CFS: Forebearance's thread 55

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Aug 2, 2011.

  1. Forebearance

    Forebearance Member

    Hi all,

    Well, I took the tiny amounts of metafolin and Perque hydroxy B-12 for a week and a half, and then I became so profoundly exhausted that I couldn't take care of myself, so I had to stop.

    It did seem similar to what happened to me when I was taking Perque and Folapro. Except that then I was in a situation where I could take lots of naps and so I could cope better.

    The first dose felt good, so I think I need to try taking these supps once a week or so.

    I've been taking B-6 for more than a year, but I don't take a multi B vitamin so I don't get the other Bs except in fortified cereal and etc. B complex vitamins always seem to have something in them that conflicts.

    But I do take a ton of individual minerals, including manganese, selenium, zinc, potassium, magnesium, calcium, molybdenum.

    Am I doing something wrong, or is it just that I'm unable to handle the detoxing caused by helping the methylation pathway??? Argh!!!

    In other areas of life, this hot and humid summer is making camping very difficult. It's hard to sleep in this weather.

  2. richvank

    richvank New Member

    Hi, Forebearance.

    I'm sorry that this treatment has caused you to become exhausted. I think that the fact that it as some impact in terms of symptoms suggests that your methylation cycle does need some help. It's possible that your body is low in one or more of the cofactors that are needed by the enzymes in the methylation cycle and related pathways. Vitamins B2 and B3 are needed, as well as B6. It sounds as though you have the essential minerals covered. The other possibility is amino acids. Methionine and serine are particularly needed, as well as the ones that go into making glutathione (glutamine or glutamate, cysteine, and glycine).

    Sorry also about the hot, sticky summer.

    Best regards,


  3. mbofov

    mbofov Active Member

    Hi Forebearance - It's quite possible that you need more potassium. When I first started the metafolin, I felt great for a couple of days and then hit a wall, profound exhaustion, like you. If you read Freddd's posts on the PR board, you will find that he stresses over and over again the very sudden greatly increased need for more potassium on his protocol. He says it's due to the body suddenly starting to heal and make new cells and this greatly increases the need for potassium. Here's one link to a post of Freddd's:
    (which I have permission to post)

    After a couple of days of the exhaustion, I remembered what Freddd said about potassium. I started slowly with 2 or 3 99 mg. capsules a day, and worked up to 10 (1,000 mg.) in divided doses. My energy started to return by the end of the first day on the potassium.

    I tried potassium gluconate but found I tolerated potassium citrate better.

    This is quite possibly what happened to you with the Perque and Folapro.

    I haven't had any detoxing on Freddd's protocol, whereas with Rich's I never got past detoxing in 3-1/2 years, and it is possible that it wasn't actually detoxing, but an induced folate deficiency as Freddd explains.

    Also, there are B complexes now being made that have metafolin instead of folic acid. Douglas Labs makes one and also Pure Encapsulations so you might want to give one of those a try. Folic acid really seems to be bad for us in so many ways. I did another post with an article which talks about this and Rich talks about it too.

    Anyways, if I were you, I'd give the potassium a try. You won't get enough in your mineral supplement.


    [This Message was Edited on 08/04/2011]
  4. Forebearance

    Forebearance Member

    Thank you so much, Rich and Mary!
    I really appreciate you reading my thread and thinking about my problems!

    I finally decided to try taking a B complex vitamin, even though it had folic acid in it. At least it had B12 in the methylcobalamin form instead of cyanocobalamin.

    What do you know... it also made me very tired. I've never had that effect from a standard B complex vitamin before. My body just isn't acting like it normally does.

    I will try increasing my potassium, Mary. I have been taking just a standard amount of it. I take potassium asporotate.

    I do take L-glutamine, Rich. I will check on the other amino acids. I think I'll try stopping my B6 in case I am just out of balance, B-vitamin-wise.

