CFS: Forebearance's thread 43

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Aug 19, 2010.

  1. Forebearance

    Forebearance Member

    Hi all,

    Well, I'm still fighting the sinus infection that likes to hang out around my root canal tooth and gives me the occasional hive/acne bump. I've been taking Oregano Force by Natural Factors and it seems to help. The infection is still there, but it's subdued.

    I also ran out of my digestive enzymes one day and it took me a week and a half to get to the store to buy more of them. I have been taking them for years, just a good-quality general digestive enzyme called Enzyperfect. While I was not taking them, I began to feel a LOT more poisoned. It was alarming until I took one again and figured out that they must be very important for me. I had no idea how important they were! So I'm experimenting with taking more of them.

    I guess enzymes really do reduce inflammation.

    I still take and like the Virastop and Candidase, my favorite enzyme products.
    I hope to get back to doing Rich's simplified protocol someday, if I can ever get into a good living situation where I can afford to just lie in bed all day.

    The best news is that I got my XMRV test results back. I tested slightly positive for XMRV by serology (antibodies). What a relief!


  2. mbofov

    mbofov Active Member

    Good to hear from you! I haven't seen you post in awhile (although I have not been on the board much for several months myself).

    Where did you get tested for XMRV? How much did it cost?

    I imagine it is a positive thing you tested slightly positive (no pun intended ;D), although how do you test slightly positive? What exactly were the results?

    I can imagine it would be a relief - I haven't been tested, a money issue, but hope to whenever they get a test out there that Medicare will pay for.

    I take digestive enzymes and HCL daily. I don't know if I have inflammation problems but definitely have low stomach acid, and this does the trick.

  3. Forebearance

    Forebearance Member

    Hi Mary!

    How are you doing?

    I'm glad the enzymes help your stomach issues. I guess inflammation must be a major issue for me. Especially when I take things that get rid of viruses. It seems to cause an inflammation surge. That results in more symptoms of being poisoned.

    I was tested for XMRV by the WPI, by being a part of Dr. Gordon's study. He did a small study of some of his patients, to see if they had XMRV and what their symptoms were. I haven't seen the official study results yet. They probably have to write it up.

    Because it was a study and it was done at no charge to me, I am betting I will never get to see the actual lab report. I can't exactly be demanding of them.

    Yeah, it is a relief. I was sure that if XMRV causes CFS, I would have it. And since I take four natural anti-virals, I could understand that the XMRV might be squashed down somewhat.

    But what it probably means is that they still need better more accurate tests for XMRV.

    Remember when Dr. Judy (or someone) said that there would be a standardized, available through major labs, most accurate test by the end of the summer? Well, it's the end of the summer! Where is it??? lol

  4. mbofov

    mbofov Active Member

    I am stumbling along, I think I'm a bit better than before (dosing with d-ribose throughout the day instead of once a day, helps with energy), my immune system's a bit better I think in part due to that plus a good vitamina D3 softgel (5,000 iu) plus lots of CoQ10 (300 mg. day). I had testing done through Sarah Myhill in Great Britain last April, and it showed lots of things wrong, she put me in the 11th percentile of functioning ... I think due to my incessant crashing. She's the one who recommended 1/2 tsp. of d-ribose every couple of hours and the 300 mg. CoQ10 and a few other things.

    Read Rich's post, the one about the opening of the new WPI institute - he mentions there is supposed to be a new XMRV test available this week. Actually, there's lots of info in that post, it's worth reading.

    Interesting what you say about inflammation and feeling poisoned. That sounds to me like herxing, I seem to herx and detox at the drop of a hat, so maybe some of my symptoms are due to inflammation, when I thought it was herxing? I took some lemon balm a few months ago and it hit me like a truck and then I read it was antiviral. I hate herxing and detoxing.

    I don't think it would be pushy to just ask for your test results. They might be very willing to do it. And if they can't or won't, well, okay, but I would at least ask if you haven't already. I'd want to know what they were !

    And the NIH study's supposed to be published next week! I will believe it when I see it.

    Take care -

  5. Forebearance

    Forebearance Member

    I'm so glad to hear you're a bit better than before, Mary.

    Oh yeah, d-ribose and Co Q-10 are helpful to me, too. I should have written at the top that I've been experimenting with taking more Co Q-10. I"ve been taking 300 mg a day for years. Then I heard of a psychiatrist who gave a patient 1200 mg of Co Q-10 to snap the patient out of a depression. So I guess it would be safe to take more than 300 mg. But it's expensive.

    I'm currently on 400 mg a day. I got an energy boost at first, but now the effect seems to have calmed down. Hmmm. Maybe I'll try 500 mg some day soon.

    I'm also taking a tiny bit of D-3 every day. It made me feel awful at first -- irritable -- but now it's gradually making me feel better. I wonder if it may have been boosting my immune system and causing some kind of war in my brain.

  6. hensue

    hensue New Member

    Forebearance I wish you would post this on a seperate thread about being positive.

    It is not in our minds people like the docs and friends think.

    Take care and d-3 makes me feel bad I dont take it and the doc says I am deficient.
  7. ellikers

    ellikers New Member

    Have either of you tried taking it with a meal?? It might buffer the effects ...

    I haven't heard of D-3 causing negative effects like that! I took 2,000mgs daily for a couple of years and never noticed anything like that. Bummer!
  8. spacee

    spacee Member

    I think. I hope you have the time to lie in bed all day and get well!

    I have signed up for the XMRV tests. Old and new. Pricey. About $550, I think.
    They will contact me soonish.

    I'm eager to get back on the TF's that I stopped a while back. Wasn't sure they
    were as potent cause of being frozen for 3 years.

    If anyone cares what Cheney thinks (I do), he has his patients take 1,000 of Vit.D
    If I don't remember to take it on a trip, I sometimes catch something. Oh, heck, I
    sometimes catch something at the docs who knows. I am high in one
    of the D's and low in the other. Kinda like straddling a fence post..what do you do?

    I do get that poisoned will put your enzymes on the list. Rich told me
    to not to the protocol since I had scleritis of my eye.

    Enough about me. Glad you are making progress....whether you have it in hand or have proof!!

  9. Forebearance

    Forebearance Member

    Thanks hensue, ellikers and spacee!

    I don't stop by this forum very often any more, so I don't want to keep track of another thread besides this one, hensue. But you can tell people about my XMRV positive result if you want to!

    I had to start the D3 very, very gradually. Now it seems to be helpful to my immune system in fighting off things like my stupid sinus infection.