CFS: Forebearance's thread 53

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jun 7, 2011.

  1. Forebearance

    Forebearance Member

    Well, life continues with the good old enzyme products Virastop and Candidase.
    I had a finger infection and was prescribed antibiotics, so I decided to increase my Virastop to one a day during this time to see if I could finally vanquish the infection that lives in my head.

    I'm not sure if it has worked, but maybe it has helped some. This dumb infection was something I picked up maybe five years ago. It lives in my jaw most of the time and is dormant except for picking on the roots of my teeth that have had crowns done on them. But when I have some kind of immune challenge, like I catch a cold or I stay in a place with a fair amount of mold toxins, this critter sees an opportunity and jumps into action, moving into my sinuses. It would sure be nice to be rid of it.

    It seems like a long time since I took methylation supplements regularly. I took them every day for a little over two years and the effects of taking them lasted for about a year and a half after I stopped taking them.

    Now finally the effects are wearing off. My motility is slowing down, my sleep is less good, my hormones in general seem lower. I thnk it is time to start taking methylation supps again.

    So I started with my usual combo of Perque hydroxy B-12 and Mae's Superberry Chews (for the folate). I am finding that the folate makes me really sleepy and tired. It really reduces my capacity for doing things. So in the last few days I've been taking just the B-12. It seems to give me some of the benefits I've been looking for without the super tiredness.

    Just reading mbofov's comments on another thread here, it sounds like there may be developments and changes in the methylation protocol that I had better read up on. No matter what changes, though, I am not giving up the hydroxy form of B-12, because it works a million times better for me than the methyl B-12.

    I'm continuing to lead a nomadic existence, staying in hotels while I look for either a trailer to make or buy or a decent place to rent. I can't always manage to get in an afternoon nap, which the methylation supps cause me to need. We'll see how it goes.

    A while ago I had the chance to look at a 2011 model of the Camplite trailer. It seems that they have fixed the problems with the bathroom: the toilet was centered and a less stinky kind of glue was used to assemble the bathroom. But there is still something in those trailers that bothers me. After sitting in it for a couple hours, I got the heebie geebies again. It may just be the mattress and upholstery, but I'm not sure.

    It's scary to spend $18,000 on something that may or may not work out. Plus the windows are still quite cheap. The salesperson accidentally knocked one out and it fell on the ground. Luckily they are acrylic windows!

    I built one custom trailer which didn't work out. It ended up that one of the materials used in it bothered me. So I'm trying to sell it so I can use the proceeds to build another trailer. Sigh. It's a lot of going back to the drawing board.

    Forebearance[This Message was Edited on 06/09/2011]
  2. mbofov

    mbofov Active Member

    I stumbled across postings by Freddd on the Phoenix Rising board about using methylfolate (or Metafolin, trade name) in place of folic acid and folinic acid. Freddd found from his own experience that regular folic acid and other forms of folate (except for methylfolate) paradoxically caused a folate deficiency, leading to fatigue and other unpleasant symptoms. He also found that methylcobalamin was, for him, the most effective form of B12.

    I had tried Richvank's protocol for 3-1/2 years, off and on, had to keep stopping because of the fatigue and digestive upset which I thought were detox reactions, but Fredd believes they are actually symptoms of induced folate deficiency. So I stopped Rich's protocol several weeks ago, and started Freddd's, and have had NO detox type symptoms using the methylfolate. I'm using Solgar brand methylfolate (metafolin) and again, no bad side effects. I also do the methyl B12 (sublingual and shots). Also added a form of B12 called dibencozide (Source Naturals brand), and carnitine fumarate (in place of l-carnitine or acetyl-l-carnitine).

    Since you're having such good results with the hydroxocobalamin, I'd stay with that but seriously consider stopping the superberry chews and trying methylfolate (again, Solgar makes a good one), and adding in the dibencozie.

    My energy has been better, I've had hours (not quite days yet!) of feeling almost normal. I still crash but hope that may subside if my body is healing.

    Freddd found it was very important to cut out all folic and folinic acid (e.g., check your multi or B complex to see what it has) and l-glutathione and n-acetyl-cysteine, which, again, paradoxically enough, he found induced folate deficiency. So I'm just doing what he did, and having good results. There are couple of B-complex products that do have methylfolate instead of folic acid (folic acid is synthetic anyways)

    Here's a link with more info:

    Oh my - you have a lot going on with your trailer. Maybe if your methylation gets sorted out some other problems will as well?

