhaled oxygen were the non-responders in the trial. He had a few theories about the underlying dynamics, but I think he was just throwing out ideas without much hard evidence.

    Unfortunately, my cardiac function worsened on the echocardiagram when I was given inhaled oxygen. Therefore, he did not think the protocol would work for me.
  16. Forebearance

    Forebearance Member

    Hey, Lisa,

    Thank you for the info about the special kind of mesenchyme/cell signalling factors Dr. Cheney is having made. It does sound interesting. I need to do some more research on it before I could say if I would want to try it.

    I do respond positively to Jozzer drops, which are an oxygen supplement, so I would probably respond positively to the cell signalling factors.

    I guess there is a lot of individual variation among people. Before I got CFS, I was highly sensitive to medications, and I had a strong immune system. I rarely got colds. So maybe there is something unique about my liver. Or maybe I have a sensitive liver and a strong digestive system.

    In the meantime, it would probably do me more good to take more milk thistle than the Nexavir gel. But perhaps a tiny amount of Nexavir would agree with me.

    I like what Dr. Grace Ziem tells her chemical sensitivity patients when they can't handle standard doses of supplements:
    "Some is better than none."

    It's a good philosophy.

    Love,
    Forebearance
    [This Message was Edited on 03/17/2007]
  17. cct

    cct Member

    Forebearance and Lisapetrison -

    Enzyme Amounts . . . . .

    I determine the amount of enzymes that I need through the implementation of kinesiology. I test myself every morning. Kinesiology (muscle testing) is not completely and totally accurate. However, I have found that it is correct far more often than it is incorrect. From my experience, I would say that muscle testing is accurate 65-75% of the time. (I believe that my doctors are accurate only 10% of the time!)

    The state of my emotional, as well as physical, health can have a huge impact on the testing results. So, on my bad days, I do not even attempt to use the kinesiology. I have also found that the weather can sway the results of the testing.

    Various Enzymes and Varying Amounts . . . .

    I think that I am jumping around with the amount of Virastop that I am taking because I have added both Enzymatic and Wobenzym enzymes back into my program. I was just taking the Virastop for a couple of months. Now, I am taking Virastop & Enzymatic or Virastop & Wobenzyme everyday. The amount of Virastop may depend on the amount of the other enzymes (?).

    Anti-viral Enzymes and Other Anti-viral Supplements . . .

    Yes, I have been taking a variety of other anti-viral supplements along with the anti-viral enzymes. I have also taken some mild anti-viral drugs.

    Enzyme Effects . . . .

    When I first started to take the Virastop, I experienced the typical herxing effect. I stopped taking the Virastop, gave myself a couple of days to recover, and then I started back with the Virastop on very low amounts (1/2 capsule). Gradually, through using kinesiology, I worked my way up to 2 capsules per day.

    Virastop Benefits . . . . .

    I have tried an abundance of enzymes during the past 18 years. I have an entire box full of them. Most of the enzymes were worthless.

    A few digestive enzymes were helpful, but only minimally.

    It wasn't until I started using Enzymatic and Wobenzyme, that I began to notice a slight improvement in my stamina. A very slight improvement.

    When Forebearance suggested using Virastop, I thought that this enzyme combination might be beneficial for me because I had experienced a possitive effect from the Enzymatic and Wobenzyme.

    I ordered the Virastop and I determined what other supplements and drugs would be helpful to take in accordance with the anti-viral enzymes. Slowly, but surely, I felt less physical stress which I interpreted as a lessening of my viral load. (This feeling was very slight and many people would not have been able to detect a difference.)

    Now, I am testing the results of the Virastop regime by eating foods that would normally cause an instantaneous flare-up. I have been testing myself for 5 days with very little flare-up reaction. I do have better stamina and my resistance to viral flare-ups has improved.

    I am a long long way from being "normal" but I have detected a very slight improvement in my health. (Case in point: I spent Thursday in bed because I was too sick to function.)

    The only factors that could be contributing to what I perceive as an improvement are 1. The end of winter (which could be a major contributor to my improved health) and 2. Virastop along with other anti-viral supplements.

    Carron
  18. Forebearance

    Forebearance Member

    Wow, Dancin' Fingers, you always have such great recipes for everything. Thank you for that. I haven't ever tried dandelion root, actually. Hmmm.

    In the research I did on milk thistle, I found out that it's been used for a very long time in Europe with no recorded bad side effects. And it's also used in large amounts for people with liver disease. So yeah, I feel pretty safe taking more than the standard dose of it.

    I usually take 175 mg a day, and so yesterday I took twice that. I'm going to take two capsules again today, because it seemed to help so much.

    Yeah, I'm thinking that maybe I could handle a little dab of Nexavir, especially if I keep taking 2 milk thistle capsules a day.

    Wow, Carron, thank you for sharing all those details! What an interesting way of determining your dosage needs.

    I'm really happy for you, that you are feeling a bit more stamina and greater resistance to viral flare-ups. That is great!!!

    I'm increasing my Virastop dose so slowly that I don't think I've killed many viruses yet. I'm mainly working on tolerating the Virastop! But in a month or so, I may be taking enough to make a dent in my viral load. (I'm assuming I have some kind of critters.)

    Anyway, I hope things keep getting better for you.

    Love,
    Forebearance
  19. cct

    cct Member

    I also use milk thistle for liver support, but I use it in conjunction with lecithin.

    I read somewhere that milk thistle and lecithin work synergistically.
  20. Forebearance

    Forebearance Member

    Wow, thanks, Dancin' Fingers!

    Love,
    Forebearance