My CFIDS Treatment Regimen

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Mar 8, 2006.

  1. Mikie

    Mikie Moderator

    Some of y'all are familiar with my regimen, which has been helping me heal and make progress. The progress is slow, and I have setbacks, but it is progress nonetheless. We have so many new members that I thought I would post it again for anyone interested.

    Dr. Joseph Brewer has his own protocol which incorporates a lot of what I've done. In fact, I based this plan on his protocol; however, I had already started some things, so I was in the middle of several treatments when I refined my treatment to his protocol. I am very grateful to him for this and to Sujay, one of our members who is a physician. She has not posted here in a long time, but she helped me a great deal.

    I knew that a mycoplasma infection had triggered my illnesses full blown, so after researching Dr. Garth Nicolson's website, Immed, I printed out his protocol with antibiotics, highlighed the material, and annotated it and gave it to my doc. He was happy with the material and the highlighting and annotating save him a lot of time. He prescribed 100 mgs. twice a day of the Doxycycline. In three days, I had a Herxheimer effect and then started to feel better.

    I was on the Doxycycline for 2 1/2 years before I felt I no longer needed it. I took it every day for about six months and then pulsed it with six weeks on and two weeks off. It was a while before I could go the entire two weeks off. Eventually, I was able to stay off of it longer and longer periods of time until I could stay off permanently. Because there may be some stragglers of the mycoplasmas left, I keep the Doxy on hand in case I get any other bacterial infection which could weaken my system.

    About a year into that treatment, I had facial surgery and had to take Famvir to prevent any cold sore virus from getting into my incisions around my eyes. I went into a complete, but temporary, remission following the surgery. My doc and I figured that I had at least one chronic stealth viral infection, probably from the Herpes Family of viruses. The most likely candidates are EBV, CMV, and HHV-6. I was on the Famvir for 1 1/2 years. I still keep an antiviral on hand in case I start to get a viral infection. Herpes Viruses never leave the body and can reactivate when we get run down.

    I had read about hypercoagulation which may be caused from ongoing chronic infections on the HEMEX Website. Pathogens like a low-oxygen environment in which to thrive. A chronically infected person may have an overgrowth of fibrin in her system. This grows like a fiber in the blood vessels and traps platelets. Paradoxically, one with hypercoagulation can bleed and bruise easily because the platelets cannot get to the wound sites. I hemorrhaged following my facial surgery.

    I showed the material to my specialist and he agreed to Heparin injections, which I did myself every day for about 2 1/2 months. When the fibrin dissolves, the pathogens which had been hiding in the fibrin are exposed to the bloodstream and cause a big immune response and Herxheimer reaction. It was by far greater than any caused by the ABX or AV's. The Heparin is part of Dr. Brewer's Protocol.

    Finally, I stopped everything except transfer factors. I bought the TF C and the TF 200 here because they seemed to cover most of the possible chronic infections. I took them for three months. The first month, all I could tolerate was some of the powder in the capsule under my tongue. It was a full month before I could take an entire capsule. After the initial three months, I started to pulse the TF's for only two days every six weeks. I am still doing that and still Herxing each time. I posted about this under a separate thread.

    Transfer factors train the immune system to recognize and kill pathogens in the body. Different TF's target different pathogens. There is also a TF Essential which is more like a souped-up colostrum. It generally strengthens the immune system. I also take colostrum, undenatured whey, and probiotics to keep my immune system healthy. Immunity from the TF's isn't permanent and I will have to continue pulsing them as I am doing now.

    This protocol evolved over quite a period of time as I learned of new approaches. Notice that my docs and I didn't opt for the expensive tests. We did all this empirically. At the time, this was all pretty cutting-edge stuff. Now, the FFC's are basically doing the same protocol but they do extensive testing which, I think, is a good idea.

    I know this looks daunting and overwhelming to anyone just getting started. What I have been doing has helped me a lot and I wanted to share it with everyone. It has worked for me but it may not work for everyone else; however, the basics are the same as the core treatments the FFC's are using but they custom tailor each person's treatment regimen. I hope this helps. Healing CFIDS can be a long road but one I feel we must take or we simply cannot heal. There are other things which other members have posted about which are different than what I have done and which has helped them. I think it is good to hear about all these things.

    Love, Mikie
  2. LISALOO

    LISALOO New Member

    Thank you for taking the time to share. This is great help!
  3. morningsonshine

    morningsonshine New Member

    HI,
    You talk about taking TF and continuing pulsing them, is this for "the rest of your life", or until you figure you got everything under control? I guess i'm wondering how long term this is?
    I don't really understand Transfer factor, accept what you wrote here. It's funny you mentioned colustrum, i was taking that a year ago and quit cause i thought it was making me worse. I bet i was Herxing, i had never heard of that until i came on here.
  4. Mikie

    Mikie Moderator

    How long it will be necessary to pulse the TF's. I guess if I pulse them several times and there is no Herx, I'll feel free to stretch out the length of time I'm off of them. I did try to stretch it out to eight weeks of but I started to feel sick with the usual headaches, swollen lymph nodes, sore throat, fatigue and fluish feeling. These are the smptoms most associated with CFIDS. With the TF's, I only suffer these symptoms every six weeks when I have the immune response or when, like several weeks ago, I get a virus.

