CFS: Forebearance's thread 54

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jul 4, 2011.

  1. Forebearance

    Forebearance Member

    Hi everyone,

    Well, my tick bite has cleared up and it felt like the microbes it gave me were killed off within a couple days on antibiotics. But I am still taking doxy according to Dr. Burrascano's recommendation: at least 300 mg a day for four weeks. With spikes of 200 mg at once.

    The doxy may be killing other things by now. Who knows? I hope I have some kind of digestive system left after this. I really liked my native biotics. I wonder if they will be gone forever.

    In methlation news, I ordered some Solgar Metafolin to take instead of FolaPro. So far it seems like it might agree with me better. I am still feeling the good effects of supporting methylation, but I am feeling more energy instead of feeling more fatigue. Wouldn't that be wild if the different brands of folate made a difference? I would believe it, though.

    However, taking methylation supps seems to make me more senstiive to mold toxins, so I will wait until I start sleeping in a tent to take them every day. I think I can make some good progress at getting well by sleeping outside this summer and taking more Lauricidin and mushroom extract and the methylation supporting supps.

    I also bought some egg yolk lecithin, which agrees with me fine! I wish I had known years ago that I could take that instead of the phosphotidyl serine or choline.

    Naturally, detox headaches came with the methylation supps so I had to remember to take moly for those. I've been taking manganese for years now, so no change was needed to add that back in.

    I bought some PGX powder to try sometime. Previously I had tried some PGX capsules, but they were too strong for me. They brought my digestive system to a screeching halt. So I need a way to take smaller amounts of the powerful soluble fiber they contain. It sounds like it would be great for detoxing purposes.

    Otherwise, life is good. I found a place with decent outside air and decent amounts of civilization, so I am happy. Now if the WPI would just come up with some kind of effective treatment by the fall, it would be really helpful.

  2. TigerLilea

    TigerLilea Active Member

    >>>The doxy may be killing other things by now. Who knows? I hope I have some kind of digestive system left after this. I really liked my native biotics. I wonder if they will be gone forever.<<<

    Do you still have your appendix? In the past medicine didn't think the appendix served a purpose, but now they believe that it is the appendix which repopulates the intestines with good bacteria when supplies become low.

  3. mbofov

    mbofov Active Member

    Glad to hear the doxy is working on the tick bite microbes!

    You know, I have the same feeling about the Solgar Metafolin vs. Folapro. I do know when I stopped all of Rich's methylation supplements, including Folapro, Actifolate and the multivitamin (which has folic acid and NAC), my "detox" symptoms (fatigue and screwed up digestion) stopped almost immediately, and my energy has improved using the the Solar Metafolin. I know that theoretically Folapro and Solgar Metafolin are supposed to be the same thing, but I have my suspicions too. It could be just psychological, after having such a rough time for such a long time, I don't want to go near any of those supps. But one of these days when I am feeling well enough I am going to try an experiment and take a quarter tab of the Folapro and see what happens. Solgar is cheaper than Folapro anyways.

    So you'll be camping this summer - I'm a little envious! I used to love to go camping. I hope all goes well for you -

  4. Forebearance

    Forebearance Member

    Hi TigerLilea and Mary!

    Wow, that is fascinating about the appendix. I still have mine, so maybe there is hope!

    That is really good to know that you feel a difference between the Metafolin and the FolaPro. I hope this will really help me like it has you. Hey, you are welcome to pull up a tent next to mine! Camping while sick is pretty.challenging, though.

    Thanks for the good wishes.

  5. mbofov

    mbofov Active Member

    I think my post might have been a little misleading. I'm not sure if the Folapro was the reason I felt worse on the simplified methylation protocol. I stopped all the other supps at the same time too, a couple of which had folic acid in them, and one of which had NAC. According to Freddd on the PH board, folic acid and NAC paradoxically induce folate deficiency in many people, and I think I'm one of them. And it is folate deficiency symptoms which many people mistake for detoxing. So I'm just not sure about the Folapro, but don't want to take any right now in case it was part of the problem. Some time I will do a little experiment just with the Folapro and see how I react, but not yet.

    I can't imagine camping while sick - challenging sounds like a good word! I know I couldn't do it right now. But I'd love to go. We used to go to the eastern Sierras in California, actually we camped all over the state. I'd take camping over a hotel room any day!

    Take care -

  6. Forebearance

    Forebearance Member

    Thanks for the clarification, Mary.
    Please don't do your FolaPro experiment for my sake. I'm just glad you're feeling good.

  7. grnwoodtree

    grnwoodtree New Member

    I was thrilled to see you had answered my post in thread 53, so had to find you next thread :)

    After 12 days on ViraStop, my brain is beginning to clear!!! I'm so thrilled, it's incredible. Granted it only lasts for a few hours in the morning...but I am also seeing that my morning energy, no matter if I only have 6 hours sleep, is back as well. Definitely not like my old self, but Im able to walk a little bit without heaving and gasping for air.

