CFS: Continuing the Experiment with Anti Viral Enzymes (6)

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Feb 19, 2007.

  1. Forebearance

    Forebearance Member

    Greetings, everyone!

    My experiment continues. It's slow but steady. I am up to a half a capsule of Virastop brand protein digesting enzymes, once a week.

    I'm not getting big cold symptoms now from taking the Virastop. I just have a small amount of nasal/sinus congestion that never quite goes away.

    And it still makes me tired, but in a good way, for a few days after I take it. And it still relieves my nerve pain and some of my muscle pain.

    Love,
    Forebearance
    [This Message was Edited on 02/19/2007]
  2. Forebearance

    Forebearance Member

    I love my doctor! I saw her this afternoon. She doesn't give me grief or stress. She's not an alarmist. And I think she does an excellent job of supporting me, considering that she's a general doctor who didn't know anything about CFS until I came along.

    She thought my impedance cardiogram was interesting, but not anything to get alarmed about. She supported my trial of hawthorn, Co Q-10, L-Carnitine, etc. She was happy to prescribe me some Nexavir.

    We both scratched our heads over the Redlabs Basic CFS test panel. We ended up deciding that, even if I did get the test, the results wouldn't mean anything to either of us. If I found out which group of CFS I fall into, it wouldn't change the treatment I am doing. And I think I know which group I'm in, anyway.

    So we decided to go for the Immunosciences test instead. The results will be more useful, because I can compare them with other people here. I should be giving blood for it later this week.

    She recommended a good heart doctor who specializes in women's hearts (aka diastolic dysfunction). So I am really excited and happy and feeling hopeful about what I may accomplish this year, health-wise.

    Love,
    Forebearance
  3. Slayadragon

    Slayadragon New Member

    Which Immunosciences tests are you getting?

    As you know, I just got Rnase-L activity, NKC activity, apoptosis and alpha interferon.

    Swedeboy got a whole bunch of other stuff. I'm not sure how useful the other stuff was,, since he tested normal on most of it.

    Have you ever had HHV6/EBV/CMV or NKC activity done before.

    I am looking forward to hearing your test results.

    I'm also glad you're doing well on the Virastop.

    From the last post.....I always take about 3000 mg of fish oil (two softgels). Yesterday I added about 6000 mg more (since I have some in liquid form).

    Today my hands and upper arms are so much less dry! My lips too. I can't believe this was such a problem for me.

    I'm guessing this may be a problem with other things too. Mood if nothing else.

    What do you think of flaxseed oil?

    Thanks for bringing this up.....it's amazing what a difference it's made so fast.

    Best, Lisa

  4. cct

    cct Member

    Hi Forebearance,

    I am checking in with my Virastop report! ! !

    It's "steady as she goes" for me.

    I am still at 2 capsules, once a day, 4-5 days a week.

    If I happen to miss taking the Virastop for too many days in a row, I do notice a difference. I do feel worse if I do not take the Virastop (or another enzyme combination) on a regular basis.

    Forebearance, have you tried other enzyme supplement therapies? One of my doctors suggested Zymactive and another doctor suggested Wobenzyme N.

    I used both Zymactive and Wobenzyme N with good success. No side effects. And on the days that I am off of Virastop, I still use Zymactive and Wobenzyme.

    I was wondering if Zymanctive or Wobenzyme could offer you the support without causing the "cold" symptoms that you are experiencing with the Virastop?


    Wishing you the best,

    cct
  5. cherylsue

    cherylsue Member

    Wow, it relieves your nerve and muscle pain. That's great. I'm glad the cold symptoms are abating for you, too.

    Keep up the good work.

    Hugs,
    CherylSue
  6. Slayadragon

    Slayadragon New Member

    In what way do you feel worse when you're not taking Virastop?

    Best, Lisa

  7. Forebearance

    Forebearance Member

    Hey, Lisa!

    I'm getting the same four tests you got from Immunosciences. They seemed like the best basic tests, and I am not financially well-off and I have lousy insurance. They call it the Molecular Biology of CFS panel.

    I look forward to comparing my results to yours!

    Did you ever notice that Redlabs offers a test for HHV6 that tells you how much of strain a and how much of strain b you have? I just noticed that today.

    I've had EBV tested three times. The first two times were in the first four months of my illness, and both were positive. The third test was after I had been sick for three years and was in the process of getting diagnosed with CFS. The doctor told me it looked like I had never had EBV! What the ? It's a medical mystery to me. No doctor has ever explained why that happened.

    I've never had HHV6, CMV or NKC activity tested before. I'm sure my doctor would let me test for them if I wanted to, but I hate blood tests. I'm a huge wimp about anything medical. I guess I haven't felt a need to do those tests so far.

