Healing Takes Time, Patience, and Commitment

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Feb 15, 2006.

  1. Mikie

    Mikie Moderator

    I've read a lot of posts where people question the value of vitamins and supplements because they have "tried" them for three months, which seems to be a reasonable amount of time, and they do not feel better. Most of us expect to see some tangible sign that we are not wasting our money on these things. Unfortunately, it isn't that cut and dried.

    Some feel better after taking probiotics, colostrum, and/or undenatured whey, but many do not notice a difference in how they feel. These things are long-term aids in helping to rebuild one's own immune system and general health. It can take a year before there is enough progress to notice. Progress can be so slow that one has to look back several years to see how much progress has been made.

    My own regimen has taken five years to develop and progress has been so slow that I have to look back to when I was bedridden most of the time and on Morphine for pain to see how far I have come. Even with the progress I've made, I'm not well--yet. If I continue to progress, I will approach something resembling being well but I feel that, unless there is a cure, I will always have to be careful.

    There are two things which I believe are absolutely necessary to healing: Ridding the body of pathogens; and, rebuilding the immune system. A leap of faith that healing is possible is also required.

    Supplementing with vitamins and minerals is required for most of us because we have poor absorbtion. That is where the probiotics can really help. A healthy gut is the first priority.

    With modern medicine, we are conditioned to believe that there is a magic pill and if only we can find it, we will be healed. I wish it were true. There are many pills and other treatments which can help us but we need to be patient. Most of us have been ill a long time and healing can take a long time too.

    Some treatments can be truly amazing, but even when they work that well, one usually needs other treatments to heal. The Guai has worked so well for me that if I didn't also have CFIDS, I would likely consider myself well now. They Guai can take years to work completely but people usually notice at least some improvement within several months. Even after one is well, one must continue a maintenance dose of the Guai for life or until there is a cure.

    CFIDS is much more complex and I suspect that many who have been diagnosed with FMS also have CFIDS or, at least, have chronic infections which must also be addressed. It has taken 2 1/2 years on Doxycycline, 1 1/2 years on Famvir, 3 months of Heparin injections, and 3 months on transfer factors to get my infections under control. I still must pulse the TF's for a couple of days every 6 weeks. TF immunity isn't permanent. TF's are like little oral vaccines and one needs "boosters" every 4-6 weeks.

    In addition to all this, I continue the probiotics, colostrum, and undenatured whey to keep my immune system operating on its own.

    Many of y'all who have followed my saga know all this but there are many, many new members who may not realize how comprehensive treatment must be and how long it can take. I believe that the FFC's have moved things along because of their extensive testing and aggressive treatments. Still, it just doesn't happen overnight. Also, no one treatment works by itself. The treatments work synergystically with one another and the result is better than the sum of the treatments. It takes time before this all comes together.

    So, my friends, don't give up easily. Stay the fight and give it all you've got. Even when it seems that you are not making progress, progress may be happening but at such a slow speed that you don't notice until you look back.

    Love, Mikie
  2. Pianowoman

    Pianowoman New Member

    I can't express things as eloquently as you Mikie but I support all that you are saying. It has taken me a long time but I am finally beginning to see real progress. I addressed some of the nutritional problems,( and continue to rework this) then had my mercury fillings replaced about a year ago. I have been detoxing for about 2 years. In the past few months, I began addressing the pathogens along with hormonal issues.That was when things began to click. I believe, as you do, that there is a synergy with these treatments. One has to find what is best for them.

    It has been a bit of a revelation for me that finally after all this time, things are changing. I am realizing that the patience I have had ( most of the time!)with the treatments has paid off and that they really have ben working. After all, it took us a long time to get this way!

    You have so much wisdom , Mikie and we are grateful that you continue to share it with us.


  3. Mikie

    Mikie Moderator

    I really appreciate the feedback and kind words. After so many years on this board, I see things come up over and over again from all the new members we get. I feel so bad for anyone just starting out, learning and treating our illnesses. At first, it can seem so hopeless and futile. We all have times where we feel this way even as we make progress because progress is so slooooooow.

    The good news is that there is so much we can do and our members have been very generous in sharing what is working for them. We also now have the FFC's and those using them are reporting on their progress or, in some cases, lack of progress. Still, I believe the FFC's are on the right track and in time, will refine their protocols according to the results they see. Of course, we all have different triggers and associated conditions, so there is no "one-size-fits-all" treatment protocol.

    Bluemoon, the Guai isn't a cure but it offers the possibility of reversing the symptoms of FMS. I am about 90 percent reversed. I seldom take anything stronger than OTC meds for my pain; however, if I overdo it physically or injure myself, the pain can return. How much of this is due to the CFIDS, I don't know.

