Mikie's Path to Health

Discussion in 'Fibromyalgia Main Forum' started by rileyearl, Oct 13, 2005.

  1. rileyearl

    rileyearl New Member

    Hi All,

    I wanted to share the following with you that Mikie was generous enough to share with me.

    Francie


    Good Morning!

    I just read your post to Marcia about your journey to good health and am so impressed at your courage, not to mention the power you have to convince your doctor to go along with what you wanted to try.

    Did you sometimes get scared or discouraged and wonder if you should stop? I feel like that when I ask a doctor about some treatment I've read about here or elsewhere and they agree to go ahead and try it. I go home with a new bottle of pills (or two or five) and think this is really crazy. What do I know about all these drugs? Am I poisoning myself or what?

    Does pulse mean the same thing as IV? Were you a nurse before you got sick? Hope I'm not asking too many questions. Let me know.

    It does take patience, doesn't it? You have to let something have a chance by using it for months before you know. I am very impatient and this will be a hard test for me.

    Do you feel like you are getting close to well?

    Have you heard of something called Artemisinin? It is one of the pieces of treatment for Mycoplasma Pneumoniae. The dose is two twice daily. I've grown Artemisia plants in my garden, but never heard of them as a supplement. I just wondered if you had.

    Is the red tide all cleared up? It must be wonderful to live so close to the beach. It's a 3 hour drive from where we are to the WA coast.

    Thanks for sharing your wisdom! Take care!

    Francie
    [This Message was Edited on 10/15/2005]
  2. Mikie

    Mikie Moderator

    Thanks so much for your really kind words. I appreciate them. You can ask as many questions as you want; that's what we are here for--to share info and experiences.

    From what I've been able to discern, the FCC's are on the right track. It's different now. You can go to these clinics and they pretty much run the gamut of tests and prescribe treatments as needed. When I started, there was nothing like that except maybe for the experts, like Cheney. Even then, not as much was known as is now. It has taken 4 1/2 years to develop my treatment regimen and I never stop tweaking it.

    I have been lucky to have docs who respect my ability to research and who have been willing to work with me. I am not a medical professional, just someone determined to do all I can to try to heal. Most everything I have learned about was something mentioned here and I just went on to research more about the treatments.

    I've never been scared as I've been cautious and always weigh the worst possible scenario versus potential benefits. Most of my treatments have not really been risky. I would print out the info from several sources, highlight the pertinent info, and annotate in the margins for my docs. That saved a lot of time.

    The Guai was the first treatment I tried. It worked so well for me that after 4 1/2 years, I am close to having the FMS symptoms 90 percent reversed. I am not well because of the CFIDS, but I am making headway.

    Because I am in an HMO, the chances of obtaining the PCR DNA tests for pathogens are about the same as a snowball in hell. I did know that my CFIDS was triggered by a mycoplasma infection so it was not difficult to get my doc to try the Doxycycline empirically. The protocol is to take it six months and then pulse it off for two weeks and back on for six. Pulsing just means you don't take it all the time. Most meds which kill pathogens work better if they are pulsed following an initial time period of taking them all the time. Once I was able to stay off the Doxy for two weeks, I kept lengthening the time off until I was able to stay off the Doxy for good without the symptoms' returning.

    Same with antiviral meds. It was a fluke that I found out about Famvir. I had to take it as a preventive measure prior to facial surgery. I went into a complete, but temporary, remission and my doc and I knew that I had chronic viral infection(s). I took the Famvir for about 1 1/2 years and then pulsed it.

    I learned about hypercoagulation from Sujay here and through research on the HEMEX website. Again, the chances that my HMO would perform the ISAC panel were close to zilch, so my doc agreed to the low dose of Heparin on an empirical basis. I stopped it after 2 1/2 months due to bleeding. I figure because I had gotten rid of so many pathogens that there may not have been much fibrin to deal with.

    Transfer factors make so much sense that I believe they are the most efficient way of dealing with infections. They train the immune system to recognize and kill pathogens. I do think an initial period of meds to get rid of as many pathogens as possible before starting the TF's is a good idea. TF's are typically taken for 3 months and then pulsed every 4 to 6 weeks for only a couple of days. Until there is a cure, I will likely be on the TF's for life. Same with the Guai.

    Klonopin is one of the pillars of my treatment regimen. I read about it from Dr. Cheney and it has lived up to his glowing description of how well it works. I did have to wean down on it not long ago as it stopped working at the dose I was on and I didn't want to increase it. It's now working as well as ever as a lower dose. I just added a couple of drops of Doxepin Elixir at bedtime and it seems to be helping with sleep. Again, I read about this in one of Cheney's articles.

