Mikie - Question For You!

Discussion in 'Fibromyalgia Main Forum' started by Elvira, Jan 20, 2003.

  1. Elvira

    Elvira New Member

    Hi Mikie,

    I was reading another post on antibiotics and meds, and the person stated that you had gotten better on ABX. Can you tell me what meds you are on and the dosages?

    Thanks,
    Anita
  2. Mikie

    Mikie Moderator

    I am taking 100 mgs. of Doxycycline twice a day for the chronic mycoplasma infection. This is the dose recommended by Dr. Garth Nicolson, the father of mycoplasma research in Gulf War Illness and lots of other conditions, including FMS and CFS.

    When I have tried to cycle off them, my symptoms of IBS, chronic sore throat, swollen lymph nodes, and migraine-type headaches return within three days. I've been on them more than a year now and will continue to take them til they starve out the mycoplasmas.

    Jelly is our real mycoplasma research warrior here and she has posted a lot about how antibiotics are being used in treating our illnesses.

    Love, Mikie
  3. Elvira

    Elvira New Member

    what other meds are you on as well? I'm just trying to form a well-rounded picture of a medication regimen that has helped someone to live "better" with this dd we have. Just something else to take to my next dr. appt. with me.
    Thanks for your input!
  4. Mikie

    Mikie Moderator

    I will tell you what I take, but please know that each of us has to tailor make our own regimen. I take Klonopin for sleep, anxiety, and sensory overload. I take Guaifenesin to reverse the symptoms of FMS. I take Synthroid despite the fact that my tests fell withing the "normal" range. I had some symptoms of hypothyroidism.

    The only other meds I take are Estradiol and Provera for HRT. I do have Morphine, but I almost never have to take it as my pain has been dramatically reduced, I believe, by the Guai treatment.

    Love, Mikie
  5. Elvira

    Elvira New Member

    I understand that you have to tailor your medicines to suit each person. I have been on Klonopin in the past, though, so that's something I can consider.

    Do you really think it's the Guai that's helped you so much, or could it be the thyroid med? Did you have to do the whole "get rid of all the sals in your life" thing? I started to try to do that once, but I couldn't get focused enough to do it. So much label reading, trying to figure out what ingredients have sals and which ones don't, etc. It overwhelmed me.
  6. Mikie

    Mikie Moderator

    Welcome to the "Overwhelmed Club." I read the book through about three times before deciding that the Guai was the only treatment offering the possibility of reversing the FMS symptoms. I know it sounds too good to be true, so I was skeptical too.

    My Fibro Fog was almost immediately helped using the Guai; it has taken a lot longer for it to help with the pain, but my pain was relieved long before ever taking the Synthroid. I've been on the Guai more than 1 1/2 years and only on the Synthroid a few months. Almost two years ago, I was using Morphine regularly for my pain; now, I seldom have to resort to using it.

    I am sure that all these meds work together to help, but the Guai proved itself long before I started taking anything else other than the Morphine.

    Because I still have some CFIDS flares, including one right now, where I get fatigued, some question the value of the Guai in my regimen. I can only say that I would rather be dealing with just the CFIDS symptoms than all the pain that the FMS used to cause me. In fact, it's looking more and more as though I caught some kind of bug and didn't get it subdued by the zapper in time and it's kinda hanging on. It's in my chest now.

    Love, Mikie
  7. Elvira

    Elvira New Member

    Bumping for Jelly's question.
  8. Mikie

    Mikie Moderator

    I'll do my best to try to answer your question. The easy part first: Yes, if the Guai is stopped or blocked by sals, the symptoms will return. It is a lifetime treatment until there is a cure. Fortunately, the Guai has few side effects and as awful as it sounds at first, it isn't that hard to eliminate the sals.

    Now the difficult part. Dr. St. A believes ALL our problems are caused by our bodies' inability to excrete the phosphate debris. This affects the mitochondria cells, which are our little power plants, keeping us warm and producing energy. Notice, I didn't say he believes this is the cause of our illness, because he doesn't know why our bodies can't excrete the phosphates.

    Mitochondria are plentiful in both muscle and brain tissue. When the mitochondria cannot function due to the chemical imbalance that the excess phosphates produce, the brain cannot function properly, thus, our neurological problems: Sleep disorders, cognitive problems, sensory overload, and anxiety.

    Now, I believe this is probably true and that if one has just FMS without the symptoms of CFS, the Guai alone will eventually return one to a fairly functional state. Even if FMS and CFS are one and the same illness, not everyone has the CFS-type problems. The CFS part of my problem is worse than the FMS part, so I still suffer from some cognitive and fatigue problems; however, I am not fully reversed either, so that could account for part of it.

    It's interesting to note that Klonopin works so amazingly well for me and that I do no have seizures or even the shakes when I stop taking it. This may be due to the Guai's healing the mitochondria in the brain.

    On the other hand, Dr. St. A may be placing too many eggs in the FMS basket. It is possible that those of us with stealth infections will not completely get well without clearing up the infections as well. Since I'm on two very dynamic treatments, there is no way to know where one leaves off and the other takes over. All I know is that I am slowly (too slowly for my impatient personality) getting better and it is really noticible if I look back two years.

    I think it was AJME who theorized that since mycoplasmas like to thrive in mucus that perhaps the Guai treatment would help starve the mycoplasmas out. I think she was onto something. BTW, where is AJME? Anyone heard from her?

    I have read that the mycoplasmas will make their own slime in which to live. I believe that for years, researchers have waaaaay underestimated the intelligence and mutation abilities of pathogens.

    I hope all this blathering has helped. Much of it is just conjecture and trial and error. I am so totally commited to getting well that I will do whatever it takes to rid my body of these nasty things.

    Love, Mikie
  9. Plantscaper

    Plantscaper New Member

    I'm new to these message boards, however, not new to CFS going on 20+ years, but migraine-like headaches has been one of my worse symptoms with the extreme severity and frequency of occurence. Is this linked to mycoplasma infection?! I just saw Dr. Nicholson's great article posted today and it makes a lot of sense regarding my mother's Rheumatoid Arthritis and my CFS/FM... Is mycoplasma considered to be a contagious infection or does it just take over when you are immune-compromised and does Dr. Nicholson consider it to be the most important diagnosis towards recovery..In the past, I have tested positive for cytomegalovirus...and my triggering event was a severe case of mono+hepatitis..
  10. Mikie

    Mikie Moderator

    Migraine-type headaches are one of the symptoms which goes away when I am on the antibiotics. Mycoplasma infections triggered my CFS and FMS and migraine-type headaches is one of the symptoms of CFS. I don't know that one can make the leap that migraine-type headaches is a symptoms of mycoplasma infections.

    In the active stage, when the infection is contageous, it makes one feel like one has a very bad case of the flu. I recovered from the flu-like symptoms but was left with hip and leg pain, weakness, and stiffness for months. I took a couple of rounds of antibiotics and 800 mgs. of ibuprophen, but at the time, docs didn't know what they were dealing with. I should have been on antibiotics at least six months.

    The antibodies showed up in my blood work because the infection was actie at the time. Now that the infection has gone stealth and is chronic is to have a PCR DNA test performed.

    Love, Mikie