    After experiencing a very strange profound exhaustion, and having trouble even camping, which usually gives me energy, I am starting to think that I may have picked up one of the co-infections from my tick bite. I'm pretty sure I killed the Lyme with doxy. But I am told that doxy won't treat the co-infections.

    Also, I have been experiencing burning sensations on my skin. Normally, I immediately look around for a source of mold toxins when that happens. But this time it isn't clear if the toxins are coming from without or from within. Argh!!!

    This is just throwing me for a curve. Things aren't behaving like they normally do for me.

    I'm going to take a pearl of Lauricidin every day to try to treat a possible tick bite co-infection. I just can't handle taking any more antibiotics. I know there are specific antibiotics for Babesia, Bartonella, Ehrlichia, etc. But there aren't any Lyme-literate doctors anywhere around me, so I can't get tested for those critters.

    Not that I want to get tested very badly. I really hate going to doctors and having endless rounds of blood tests.

    Lauricidin kills everything, so I'll just take that.

    It feels like maybe the skin burning and profound exhaustion may be symptoms of some critters dying and releasing poisons.

    [This Message was Edited on 08/12/2011]
  5. Forebearance

    Forebearance Member

    Man, I wish I could get the methylation protocol to work for me!
    It clearly has a huge effect on me.

    I stopped the Metafolin and B12 for about a week, and then tried them again this morning. One dose is okay. I feel good. But I know better than to take them again tomorrow.

    I guess I'll keep taking them once a week until I figure out what else I need. Maybe a B-complex without folic acid. Maybe individual B vitamins. Maybe more potassium.

    Mary, I did try taking double my usual amount of potassium, and it did seem to help a little bit.

    Then i decided to try taking more potassium to treat the sort of detox-y symptoms of increased inflammation that I've been getting from taking Lauricidin every day. What do you know, it did help!

    It makes some sense, now that I think about it, because potassium is what people take to normalize high blood pressure. So it also helped me when I was feeling inflamed and uncomfortable and my heart was pounding and I was having trouble sleeping.

    It's hard to tell if it is mold toxins coming from without or dying critters releasing poisons from within. Or detoxing of stored poisons! Geez!!! Bring on the soluble fiber!

    Hey, back when i was first experimenting with the methylation protocol, it used to help my detox symptoms to eat a bowl of high fiber breakfast cereal. But maybe it wasn't only the fiber that helped. Maybe it was the B vitamins they fortify breakfast cereal with. Hmmmm.

    I'm so tired of feeling poisoned and being fat, frumpy and frazzled.

    [This Message was Edited on 08/12/2011]
  6. mbofov

    mbofov Active Member

    If you get a chance, check out Freddd's posts on the PR board about metafolin and B12 and potassium. Like I said, I was up to 1000 mg. of potassium a day shortly after starting the metafolin and the B12. Without the potassium, I would have been bedridden. So I don't know what double your normal dose is, but you may need more. It is telling that it helped you with inflammaton from teh Lauricidin. Freddd's reasoning is that our bodies will suddenly start to heal and create new cells and we will have a sudden increased very real need for subsantial more potassium.

    So some of your symptoms may actually be symptoms of low potassium (including the pounding heart and fatigue).

    You also might consider trying methylcobalamin. Some people have trouble converting hydroxocobalamin into methylcobalamin. (read Freddd's posts)

    I'm now taking 400 mg. of potassium a day and seem to be doing okay. I'm taking one Douglas Labs B complex (with 400 mcg. of metafolin) plus an additonal 400 mcg. Metafolin from Solgar, plus about 7,000 mcg. of methyl B12 a day (sublingual) (including the dibencozide).

    I can't remember if I posted this to you before or not, but here's a link to one of Freddd's posts (with his permission):

    I know it's tough. I don't know why it's so hard, but it is although I think it's starting to get easier for me, I think I'm making a little progress, in general just doing better. One thing for sure, I do not have the detox symptoms on Freddd's protocol that I had on Rich's - I really think folic acid is bad for me and may have been causing a folate deficiency, symptoms of which again are feeling like crap and very tired.