    Take care -


  3. richvank

    richvank New Member

    Hi, Mary.

    I'm glad to hear that you are continuing to do well, and I hope you will keep posting your results. Freddd's protocol does seem to be helping quite a few people, and I think that's wonderful!

    On the other hand, I continue to hear from some others who write that the simplified protocol I've suggested is the best thing for them since sliced bread! And of course, it did help over two thirds of the people in our clinical study significantly. And some people say that they don't do well on methyl B12 and have switched to hydroxo B12.

    As you may know, in the full treatment program of Dr. Amy Yasko, from which I extracted the simplified protocol, genetic testing is done, and based on the results, a decision is made as to which form of B12 would be best. In simplifying the protocol to lower the cost and complexity, the genetic testing was one thing I eliminated. Based on your experience, I'm now suggesting that people try the simplified treatment for two months, and if it doesn't seem to be helping, consider trying methyl B12. I still think that there are some down sides to high dosages of methyl B12, so I am suggesting that people start low and work up on the dosage of it as tolerated.

    It looks as though the cost of characterizing SNPs has been coming down (such as at so maybe more people will be interested in getting their saliva genotype panel run, and that would likely help in choosing the best form of B12.

    Anyway, I hope things continue to go in the right direction for you.

    Best regards,

  4. mbofov

    mbofov Active Member

    I think the most important things for me were to stop taking all of the following: folic acid, folinic acid, l-glutathione (which I was taking in capsule form), and NAC, all as Freddd recommended.

    And then I started taking Freddd's recommended supps: methylfolate (Metafolin by Solgar), methylcobalamin (I was already doing methyl B12 shots but added in some sublingual B12), dibencozide by Source Naturals and carnitine fumarate (instead of l-carnitine or acetyl-l-carnitine). I would try anything, just about, to try to get my life back, and it seems this is starting to pay off.

    I know that folapro is methylfolate, and now I may just have a mental block against it because I had such a rough time with the original methylation supplements, so I'm sticking with the Solgar metafolin (methylfolate) product.

    Also, I'm guessing the dibencozide is helping as well.

    So it's not just the methyl B12 that's making a difference, because I've been doing methyl B12 shots for several years with no noticeable benefit (although perhaps they helped prevent neuropathy?)

    I know you've now eliminated folic acid from your protocol, although I think the multivitamin you recommend does have folic acid.

    Anyways, I'm really glad to hear that you're now recommending people give methyl B12 a try if they don't respond well after 2 months on your protocol, but I think it would be good to give them the full details of Freddd's protocol as well: cutting out folic acid, folinic acid, l-glutatione and NAC, and adding in the dibencozide and carnitine fumarate, as well as Metafolin and methyl B12. I can't say for sure what is helping me the most, and some time in the future I may play a little with this, but for now, I'm just glad to be doing better and don't want to mess with success.

    Best wishes,

  5. Forebearance

    Forebearance Member

    Hi Mary and Rich,

    After I took just my usual tiny speck of B-12 for several days without the folate, I began to feel really poisoned, as if toxins were being loosened up but not excreted. Sigh. So I went back to taking the folate.

    Thanks for the link, Mary. That is the thread I'd like to read, as well as others, to get caught up on things in the world of methylation. I would certainly try the Solgar methylfolate to see if it makes a difference for me. The next time I'm near a health food store, I'll get some.

    I've never been able to tolerate L-glutathione and NAC, so maybe Freddd's experiences with folic acid might apply to me. I don't take any multivitamin, so I don't worry about more folic acid. Plus, it would be WAY too dangerous for me to take a bunch of folic acid. I've never forgotten the experience of detoxing too quickly that happened to me in the first month.

    The other form of B-12 you mention, the dibencozide, would probably be an overdose of B-12 for me. I'll wait on that. I didn't have good luck with L-carnitine, so I'm not in a huge hurry to try the carnitine fumarate. Maybe I will later.

    But regardless, I'm so glad to hear that you are feeling better, Mary!

    Maybe I'll order a new bottle of Folapro, if that is still what you recommend, Rich. I'd better get to reading the old threads.
    I've done the 23andme genetic test, Rich. Can you tell me where I should look to figure out what kind of B12 is best for me? (even though I think I already know)

    [This Message was Edited on 06/09/2011]
  6. Forebearance

    Forebearance Member

    I can't believe it!
    I got bitten by a tick. And there is a bullseye rash around the bite.

    Back on to Doxycycline. My digestive system was just starting to recover from the last round of it, which was for an infected finger.

