CFS: Forebearance's thread 65

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jun 2, 2012.

  1. Forebearance

    Forebearance Member

    Hi all,

    Well, about two months ago my knee started hurting, as I wrote. At the same time, my GcMAF had pretty much totally expired and wasn't doing anything for me any more. I was also increasing the amount of Vitamin D I took. (I'm up to like 500 iu)

    So then a month ago it seemed like my tick borne infection from last summer was flaring up, and I found out my thryoid function was really going downhill. And my knee pain was getting worse and worse. Like arthritis, except it was spreading.

    The pain spread up and down my leg and felt like it was trying to paralyze my muscles. Then it began to spread to other joints. Finally it dawned on me that it might be fibromyalgia! Man, that stuff really hurts.

    I thought about it a lot and realized that I had stopped taking my methylation supplements two months ago, when I began all that traveling. The reason was that they made me extra tired and I didn't feel I could afford that.

    So I theorized that maybe the fibro pain was being caused by a back-up of toxins inside my body. The toxins might be coming from the tick borne infection, or from killing off the tick borne infection with doxy.

    Another clue was that I was not excreting like I should. Nowhere near the three times a day that is helpful while detoxing. I know that methylation supplements really move things through the digestive system.

    So I tried taking some B12 and Folate again, and sure enough, the pain started to recede in about half an hour. Whew, what a relief. I was barely able to walk up and down stairs or get up out of a chair. I felt like I was about 90 years old.

    My sympathies really go out to those people with fibro.

    So now i've been on doxy at 300 mg a day for three weeks, and methylation supps for about a week and things are getting better. The pain is gradually receeding. My brain is better. The ring rash site is calming down. I'm increasing my Armour thyroid and Vitamin D as quickly as I can.

    It seems like correcting a Vitamin D deficiency is changing my physiology. I'm needing more thyroid, and am able to tolerate the methylation supplements a lot better than I used to be able to. In fact, the B12 and Folate actually give me energy now, instead of making me more tired. They are finally working on me the way they are supposed to work! woo hoo!

    So for a while there I thought my health was falling apart. Now I am relieved that things seem to be improving again. I am about to order more GcMAF, which will be a relief too.

    I'm hoping to spend the summer in the Rapid City area, because there are a lot of campgrounds around there. But I had to temporarily bail out and hole up in a hotel while I get this tick infection sorted out.

    In the meantime, my car is in the shop because it got hailed on and it also seems to have developed mold growth in the air conditioning system. I can feel toxins blowing on my feet while I drive and it is wretched. I need to trade it in or get it really cleaned.

    Thanks to a fellow patient for the tips on which parts of car air conditioning systems go bad! I bet that mold spores were blown into the evaporator when I had my a/c ducts blown out. Never, never have your car's ducts cleaned by blowing air through them (if you are a moldie). I learned that the hard way.


    [This Message was Edited on 06/02/2012]
  2. mbofov

    mbofov Active Member

    How interesting the B12 and folate made your pain recede - don't forget you may need extra potassium with them! It could be that low potassium was the cause of your fatigue when taking these supplements before - or it could be low vitamin D etc. But I will never forget the wall I hit after 3 days of taking methylcobalamin and folate - complete exhaustion and it was caused by low potassium, which I had been forewarned about by Freddd of Phoenix Rising.

    My doctor has me on a high dose of D3, trying to get my levels up to 75, and I notice a difference, am kicking bugs faster, my immune system just works better. I am sure it helps all kinds of things.

    Good luck with everything and all your journeys!

    Best wishes,

  3. MicheleK

    MicheleK Member

    So happy to hear you are feeling improvements.

    Thank you Mary for mentioning the potassium connection. I am on the methylation protocol and did not know this though I take 20meq's of potassium every day. So maybe I had enough in me so as not to experience more fatigue.

    I haven't really noticed anything yet when I take them. I will give them a number of months to see if I get improvement. I too take higher levels of Vitamin D3 and definitely notice a difference from that.

  4. Forebearance

    Forebearance Member

    Hi Mary and MicheleK,

    Thanks for reading my thread and writing me!

    I do remember the potassium, Mary. I have experimented with it a lot and I think I have that under control. It also seems like I might need more magnesium these days. Maybe taking Vitamin D is causing me to absorb more calcium, so I need more magnesium to balance it out.

    I find that I have to keep my main mineral supplements carefully balanced. They affect my ability to sleep and whether my muscles hurt. If I have too much magnesium or too little, I seem to start to get fibromyalgia.

    I hope the methylation supplements will do something good for you, Michele! Things affect me really quickly, but I remember other people needing a few months to feel the methylation supps doing something.