    I'm so happy for you that taking more fish oil was helpful! I know some people take large amounts of it for depression and for libido support. Some people have even weaned off their anti-depressants and switched to fish oil. (Under a doctor's supervision, of course.) Fish oil and dark chocolate increase dopamine levels in the brain, I am told.

    I don't like flaxseed oil for me, personally, because it's hard on my thyroid. I figure my thyroid gland has enough challenges already.

    Yeah, I respond to oils quickly, too. I think my lips are a great indicator of my "oil level".

    Hey, cct (Carron)!

    I am so glad to hear how things are going for you!

    I think I'm still in the phase of getting worse before getting better that many anti-viral treatments seem to have. Although I am getting some benefits from the Virastop, too. In my flattened state, it's encouraging to hear that you're feeling better.

    I have tried Zymactive, and I currently take EnzyPerfect. Both those things work like digestive enzymes on me, which is good. But they don't appear to affect my immune system in either a positive or negative way. I haven't ever tried the Wobenzyme N. I remember researching it at one point, and then deciding not to try it for some reason. Maybe I should revisit it.

    Maybe there is something about combining many different kinds of enzymes that is helpful. Or maybe if I took a lot more of the usual enzymes, I'd notice a difference. I wonder.

    I feel like the cold symptoms I have had are a good sign. I like to see my immune system doing something. I think it's been kicking things out, which seems good.

    Hey, CherylSue!

    Thanks for the encouragement! I will be able to add to your Nexavir thread pretty soon. I'm going to start with the weakest dose, also. My doctor said "Hopefully you'll be sensitive to it." when she heard the price. lol

    Thanks for writing back, everyone!
    Love,
    Forebearance
  8. Pianowoman

    Pianowoman New Member

    If anyone is thinking of trying Wobenzyme, Pro Health makes an almost identical and much cheaper version, Proenzyme P.
    They are both advertised to reduce pain and inflammation and they do that , in my experience. I have never considered them to be antiviral. Hmmmm!

    Kathy
  9. Forebearance

    Forebearance Member

    Ooo, thanks for the information, Kathy!

    Forebearance
  10. JolieLuLu

    JolieLuLu New Member

    I am fina lly gaining weight back. Ive gained 8 pounds. I have a goal of 22 more....maybe by the end of summer:)

    Probiotics and digestive enzymes have mad such a difference in the way my body absorbs foods:)

    im working on eating.....geeze!

    love and light,
    jolie

  11. Forebearance

    Forebearance Member

    Oh, that's wonderful news, Jolie!

    Something is going on with me this week. First I had the rash, which is getting better, then I had a sudden need for more Omega 3s, and now I am really tired. It's a good kind of tired, but it's very powerful.

    I think I had better get prepared in case I go through a period of time when I can't leave my home. This is just so weird! But good.

    Love,
    Forebearance
  12. cherylsue

    cherylsue Member

    It sounds like you have a wonderful doctor who's very cooperative and is up on the latest treatments. Are you sharing your research and presenting it to your doctor? That's what I'm doing with my local PCP. I assume you are NOT with an FFC.

    You mentioned subgroups. I fit into Dr. DeMeirleir's profile Group 1. Which one do you fit into? I have little (in the beginning) or no pain. Most likely an HHV6 brain inflammation. If you have muscle pain, we are probably in different groups.

    I'm on the lowest Nexavir gel, but am upping my dosage by just applying more gel. The pharamacist said I could do that. I'll run out faster, though.

    In just a week, I think it has helped 5-10%. How much more benefit I can expect, I don't know. I just have more stamina.

    Hugs,
    CherySue



    [This Message was Edited on 02/22/2007]
  13. cherylsue

    cherylsue Member

    I was wondering how you are doing. I'm so glad to hear that you've made some improvement. I was pretty worried about you.

    As I told Forebearance, I've made some minor improvement in the last week in Nexavir. There's no herxing involved. The only side effect is that you smell like a pig. No kidding.

    Hugs,
    CherylSue
  14. cct

    cct Member


    Both of the doctors that recommended Zymactive and Wobenzyme N advised me that if these enzymes are taken a couple of hours before eating, they act in a different way than when they are taken with food.

    When taken with food, they will act as digestive enzymes. When taken seperate from food, they act as a disease fighter.

    I read that Wobenzyme N is used to fight cancer. The doctor who recommended Zymactive said that he recommends this enzyme combination for his cancer as well as his chronically ill patients to assist them with combating their particular state of disease.

    I do not know how much of this is proven to be true. I just know what makes me feel better!

  15. cct

    cct Member

    Hi Lisa,

    If I fail to take enzymes at the right time and on the right days, my viruses become more active (sore throat, swollen glands, fever, etc.).

    The Virastop seems to assist in the supression of the viruses.