    I'm not sure whether the Guai, by itself, can address chronic infections. My guess is that it cannot. Perhaps, as one's FMS symptoms are addressed, the immune system grows stronger, but most of the chronic infections we suffer hide under the radar of the immune system. I think, at the very least, we need to take the probiotics, colostrum, and whey to rebuild our immune systems. I just posted under the topic of whey and posted Dr. Cheney's article. In his article, he claims the whey can help kill bacteria and viruses.

    How much progress one makes on the Guai depends on a lot of things. I might be even more reversed now except that I'm a bit careless about the sals. I can tolerate a few of them so I'm not as careful as I was when I started. Also, as one becomes more reversed, the blocking from the sals isn't as noticible as in the beginning.

    The rule of thumb is that it takes 2-3 months on the Guai for every year one has been sick. Most of us have probably been sick a lot longer than we think. I increased the Guai to speed things up because I can look clear back to childhood and recognize FMS symptoms in retrospect. At one time, I was taking 2400 mgs. a day. Each time I increased the dose, I had a Guai flare from hell. I was passing so much debris in my urine that it started to build up in the bottom of the toilet bowl in my sluggish toilet. It's like tarter on teeth and I had to break it up to flush it. I'm not taking 400 mgs. twice a day and it seems to be the right dose for me at this point.

    One hint to speed things up for you: Take a calcium tablet with a meal and it will allow you to excrete the debris through the intestines instead of the kidneys. Good luck to you.

    Love, Mikie
  4. Mikie

    Mikie Moderator

    Love, Mikie
  5. windblade

    windblade Active Member

    Great post, Mikie.

    VERY encouraging!
  6. PVLady

    PVLady New Member

    Thanks for posting this. I have read it carefully twice. It is very easy to become discouraged.

    Vilke, I agree, the more the medical community learns about fibro and CFS the more treatments will become available. I am so glad you found meds that helped. I wanted to take Zoloft but my stomach was so upset, I had to stop it.

    I have been using Klonopin and Ultram which have helped alot. You are so right, it does help to look forward to even better treatments that will come along.

    I have alot of digestive problems, (Barretts Esophagus) which requires I take Prevacid. I still have problems with appetite and discomfort. I am using a probiotic (Pearl by Enzymatic Therapy).

    Yes, we need to remember how far we have come.

  7. elsa

    elsa New Member

    Beautifully written. Thank you for taking the time and for the encouragement some newly diagnosed may be needing to hear.

    I too am better but always aware. I have phrased it "in remission, but will always have cfs/fms". I agree that it will always take maintenance, effort and an understanding that this is a chronic illness that currently has no cure. I can't do treatment, get well, then dust my hands off saying "that's that."

    I have gotten so tuned in to what's going on that sometimes I can tell when I need a boost of something. Maybe not a single thing, but a system as a whole.

    I can tell when my mitochodria support needs tweeking ... maybe I had a run of very physical days ... being a chronic illness and not effectively producing mito support to begin with, I "feel" the need to adjust the receipe up for a bit.

    All of the things I worked on took time ... Thankfully, with this board's help, I didn't have too many "misses" in treatments .... Also, I don't think my CFS side was as severe as my fibro side.

    I think that makes a difference in healing. Although I did immune/infection treatment for 1 1/2 yrs, it may not have needed to take as long ... unlike others who have multiple chronic fatigue issues, I just had one to deal with ... and a chronic need to boost my immune system until a cure is found..

    I hope you are doing well. Thank you for writing ....

  8. bigmh

    bigmh New Member

    Mikie...thanks for your posts and for your gentle reminders and encouragement. I feel so uneducated reading about all of the things that you are doing, but am learning.

    I tried guai for a few months, but did not have any success. Maybe, as you suggested, it wasn't a long-enough trial. I will think about that...

    I mostly have FMS, but may have some CFS as well. For me, exercise has been a key to my improvement. It is just difficult to kick myself out the door to walk or go to the gym! If I do, my mental and physical health are greatly improved. The world just looks brighter!

    I still struggle with the pain, though, most of the time. I read your posts and consider them as I know you have put a lot of thought into each one. You give me the hope to try guai again. Thanks again for your time and gift of knowledge to all on this board.

    Blessings to you...Ann
  9. ladude

    ladude New Member

    Thanks for the very encouragin words - they are so needed!

    It is always nice to hear from you.
    Used to live in SE FL, don't know how you do the humidity. Going back for visits was difficult when healthy, don't know how I'd do it these days.

  10. sues1

    sues1 New Member

    You have answered somethings for me in your posting. I always try to read all that you post.

    Just wanted to give you and BIG THANKS
    MANY (gentle) HUGS
    and BLESSINGS GALORE...............Susan
  11. Mikie

    Mikie Moderator

    I really appreciate all your kindness. I know telling those new to our illnesses that it can take years to heal may not be exactly encouraging, but I think it's important to know what we are dealing with. I find it encouraging that there are any treatments which help us heal. Many have been told there is nothing which can be done. That just isn't true. There are many protocols which have helped our members.

    My prayers and wishes for healing go out to everyone.

    Love, Mikie