    Hang in there! And check out some of Freddd's posts -

    [This Message was Edited on 08/12/2011]
  7. Forebearance

    Forebearance Member

    Thanks, Mary!

    I've read some of Freddd's posts, but not all of them. I got way behind on reading methylation stuff because I've been concentrating on mold avoidance the past couple years.

    I'll see how much potassium I get up to. I am making any changes gradually, because i tend to be sensitive to things.

    Methylcobalamin goes right through me without doing anything. So I stick to hydroxycobalamin, which has a big effect. Apparently my genetics are at least somewhat different from Fred's.

    I'm so happy for you that you are feeling better and making progress!

    Right now it seems like I need to get to a pristine place and sleep outside for a while. I've got to calm down my immune system. I'm in some kind of trap where taking Lauricidin makes me more inflamed, and not taking it also makes me more inflamed. I can't get off this ride!

  8. mbofov

    mbofov Active Member

    Hi Forebearance, I stumbled across something this morning that might help you with your inflammation. I started taking lemon balm a couple of days ago for what I believed was a viral infection and sure enough, within 36 hours started herxing rather badly. I stumbled across lemon balm as an antiviral many months ago by accident - I took it to help with sleep one night and the next morning woke up feeling like I'd been hit by a truck. I wasn't crashed, and it took me half a day to realize that it felt remarkably similar to herxing. I googled lemon balm and sure enough, it is antiviral and is supposed to especially effective against herpes viruses.

    Okay, so I've been doing Freddd's protocol, which is helping with energy, but I still crash just the same as always, only I feel better in-between crashes. So I thought perhaps a virus is causing teh crashing as I'm taking everything else under the sun for energy. And started the lemon balm a couple of days ago, and wham! herxing again.

    Okay, so this morning I felt crappy again and began to get depressed because it's almost too rough to take the lemon balm and then I did a little research and read on one website re autism that drinking lemon juice in water every 15 minutes might help iwth or even stop herx symptoms. So I immediateliy started drinking lemon water and within an hour my energy was picking up, I started to feel human again, so I took another lemon balm. I feel a little crappy right now but not bad, and am going to continue the lemon water throughout the day. I'm really hoping it will let me keep on taking the lemon balm. Whew!

    So this sounds a little similar to me what you are going through with the lauricidin. Are you taking it for antiviral properties? I think lemon balm is more potent as I took lauricidin before and had no reaction at all.

    Anyways, you might try the lemon juice. I googled it and sure enough it's good for inflammation, and relieving herxing it seems, so it might help you.

    I'm going to see how I do in the next several days and if things go well enough I'll do a post about both the lemon balm and the lemon juice -

  9. Forebearance

    Forebearance Member

    That's interesting, Mary!

    I'm really glad that you have figured out something that works for you!

    The lemon juice in water sounds like it might be sort of similar to the apple cider vinegar in water that I take to stimulate my gall bladder. I take it every night of a day I've taken Lauricidin. it keeps the toxins generated by killing critters moving on through and out.

    I take Lauricidin for the antiviral and antibacterial and anti-fungal qualities it has. it works really well for me. For me, it is.really strong.

    it turned out that it was either my hotel or something in the outside air in the neighborhood of my hotel that was bothering me. When I got away, I felt better. Sometimes I'm a little slow to face up to a place that was good going bad.

    But I'm also cutting back to one pearl of Lauricidin every three days, like usual. If I have some kind of coinfection, it's just going to have to be killed off gradually.

    [This Message was Edited on 08/22/2011]
  10. Forebearance

    Forebearance Member

    Hey, Mary,

    I remembered that back when I lived in my moldy apartment, I used to drink lemon water all the time. It wasn't strong. It was just like lemonade without the sugar. Maybe it helped me survive. I'll try some again!