Question for Mikie

Discussion in 'Fibromyalgia Main Forum' started by TerriM, Feb 14, 2003.

  1. TerriM

    TerriM New Member

    Hi Mikie -- In some posts the other day (I think I asked about Paul Cheney and some others were asking about other expensive CFS specialists) you had said you never knew anyone on the boards that went to the really expensive specialists that recovered. It sounds like quite a few people here are now working outside the home and many people sound like they are doing better. My question is actually two fold:

    1. Have you known people here who have fully recovered (I don't have any friends or family with CFS that I know personally).

    2. There may not be a quick answer here, but what type of dr. do most people see with CFS -- I've been struggling to find someone in my area (Annapolis, MD) or even Baltimore to go to. Dr. Teitlebaum is in Annapolis, but is way out of my price range. and of course I have been seeing some drs. to rule other diseases out.

    My endocrinologist says that people with CFS can have different underlying problems causing the fatigue/immune imbalance so treatment is different for everyone. From reading posts that seems to be the case as well as treatments working for some and not others.

    Do you believe it is just something we all have to figure out individually? Its so tough because with other diseases there are doctors you are "supposed" to see (i.e. MS you see a neurologist, diabetes you see an endocrinologist, etc.)

    Any advice you can give would be great. I understand the need to rule other disorders out, but I believe going around to all of these doctors is making me sicker because I'm not resting well and it is all somewhat stressful. My huband thinks if I learn to relax and rest better my body will have a chance to heal itself, but I'm afraid to just take a chance on that and not do anything else. I tend to believe it has to be a part of the therapy with some traditional medicine & alternative things mixed in.

    Thanks for all of your great help and support. Terri
  2. Mikie

    Mikie Moderator

    I have read about people recovering from CFS. It appears from what I have read that the earlier the illness is diagnosed and the more aggressive the treatment, the better the odds are of getting better.

    I do believe a lot depends on how badly the immune system has been damaged by the illness. Dr. Cheney has an atricle on this too, something about the stages of CFS.

    I also believe that what triggered the illness and whether there are accompanying problems has a big effect on getting well and also on the treatment indicated.

    Basically, I believe one must absolutely get rid of any underlying infections or healing is impossible. From there on, I think each person must tailor treatment to her own unique situation.

    This is very vague, I know, but our illnesses are not well understood. Cheney is about the most knowledgeable and has been treating and researching CFS longer than just about anyone. Despite this, he does not have any surefire treatments for getting better.

    I decided to start with my symptoms and treat the worst symptom first. It was a tossup between fatigue and pain. I decided the pain was the easiest to treat and took Morphine until I could find other treatments like the Guai (which is only for FMS) and physical therapy. Elavil was not effective for my sleep, but the Klonopin was. None of my treatments have been overnight successes. I've been at this for more than two years, trying treatments, keeping some, and discarding others.

    I was lucky that the Klonopin addressed my anxiety/panic attacks as well as my tinnitus and sensory overload, so I didn't have to seek other treatments for those problems. I'm also luck that I do not suffer from depression.

    My fatigue and cognitive problems are improving, but it's at a snail's pace.

    The Doxy treatment has addressed my underlying mycoplasma infection and I believe my zapper and colloidal silver help keep viruses and fungi at bay. The Doxy cleared up my IBS, migraine-type headaches, chronic low-grade temperatures, and chronic sore throat. Again, one drug which has taken care of multiple problems.

    I'm seeing a new doc next month to find out if there is anything my doc and I have overlooked in my treatment. I do believe I will recover to at least 80 percent of my pre-illness health. That would be great and I would be satisfied with that.

    I don't believe we are ever out of the woods with this stuff. We just learn to take better care of ourselves. Relapse is always a possibility. I am taking whey and collostrum, as well as the Hgh stimulant to try to build my immune system back up to try to prevent a relapse.

    What I am doing is working for me, but it might do nothing for someone else. I just hope by telling y'all what I am doing that it give you some ideas and things to at least try or to discuss with your docs.

    Love, Mikie
  3. TerriM

    TerriM New Member

    It seems I am doing some of the right things then. I'm on no drugs at this time because each one I've taken has given me such bad side effects that it didn't pay. I have read the other "phases" article by Dr. Cheney. It sounds like some of us do get worse than others . . . its a little hard to tell which phase we are in.

    My next step is to an infectious disease dr & an immunologist . . . if I can find out if I have any pathogens & what is going on with my immune system it may help.

    I'm afraid because of all of the adverse reactions to try a lot of supplements/herbs/etc. But I am changing my lifestyle from before . . . I was so overworked I can't believe it. Now I'm eating really well, using natural remedies for infections when I can, taking walks, trying to learn to relax with meditation & progressive relaxation to get better sleep. Sometimes I think a big part of this is helping our bodies the best we can so they can heal us. I definitely was in the "overachiever" category & my career meant so much to me . . . it has been a really difficult transition. Although I was lucky that I love antiques and was a dealer on the side for fun . . . now hopefully as I get strength back I can focus on that. One thing I know is that I will be much smarter for the experience.

    I appreciate all of the information. I am so glad that you are doing much better.
  4. Mikie

    Mikie Moderator

    I'm sorry you have sensitivity problems to medications and supplements. Many here do. It sounds to me like you are taking a really good approach to healing. Best of luck to you. BTW, overachieving is overrated ;)

    Love, Mikie