  7. mbofov

    mbofov Active Member

    #*$(%* is right! It ain't fair - the only good thing is you know what to do about it ....

    Have you tried Symbiotics Lactoferrin with Colostrum Plus? Besides helping the immune system, it's supposed to be really good for the gut, many say better than probiotics. I've been taking it for a couple of months now and like it.

    Take care -

  8. Forebearance

    Forebearance Member

    Thank you for the sympathy and the suggestion, Mary!
    I appreciate it.
    No, I've never tried that product you mention. I'll look it up.

    I've been Herxing like crazy today. It feels awful. The tick bite only had a four day head start before I began the doxy. Geez.

  9. Forebearance

    Forebearance Member

    Okay, the Herxing is a lot better by today.
    I wish everybody who has Lyme Disease could have caught it four days after the tick bite.
    But even then, it's no picnic.

  10. grnwoodtree

    grnwoodtree New Member

    ...these threads that you've been posting -

    I've been sick for 8 years, getting worse, and finally received a positive test for one of the nasty viruses, along with more auto-immune -

    I am intrigued and happy to find your threads because I also cant do pharmaceuticals, too many side effects, and I go the natural route - albeit a bit hardcore at times.

    Since I see that Valcyte, the only successful drug to kill my virus, is also life-threatening for someone like me, my husband and I decided against it, although I am anxious to make headway. Regardless, we are going to start me on Virastop and AHCC - one to kill the bastard and the AHCC to keep growing new white blood cells.

    I also plan on eliminating all sugar except for fruits and occasional chocolate from my diet, upping my coconut oil intake, and after reading your posts from as far back as 2007, add in a daily gentle detox tea by Flora based on that Native American tea (name escapes me now!). I also take high dose fish oils (not consistently though!) and high dose mixed probiotics.

    I have been on many supplements now for years, and had no idea what works, what doesnt since I had no positive test results until now...I was laughing for joy to find out I was positive, yet now I am dismayed that I cant take the pharmaceutical that would kill it.

    Anyway, I like and appreciate the process you have been going through, and I have hope now that I see that Virastop and life-style changes will work. You definitely worry me about the molds though, because I was tested sensitive to the majority of them, and the cillins in particular. I hope this doesnt boil down to the boy in the bubble syndrome.

    I also have recently been experimenting with Dr Sinatra's heart protocol for Mitochondrial Dysfunction (the awesome foursome) - I have mixed feelings about it since Im still adjusting to a newly compounded thyroid formulation - all in all I think its beneficial, but as you wrote about, my heart is sensitive it seems at this point, and I must be careful, especially since I gained so much weight from not exercising...

    My biggest and fondest wish is to be able to exercise and lose weight again...please tell me you think thats possible..I was a runner and a weight lifter when I got sick - in the best shape of my life! Now im a morbidly obese weakling...

  11. Forebearance

    Forebearance Member

    Hi Holly! It's so nice to meet you.

    Wow, you went all the way back to my posts from 2007! Cool.
    I keep on doggedly posting these journal threads, whether people reply to them or not. lol

    I wish you all the best with your Virastop and AHCC protocol. I hope it does great things for you. I'm glad you are thinking about the detoxing side as well. Whenever I am killing something, I always have to think about detoxing the byproducts that result.

    I hope your new thyroid med and heart supplements go well. I can see how it would be challenging to be experimenting with both at once.

    I hope that you will be able to exercise and lose weight again! I do believe it is possible.

    You probably noticed from reading my threads that I was going along like a typical CFS patient for years when I became aware of the mold poisoning issue, and that really changed my life. Or threw me for a loop, you could say.

    But now that I'm going to all these lengths to avoid mold toxins, it looks like I will be able to start up the methylation supplements again soon, and those make me lose weight like crazy. They are great for fixing the endocrine system.

    I've got to go start a new thread now!

    [This Message was Edited on 07/06/2011]
  12. Mikie

    Mikie Moderator

    Probiotics or some other product which helps balance the good bacteria in the gut with the bad. Herxing can be so harsh, even with gut supplements. Hope you are feeling better.

    Love, Mikie
  13. Forebearance

    Forebearance Member

    Thank you, Mikie!
    I've been eating a lot of that yogurt that has extra probiotics in it.
    As well as taking my usual anti-yeast things, like Candidase, Capryllic acid, Lauricidin, Colloidal silver, Oregano Force. Do you think that's enough?

    I can't wait for your peptide experiment to begin.