    Finally, it occured to me that it would be wise to build up my own immune system while doing all this other stuff. I had already been taking probiotics for years to prevent Leaky Gut Syndrome. I added undenatured whey and colostrum.

    Progress is so slow that I have to look back several years to see how far I have come. I was bedridden most of the time and on morphine for pain 4 1/2 years ago. I have remissions and relapses but most of the time now, I can function well if I don't overdo it. My goal is to be able to work part time. If I had done nothing, I would have just continued to live in pain and be bedridden and probably would be worse. I really had nothing to lose.

    I suspect that those who are getting multiple treatments at once now will heal faster than I did. I am not a patient person either but I learned to be patient and commited to healing and it has paid off. I get discouraged now and then like everyone else but when I do, I just rest and expect to eventually start feeling better.

    There have been treatments I have rejected. I believe the Marshall Protocol is potentially risky and unproven at this time. I know that there are people who are getting better on it. It's just not for me but I might reconsider it later down the road.

    I also rejected stimulants and SSRI and SNRI antidepressants. Dr. Cheney believes they exacerbate the seizure activity in the brain and I agree with him. Again, though, there are others who swear by them.

    The trick is to try things until you have a regimen which is tailored to your personal needs. This takes time and effort but the alternative of giving in to these illnesses isn't an option for me. I'm a fighter. I am very happy to see so many who are now receiving better and more comprehensive treatment instead of the piecemeal trial and error that I went through.

    Well, I've written "War and Peace" here. Sorry, but this isn't something that one can describe in a paragraph or two. Hope this helps.

    Love, Mikie
  3. Mikie

    Mikie Moderator

    This rolled over to page 2. Just want to be sure you see it. Oops! Almost forgot--I haven't heard of Artemesia. Anything which is herbal blocks the Guai, so if this is a botanical, I probably wouldn't have pursued it. To me, that is the only downside of the Guai treatment. Still, for what it has done for me, I'm glad to make a few concessions.

    Love, Mikie
    [This Message was Edited on 10/14/2005]
  4. Mikie

    Mikie Moderator

  5. rileyearl

    rileyearl New Member

    I'm sorry I didn't reply earlier. I read your story end to end and thank you so much!

    I changed the title of this post and invited everyone to read about your journey. It teaches persistance and lets people know there is success!

    Thanks again!

    Francie
  6. TwinMa

    TwinMa New Member

    Mikie,
    Thanks for War and Peace! It is always helpful to see someone's "whole story" or as much as you can realistically share.

    Katy
  7. gramaT

    gramaT New Member

    Your protocol helps put it all together so I can get more help with this dd.

    I would like to get the quai treatment but havent a Dr that will work with me yet.

    thanks and Blessings

    Carolyn
    [This Message was Edited on 10/15/2005]
    [This Message was Edited on 10/15/2005]
  8. Mikie

    Mikie Moderator

    I hope the info can be of some help. I am so glad to see so many posting about the FCC's because even if we can't go to special clinics, we can utilize our own docs and resources to accomplish a lot of healing ourselves. Tansy is a prime example of what can be done. She has achieved a lot of healing against tremendous odds and little help from the medical community.

    Yes, I am still taking a pinch of sea salt with my minerals and I think it is helpful in supplementing the electrolytes in the body.

    Carolyn, if you get Dr. St. Amand's book, "What Your Doctor May Not Tell You About Fibromyalgia," and visit the website, Guaidoc.com, you will have all you need to do the Guai Protocol except for the Guai which is available in the Store here. It isn't necessary to have a doc knowledgeable in the protocol but I would tell my doc about it. If you go to the website, you may find a doc who utilizes the protocol in his or her practice.

    It is necessary to understand the protocol and become sal free (explained in the book) before starting. It is also necessary to learn how to tweak the dose until it is just right. The Guai itself is very benign and usually does not interfere with other meds; however, other meds and supplements can interfere with the Guai. One cannot take salicylates, like aspirin, nor supplements/herbals with botanical extracts in them. One cannot use them on the skin. Something like body lotion with aloe vera could block the Guai's effects.

    I think reading the book is an excellent start. It is a very informative book even if one decides not to try the Guai. Some of it has to be read more than once to really get a handle on it. JMHO, but I think the Guai works for more reasons than just that which Dr. St. Amand has theorized. For me, it's enough that it does work. If you decide to try it, good luck to you. There are several members who are successfully using the Guai and we will be happy to help you.

    Love, Mikie
  9. Smiffy

    Smiffy Member