    I tried stopping the Sinatra protocol for a couple days and it was terrible! It's like looking in a mirror at my old self and saying - wow, that was pretty awful. So Im also still staying on the Awesome Foursome regime 2X a day.

    I've definitely got other issues, and I think it's the food sensitivities issue - avoiding the sugar has made me want cheese as a substitute. I you think this is Candida??

    I made a friend who swears I need to do a different type of Lyme test - can you recommend the best one so I can tell my Dr?

    Im glad to see you've found a place to live that is not trying to kill you. How are your fatigue levels and brain function? Are you just amazingly better than say 10 years ago???


  8. Forebearance

    Forebearance Member

    Hi Holly!

    I'm so glad to hear that the Virastop is working for you.
    I hope you will keep feeling better.

    I don't know much about Candida and Lyme tests, but there are lots of people here who do. There are many threads on Candida. There is a whole Lyme forum. I think I've heard them talking about the Ingenex test.

    Compared to 10 years ago, I have noticeably more energy. I'm not near being well, though. My brain function is close to being back to normal, except for when I'm iin the presence of mold toxins. Then I start forgetting words and losing my train of thought and losing concentration.

    The biggest hurdle I have brain-wise, is that my eyes get tired quickly so I can't read a long time like I used to be able to. But then, I probably need reading glasses!

    peace back,

  9. Forebearance

    Forebearance Member

    Say everyone,

    When I was in my third week of doxy, 300mg a day, I started getting feverish. I had a low grade fever for about a week. Finally I realized that the doxy might be flushing something out that my immune system was having trouble killing.

    So I decided to increase my Lauricidin to one pearl a day. I know that it actually kills microbes. it seems to be helping! My fever has gone down.

    Lauricidin has saved my hide before in tough situations. The downside is it makes my reactivity to mold toxins go up. Now every little poisoned thing is bothering me.

    I'm already taking one Virastop and Candidase a day, and I don't want to increase those.

    in the methylation department, I'm nibbling a small speck off of two pleasant-tasting pills every day. it couldn't be easier. And the egg yolk lecithin is easy to add to my routine.

    [This Message was Edited on 07/19/2011]
  10. Mikie

    Mikie Moderator

    I've been off and on the Doxy for mycoplasmas for years and when there is a big dieoff, there can be a Herx. Sometimes, my temp will go up when this happens. Also, just taking ABX will sometimes stir up the pathogens and the immune system will finally take notice, producing an immune reaction, including a fever.

    Best of luck to you.

    Love, Mikie
  11. Forebearance

    Forebearance Member

    Thank you Mikie!

    The Lauricidin did work to get rid of my fever. It made taking the doxy bearable.

    Today is my last day of doxy! Hurray!!!

    I think I will continue taking one pearl of Lauricidin every day and see how things go.
    It is the most powerful thing I take, and I know it could do a lot for me if I could stand to take more of it. Maybe now that I'm sleeping outside I will be able to handle the increased toxin reactivity it causes.

    Although, I have been retreating to a hotel lately because of the beastly hot and humid weather. It's been too hot to sleep in a tent. I feel sorry for the people on the East Coast when this hits them.

    [This Message was Edited on 07/19/2011]
  12. Elisa

    Elisa Member

    Hi Forebearance, Mary, Mikie and everyone!!!!

    I was so happy to see your thread. And my heart absolutely lifted and brightened up when you said you were happy - I am happy you are doing better and hanging in there...

    I was on doxy for years too - for mycos like Mikie - mainly in the lungs. Then the fever hit for 4+ yrs - then I found Vit D3 spray (bypassing gut issues). The D3 keeps the fever just under control - but if I let up, WHAM, it comes back.

    I am very weak and scared lately - that aweful dying feeling - I'm mainly sleeping - like in a coma - not sure what to do. It's really hard to know sometimes.

    Anyway, just so happy to 'hear everyones" voices - miss you guys.

    Take Care and God Bless,


    PS I am praying everyday for everyone with my FB group- at 9PM EST - now for over a year - as part of (shameless plug) the collective prayer group I put together on Facebook called "The Daily Worldwide Prayer for ME/CFS/FM." I hope that God will heal us all!

    [This Message was Edited on 07/19/2011]
  13. Forebearance

    Forebearance Member

    Hi Elisabeth!

    It's so good to hear from you.
    I hope you are hanging in there, too.
    Thank you so much for the prayers.

  14. Mikie

    Mikie Moderator

    I'm so sorry you've not been feeling well. I pray for all of us every day because we face such challenges in our lives, trying to effect some healing.

    I'm Herxing today, so the Doxy is definitely causing some kind of big dieoff. It's like it never ends!

    My hugs, love and prayers to everyone.

    Love, Mikie