Protocal for CFID

Discussion in 'Fibromyalgia Main Forum' started by leomonkey, Dec 13, 2005.

  1. leomonkey

    leomonkey Member

    I have suffered from CFID for seven years... the last few have left me mostly housebound.

    Any positive intervention has happened mostly due to my own research. I have a compassionate doctor but I am horrified by the lack of information that she, along with most others have about this condition.

    I am hoping to gain additional practical knowledge and experience from people of the interventions (medical and holistic) they have personally used with some effectiveness.

    In summary, my question is... If you could start at the beginning again, with what you know now, what protocal would you use to treat CFID? (What would you start with first...next, etc.?)
  2. KelB

    KelB New Member

    Hi there and welcome.

    I've "only" had CFS since August 2004, so I've not really had time to shop around. The things that have helped me so far are:

    1) Using a routine of rests and sleep hygiene techniques, so improve my sleep at night.

    2) Learning how to pace my everyday and work activities so that they have less of an impact on me.

    3) CBT. I was lucky and had Cognitive Behavioural Therapy in a very sensible hospital unit. They absolutely believed in CFS as a real condition with physical roots and symptoms (albeit ones that weren't understood yet) and gave the CBT as a way of coping better. It was never presented to me as a cure and it has helped me enormously. However, most CFS places offering CBT do seem to think that it is the magic bullet and offer it on the basis that CFS is all in the mind.

    I would certainly recommend trying CBT but ONLY if it's offered by the right people with the right mindset.

    Everyone seems to have a slightly different set of symptoms, and there isn't a one-size-fits-all solution for everyone.

    Knowing what I know now, I'd say don't accept what you're told by a GP and leave it at that. Mine were well-meaning and offered limited advice but really didn't have a grasp of reality of CFS. It was only when I was referred to a Rheumy specialising in CFS, then on to a hospital Chronic Fatigue Support Unit, that I got practical information that I could actually use to improve my life.
  3. Mikie

    Mikie Moderator

    If that is not possible, I would do what I did before the FFC's were available--research and bring the info to my doc. If one has been sick a long time, it takes a long time to recover and progress is so slow that one must often look back several years to see how far one has come.

    We are each different and have different manifestations of the illness but there are some things we seem to have in common.

    Most of us have sleep problems. Some of our insomnia, anxiety, RLS, racing brain, tinnitus, and sensory overload may be caused by a slight state of seizure which prevents our being able to get refreshing sleep. Many have been helped with Klonopin or Neurontin; both are antiseizure/antispasmodic meds.

    Most of us have chronic infections which do not show up in routine testing. Chronic infections can bring on hypercoagulation which must also be addressed. PCR DNA tests are expensive so my docs and I tried antivirals and antibiotics empirically. Both have done wonders for me. I now use the transfer factors and they have continued the work of the ABX and AV's in what I consider a safer manner. TF's are very potent and helpful. I went to the HEMEX Labs website and found the material I needed on hypercoagulation and my doc prescribed the Heparin injections which also helped me.

    Most of us have broken immune systems which must be rebuilt. Probiotics, undenatured whey, and colostrum help the immune system heal.

    Depression likely doesn't cause CFIDS but it may accompany it. Antidepressants can have some very undesirable side effects and my not be a desirable treatment unless one has clinical depression. I am not a fan of AD's but some here have been helped by them. The SSRI's, SNRI's, and stimulants can exacerbate the seizure activity in the brain.

    I have posted my regimen here in the past because I am getting better, allbeit slowly. What my docs and I did is standard protocol at the FFC's, so we were on the right track, I believe. I also have FMS and have found the Guai Protocol to be the most effective treatment long term.

    Hope this helps.

    Love, Mikie
  4. leomonkey

    leomonkey Member

    Much valuable information!

    Mikie... FCC? Do tell what this is!

    Note: I am Canadian so some terminology, resources and other information seems to vary.

  5. leomonkey

    leomonkey Member

    Lots sure doesn't show up in testing...