    Virastop has not made the viruses go away, however. And, if I indulge in foods or activities that activate the viruses (chocolate, over exposure to the sun, etc.). then the Virastop has very little effect on a viral flare-up.

    On a day-to-day basis, the Virastop does seem to help in keeping the little viral buggers in check.
  16. Forebearance

    Forebearance Member

    Hi, CherylSue,

    Yes, I'm sharing my research with my doctor. She's only up on the latest treatments if I tell her about them. So I do! I present an idea for a treatment, with studies or articles written by doctors to support my case, to her. She is open-minded about letting me try things. Yay!

    I'm pretty sure I'm in Dr. DeMelrleir's Group 2. I think he said it's the most common kind of CFS.

    My Nexavir gel will arrive next week. I'm really glad to hear about your increased stamina. I hope I can take the smell of it.

    Hey, Carron,

    That's very interesting info. I'm so glad that those enzymes make you feel better!

    Oh, I see. So the Virastop and other enzymes seem to keep your viruses at a manageable level. I wonder if there is anything that would be able to kick them out. Anything that you would feel comfortable taking, I mean.

    Hey, everyone,

    I've had terrible insomnia the past couple nights and finally last night at 3 AM I figured out that -- duh -- I needed some extra magnesium again. It did the trick.

    Love,
    Forebearance
  17. Slayadragon

    Slayadragon New Member

    I hate blood tests too. I have veins that a lot of people can't get on the first try, and I often pass out as a result. Dr. Guyer's phlebotomist is excellent and so I don't mind getting blood drawn there so much, but the idea of having to get blood draws every week when on Valcyte from someone here in Chicago makes me nervous. Amongst other things, of course.

    My emotional lability certainly has not gotten any better since starting the fish oil. Do you think the fish oil could be making it worse?

    It would be interesting to see the HHV6a/b tests, as well as lots of other tests. My insurance is good at paying for tests anyway. I wish I could say that maybe I've made a dent in the numbers since starting on the Famvir, but I'm not so sure.

    You and I started antiviral treatment at the same time, and neither of us seem to be getting better. How can you stand it?

    Best, Lisa


  18. Slayadragon

    Slayadragon New Member

    Interesting that you say that chocolate and exposure to sun activates the viruses. How do you know that? Are there other things that do that?

    I've found myself avoiding even the small amount of winter sun we're getting here in Chicago over the last month or two. i've been thinking that the reason is that my body needs as much sleep as it can get (and the sun makes me more awake), but maybe this viral thing is part of it.

    Glad that you're doing better.

    Best, Lisa

  19. Slayadragon

    Slayadragon New Member

    I am looking forward to your ImmunoSciences results. You're just the second person I've heard of (other than Swedeboy) who's had them done. The course of your illness (and the things that have helped) sound very much like mine (except those worrisome heart pains) and so I'm looking forward to comparing.

    It also will be good to hear about the Nexavir. The fact that CherylSue isn't herxing makes it interesting.

    I've tried taking extra magnesium at night, but the thing that seems to matter more for me is l-theanine.

    Best, Lisa

  20. cherylsue

    cherylsue Member

    Forbearance: You are starting Nexavir! What strength is your doctor starting you with? Are you on the gel? Will your insurance pay for it? I'm so glad that you are giving it a try. How long have you had CFS? Do you have remitting/relapsing kind? You seem like you are finally making some progress. Good for you!

    Lisa: Yes, I read a few times in my research that chocolate, nuts, and even corn can activate herpes viruses. Personally, I've noticed that chocolate can aggravate my CFS. I used to love it. In fact, it may have been one of the triggers in the present relapse. I won't go into details, but I binged on a homemade chocolate cake/icing that my daughter made. I haven't had chocolate since this relapse. I've lost over 20 lbs. I've been wearing my daughter's cast off clothes because mine are too big. I just don't feel like shopping.

    Strangely enough, Indian food and curry make me feel better. We went out to lunch today for a buffet at our favorite Indian place. I never tried it when I was younger. Now, I like it. It's an acquired taste.

    I looked up multiple sclerosis in Wikepedia. It seems to mimic CFS in some ways. It comes out in spring/summer and there are subsets as well with remitting/relapsing. I do get the burning sensations - peripheral neurapathy- but that is where the similarities end.

    Dr. P. did mention that I get an MRI during our first visit to rule out MS. However, he later said that he didn't think I had it. My CFS developed with a 103 degree fever/flu that put me in the hospital and on levaquin which I am allergic to.

    However, if I do have HHV6, which Dr. P. thinks I do, that virus is also implicated in MS. Same virus, just different manifestations and diseases.

    Therefore, I think Nexavir is my last chance for recovery.
    What type of recovery and for how long, I do not know.

    Best of luck to all of you.

    CherylSue