    TF's were developed by a doc who graduated from the Harvard School of Medicine. He figured out that pathogens can communicate information to cells in the body. This transfer of info is how our bodies know we are sick. He was able to isolate this transfer info from live pathogens and cultivate it in eggs. This material is put into colostrum. I'm not sure all TF's are made this way, but this is the basic idea. Since only the transfer info is extracted, it cannot infect us and make us sick. It just wakens the immune system and makes it believe the body is under attack. The immune system identifies the pathogen from this transfer info and produces the matter necessary to kill these pathogens. I look at TF's as little oral vaccines which are safe, unlike injections like flu shots. The immunity will not last, so like booster shots, we have to pulse the TF's.

    Our immune systems typically have one side which is overactive and one side which is underactive. Some of us never get colds or flu. That may be because that side of the immune system is functioning. The side which doesn't seem to work well allows certain pathogens to thrive under the immune system's radar. These are called, stealth pathogens. By the time most of us realize we are chronically infected, our bodies are really under seige. The pathogens are using our bodies as a pathogen motel and sapping the life out of us.

    That is probably why we have such strong immune reactions and Herxing. It can take a long time to rid the body of these critters. Many live deep inside cells in the body's organs and are usually only killed off when they kill their host cells and go into the bloodstream in search of new cells to invade.

    I forgot to mention my electronic Hulda Clarke zapper which I use to kill pathogens in the bloodstream. It is just one more weapon at my disposal. It is harmless to the body's tissue but can kill pathogens in the bloodstream. If I use it at the first sign of a virus, the virus will never develop into a full-blown illness. It can still take a couple of weeks for it to go away completely, but it is not nearly as severe as it might be.

    Love, Mikie
  5. Mikie

    Mikie Moderator

    We must have been posting at the same time. I was very interested in reading your post and history. As you know, I believe I really have Gulf War Illness which, I think, is just another kind of CFIDS. I belive our soldiers received contaminated vaccines. Mycoplasmas are a common contaminant in vaccines. In addition, there are far too many vaccines given in too short a time to soldiers. There are soldiers who have become sick with an illness like GWI who never served in the Gulf. I believe that the toxins associated with munitions helped many of the soldiers to get sick. Stress of war is likely another trigger.

    I believe it is entirely possible that you got sick due to the military connection. I think mycoplasma infections can be passed like the common cold or flu when it is active. I think I got it out shopping in the holiday crowds, probably from an infected soldier. We all shopped at the local mall. Once the mycoplasma infection becomes chronic, it appears it can be passed through intimate contact. Many of the wives, children, and even pets, became ill after the soldiers returned home.

    When I got infected, I felt just like I had a bad flu. I was very sick for a few days and weak and fatigued for several weeks. It left me crippled in my legs for several months. The only reason I know I had the infection is that I got to the doc right away and the antibody showed up in a blood test while it was still active. I was on huge doses of Rx ibuprophen for a long time to be able to endure the pain in my legs and hips.

    Who knows how many of us basically got sick with GWI but were never counted. Thanks for your experience. I'm sorry you got sick.

    Love, Mikie
  6. morningsonshine

    morningsonshine New Member

    Mikie, how many times have i said this, "thank you!"
    I really mean it too, you are a huge help to so many of us.
  7. Mikie

    Mikie Moderator

    That means a lot to me. I just try to tell others what has helped me. It saddens me when I read posts from people who have given up. There is so much we can do to help us heal but it isn't easy and we end up having to do a lot of the work ourselves. That is why I'm glad the FFC's have come along. Not everyone can afford them but enough of our members are reporting back that we can derive the info we need to get started with our own docs.

    It is enormously validating for me that the FFC's are doing a lot of the things I did before the FFC's came into being. I have never given up and it has paid off. I hope others can find the strength to pursue healing with success.

    Thanks again for being so kind.

    Love, Mikie
  8. Paracelsus

    Paracelsus New Member

    Mikie, thanks for sharing your story and regimen. People like you are blazing a trail of hope for victims that are confused and feeling helpless.

    Your path to wellness included treatment for mycoplasmas. Why did you suspect mycoplasmas were implicated in your illness?

    You didn't mention this (but I bet you include this precaution in your regimen), but anyone on long-term antibiotic use should take every precaution (antifungal medication/diet change,etc.) to prevent yeast (Candida) overgrowth in the intestines, etc. This is a particular problem for female patients. Systemic yeast infection has been implicated in CFS/CFIDS.