    There was mention of anit-viral and antibiotics. Are there sources of information that you have that can provide more information on this? Practical use of these seems to come more from individual with CFID working in partnership with their doctors than what research provides. I am seeking information to provide my doctors with as we have reached a point of stagnation (for the past two years) and they are not actively involved in anything other than just suggesting "time" to heal.


    ABX and AV's and TF's -What are these?


    Any suggestions on detox measures? I agree with the need to keep body toxicity to a minimum but have not been able to detox using herbal means for some time. My body has weakened to the point where it cannot handle this.

    I just got onto this chat today but have already read something about "The Shake"... would love to know more about this. I do use denatured whey each evening from Immunocal. Is this related?


    Hypothalamic-pituitary-adrenal axis? Hmmm... can you tell me more about interventions used for this?



  6. Banka8

    Banka8 New Member

    Many years of supplements and only a few helped to some degree. I believe no supplement will cure CFS or FM. You can meditate, visit a shrink, align your chakra's, use accupuncture, zap your body with electrical shocks, chug down every vitamin and mineral and herb known to man kind and you will still be sick and with less money in your pocket.

    To bad the Marshall Protocol wasn't around when I first got sick. This is the only treatment that has given me any real hope of leading a normal life again. I am experiencing improvements all the time. By this time next year I will know if the Marshall Protocol was a success for me.

    Good luck and I hope you look into the Marshall Protocol.

    Judy
  7. leomonkey

    leomonkey Member

    Judy,

    Having tried the latest herbal remedy, desperately seeking answers has been costly, and, at times, counter productive. If I would have nickel for every time someone proposed the "cure" for CFID... If there is one thing that can be learned from this condition is that WE are responsible for our health. Doctors and peers are resources along the way.

    I have relied a great deal on energy work and meditation to keep me grounded in this process of healing. It has allowed me to make decisions about what I present to my body and what to not use. This requires a great deal of self determination and confidence to navigate through the medical system and maintain your own truth. And yes, my chakras are aligned ;)

    I have come to terms with the fact that my body requires more than good living. Having given my all for five years in this direction, I find the holistic approach is necessary but not complete. I am recognizing the need to investigate the allopathic interventions and use these in harmony with holistic methods.

    For the most part, there is not good, well researched information out there. I find that I am using my expertise in conducting research and investigating research (in a non medical field) coming into play. I believe in solid research, it debunks myths and separates irrelevant information. This is terribly lacking in both the allopathic and holistic communities. This often leaves us all with a "trial and error" approach to finding relief from our symptoms. I am not a doctor and I respect the medical profession as having advanced knowledge and the potential to be a valuable resource. Unfortunately, at this time, I believe it will be the suffers of this condition that will lead everyone to the answers. So with this in mind, I will check out your resource. Thanks.

  8. Mikie

    Mikie Moderator

    And this website. Dr. Garth Nicolson's Immed website has good info on mycoplasma infections, how to get tested for them, and the ABX treatment protocol. The HEMEX Lab website has similar info on hypercoagulation. You can also do a web search on mycoplasmas, Lyme, and stealth viruses to find more info.

    There is a ton of info available. I spent hours and hours researching these things. The beauty of the FFC's is that they do all the testing in one place. I know Canadians come to the U.S. and see docs but I don't know how this is handled with the Canadian healthcare system. At the FFC's, you have to pay up front and collect from any third-party yourself.

    Start with your worst symptom and try to treat that first. With those of us with CFIDS, that is usually sleep and energy. Then, go to the next worst symptom.

    I has taken 4 1/2 years to formulate my own regimen. If I had had the FFC's available, it would have saved me a lot of time and research. Nothing is going to be "the answer" for all of us but I do believe that, with the right treatments, most of us can improve. I am not well--yet but 5 years ago, I was on morphine for pain and bedridden most of the time. After the First of the year, I am going to the state rehab dept to see about some kind of part-time work.

    Best of luck to you.

    Love, Mikie