    There is gobs and gobs of simplified methylation protocol information on this forum. But it's all in the past years, so you would have to search to find it.

  5. Forebearance

    Forebearance Member

    Oh yeah, I forgot to say that I finished 4 weeks of doxycycline 300 mg a day, and during the last week I added Azithromycin to that at 500 mg a day for 5 days. Whew. That is a lot of antibiotics.

    I hate taking antibiotics, but luckily my MAF878 starter just arrived, so I can mix up that yogurt and start helping my gut get back to normal by using it.

    If the MAF878 yogurt doesn't work well on me, I will have to order more of the injectible GcMAF, which is expensive. But it is really helpful.

    My knee pain is gradually getting better, but it's not gone yet. I still don't know quite what happened. It seems like I spend a lot of time just trying to figure out what the heck is going on.

    Fore[This Message was Edited on 06/15/2012]
  6. Sansofpa

    Sansofpa New Member

    After reading your posts, I'm wondering if anyone has had adverse
    affects from Vitamin D supplements. I'm deficient; 8.

    I began taking 10,000 iu 6 weeks ago and was very nauseous.
    It was changed to 5,000; still didn't feel too well.
    I then started using 1,000 and didn't feel too bad.

    I picked up a lab slip yesterday to have my bloodwork redone.
    I didn't notice the test ordered was for Vitamin D-3 levels and
    me are normal. It's the Vitamin D that was very low, so I'll
    be calling my doc on Monday to see if he realizes what he
    ordered, and why.

    Happy to hear many of your are making benficial adjustments
    but as you say, for many issues, it is really hard for me, too,
    to figure out what's going on, and why???
  7. Forebearance

    Forebearance Member

    I sympathize with you, Sans.

    I hope you can figure out whether you actually need any D3 as a supplement.

    They say that D3 acts like a hormone in the body, and I know it is important to make any changes in hormones gradually. So that's why I have been so careful in increasing it.

    That's a good question about adverse reactions to D3. Have you tried searching past threads?

  8. Sansofpa

    Sansofpa New Member

    I had my bloodwork drawn today for D. The lady at the lab said it will produce results for all three D levels.

    My D3 is normal; I'm deficient in D.

    My doctor said some people can't tolerate the higher doses of many
    vitamens and to take them only with food, but nothing high in acid
    and not with fruit. He suggested a tablespoon of oatmeal made with
    water because I have issue with lactose. He acutally said to try the
    oatmeal with all of my meds because no matter what I take, I either
    get nauseous or get terrible stomach pain.

    I could not take hormone supplements after my radical hysterectomy.
    That's interesting about D3 and hormones.

    When I get my results, I'm curious to know if I need to take D forever.
    If my results have risen enough, I must go for a bone density test
    because premlinary findings indicate osteopenia/osteopenic bones; even
    though my whole body bone scan was normal.

    Well, take care and thanks for the info,

  9. Forebearance

    Forebearance Member

    Hi Jam!

    Oh you know, I have some K2 kicking around somewhere. I tried it once and quit because it didn't seem to do anything for me. But that was before I began increasing my D3. I'll give it a shot again. Thanks!

    Yes, I take GSE. I like it a lot.

    Good luck with your bone scan, Sans!

    I recently heard Dr. Oz say that Strontium was important for bone health, so I've been trying that. He said to take it away from calcium.

    [This Message was Edited on 06/20/2012]
  10. Forebearance

    Forebearance Member

    Hi Jam,

    I think maybe when Sans says D, s/he means D2.

    It makes sense that strontium would cause constipation, because it may cause a person to absorb calcium better, and calcium can cause constipation if you don't have it balanced with magnesium. So taking strontium might mean a person would need more magnesium.

  11. Forebearance

    Forebearance Member

    A couple days ago I licked a tiny bit of the MAF878 yogurt off my stirring spoon, just to see what it tasted like. It was probably less than a drop.

    That night, I woke up at 3 AM feeling bad. The next morning (yesterday) I felt really bad. I had flu-like symptons of extreme fatigue, aching muscles, sinus pain, cracking and popping noises coming from my joints, and fever with chills and sweats. It was really unpleasant. I think maybe it was a Herx reaction.

    Today I still feel almost as bad. I'm a little less chilled. More sweaty. My muscles are still killing me, and there seems to be a war going on in my sinuses. But I woke up with no pain at all in my knees!

    I suspect that this stuff is better at killing off tick-borne infections than all the antibiotics I've taken. I suggest that people with Lyme disease try it.

    Meanwhile, if I survive this, I will have to figure out a way to take less. Maybe I'll have to use the end of a toothpick.

    But this experience still isn't as bad as I felt when I overdosed on methylation supplements.