    Thanks again for giving back.
  9. Mikie

    Mikie Moderator

    I usually do. I recommend that everyone, not just those on meds, take probiotics to keep the good flora health in the gut. I also take undenatured whey and colostrum to help my immune system. The electronic zapper kills yeast in the bloodstream but not in the gut. Even with 2 1/2 years on the Doxy, I never had a yeast problem. In fact, when I started using the zapper, my toenail fungus cleared up and pink healthy tissue grew in. There was a line straight across the nails. I didn't have a bad fungus with yellowing or thickening. I had the little white marks which indicate a fungal infection. Down here in the jungle, almost everyone has it from time to time. Problem is that we don't wear shoes; we live in sandals so we need to have attractive feet. My motivation to stay flexible is so I can do my own pedicures, but I digress...

    My mycoplasma infection was active when I saw the doc for what I thought was the flu. The antibody showed up in the blood which was drawn. No one knew back then that only a couple of cycles of ABX wouldn't kill the mycoplasmas. I should have had six month on an ABX. It was ten years later when I started to treat the infection. By then, it had taken over my body. Ackk!

    Thanks for the reminder about yeast and thanks for your kind words. I do hope people can feel less hopeless if they realize that there are those of us getting better.

    Love, Mikie
    [This Message was Edited on 03/08/2006]
  10. Hope678

    Hope678 New Member

    Hi Mikie,
    My protocol is about the same, I am seen by FFC in Atlanta.
    My herx was so terrible from the heparin for several weeks I could not function and pleaded with them to take me off. I have two kids to care for.
    I am now at at point that they want me to go back on heparin, but am scared due to the severity of my first herx.

    Any words of wisdom here?
  11. Mikie

    Mikie Moderator

    Lordy, the worst Herxing and immune response I had was to the Heparin. My ankles swelled up so that I had to take a water pill. I would ask the doc if it is possible to take a lower dose of the Heparin or take it every other day, whatever will help with the reaction. Too strong of a reaction can cause a toxic shock-like illness. It's rare but it does happen.

    Are you on injections or the low-molecular-weight oral type? I've heard that this type is easier to tolerate but some docs aren't familiar with it.

    I admire you for doing this while having children to care for. God bless you.

    Love, Mikie
  12. Mikie

    Mikie Moderator

    Love, Mikie
  13. Smiffy

    Smiffy Member

    Thanks for sharing this, Mikie x
  14. pawprints

    pawprints New Member

    Once again thanks for your insights.

    You give those of us working through a program strength and hope. And that is worth its weight in gold!

  15. Mikie

    Mikie Moderator

    Bumping for Hope
  16. Chootik

    Chootik New Member

    A quick question for anyone who has done Heparin injections before:

    When you were on the Heparin, did you get any adverse reactions to it? How about sharp pains at or around lymph nodes or in the stomach? I just started the injections, so far I've done it for 2 days and I'm ok, but sometimes I get these tingling or sharp pains for just a second in my body.. does that mean the Heparin is working and disolving the Fiberin?

    Also did anyone test positive for high Fibrinogen but negativbe for SFM and TAT? My doc (Holtorf in Los Angeles) says that's very common. But I don't understand how come I don't have high Solubable Fiber Monumer, if my Fibrinogen is so high??

    Anyways, just trying to figure this thing out. If anyone can shed some light on this, please don't hesitate to respond.

    Thanks
  17. Chootik

    Chootik New Member

  18. Mikie

    Mikie Moderator

    Around my neck was quite severe and they swelled up a lot. My immune reaction to the injections, when the pathogens were exposed in the bloodstream, were the worst I have experienced. The transfer factors also produced severe immune responses.

    I can't address your second question. I was never tested. My doc and I did everything empirically, but it seems to have been effective.

    Love, Mikie
  19. kalina

    kalina New Member

    I have been reading your posts for years, but I didn't know the whole story until now. Thank you for taking the time to outline your whole treatment regimen so we can better understand what is helping you.

    Eileen, I was one of the people who stopped posting on this board several years ago. I stopped because I was feeling much worse. I am not much better now (just somewhat less depressed), but after taking a needed break I have jumped back in and am trying to post here again as I am able. IMHO, I don't think there are many people who leave this board because they feel better, so they do not have success stories to tell. Most of us who have been here long enough are dedicated to the CFS/FM community, and wouldn't hold out on their message board friends. I know that if I ever feel better I would be so happy you wouldn't be able to shut me up!

    Kalina
    [This Message was Edited on 04/17/2006]
    [This Message was Edited on 04/17/2006]
  20. Adl123

    Adl123 New Member

    Dear Mikie,
    Thanks for posting this again. It is very helpful.
    Hope you continue to improve.
    Love,
    Adele