Anyone been in remission! How long?

Discussion in 'Fibromyalgia Main Forum' started by darude, Jan 12, 2006.

  1. darude

    darude New Member

    Some great posts lately about people in remission - Mikie, Storm, etc. I experienced a mini remission this summer and it lasted about two months. Unfortunately everything is coming back full force. Hoping summer will help again. These COLD Canadian winters.
    HUgs
    Annie the Londoner
  2. ~Sibyle~

    ~Sibyle~ New Member

    I had a remission for a year while pregnant with my youngest and for a few months after he was born. Unfortunately, I am in the middle of a terrible flare now.
  3. whoachief

    whoachief New Member

    My remission lasted about 6 months & it was WONDERFUL!!!!! June - Dec 2005 My daughter & I traveled to Germany in November for a dance competition and I did well. We had a great time!!!! Now my remission is over and I'm having a lot of pain again but I'm anxiously awaiting the next one. Oh please tell me there will be another remission!!! Take care everyone.
  4. elsa

    elsa New Member

    Started getting stronger around last June .... "early remission". Since starting treatment for the HPA axis last September I have been feeling better and better.

    Not quite there yet but light years ahead of where I used to be.

    Elsa
  5. Musica

    Musica New Member

    Does it mean NO pain or fatigue? Do you feel perfectly normal?
  6. elsa

    elsa New Member

    Means walking with your back straight, full strided, smooth gates, the pain in every step you take is gone, happiness and well being, alert and close to normal feeling.

    You stil have CFS/FMs .... remission doesn't necessarily mean life is like that never happened, but you feel better then you ever have since contracting CFS/FMS.

    You have to be proactive in staying that way. If you stop the maintainance protocol that brought you there you'll find yourself right back where you started.

    I hope that helps to define the "remission" goal. Take care

    Elsa
  7. Musica

    Musica New Member

    Yes, that did help. Hard to know what might bring you there, unless you followed a special protocol.
  8. darude

    darude New Member

    Interested in treatment too!
  9. rockyjs

    rockyjs Member

    I have been unhealthy since I was born because of a couple of genetic conditions, but from my teens on I had terrible fatigue, weight loss, weakness, etc.

    In 1993 I weighed 65 pounds and was dying of heart, liver and kidney failure. So the next spring I did something really drastic and moved to Colorado from Missouri. It was the only place I'd ever felt well (I used to go to camp in the summers in the mountains).

    So I moved to a mountain community at 7500 feet and within weeks had dramatically improved. After two years I felt like a new person - I could work full time, exercise and eat anything without reacting.

    I was in a car accident which necessitated a move back down to a lower elevation and my symptoms gradually started returning, so I worked part-time up in the mountains and that kept it at bay.

    In 2003 I contracted West Nile virus and had a reactivation of Epstein-Barr which nearly killed me. I've been sick again ever since. I am so grateful for those nine years of "almost normal" and hope maybe someday I'll experience it again. I've suffered a lot of brain and nerve damage and the doctors aren't very hopeful, but I've beaten the odds before.

    It was odd that after years of trying all kinds of treatments and spending thousands of dollars on doctors, clinics, medications and supplements, it was just the free, pure, dry mountain air that helped heal me.

    Jan

  10. elsa

    elsa New Member

    I have learned either came from this site directly or it originated here with our members.

    In my opinion, I had to address four categories: Infection and Immune function, 2. Sleep Disorder, 3. Nutritional deficiencies common in CFS/FMS patients, 4. Re-balance a wacked out, unregulated HPA axis.

    I have come to agree with the latest research that these are neuroendocrine illnesses. In fact, I believe that is Dr. Chaney's exact words.

    I addressed these things one at a time, as I came to understand them. I was also blessed with a very good primary care doctor that diagnosed me immediately and started me on valtrex soon after.

    Mikie has helped greatly in my infection/immune treatment. Basically 2 rx antivirals for 6 months each and then TF's, whey protein concentrate and colostrum.

    I then had a sleep study done that showed what many of us have to deal with ... alpha intrusion. I also had the added "no rem" sleep to mine. I avoided all medications and supplements that reduced rem sleep and started taking lunesta.

    While I was dealing with the sleep problem I consulted with a Natural Health doctor. I started taking several good quality supplements and amino acids in reaction to CFS/FMS. It was at this point that my PCP declared "early remission".

    I have to tell you, it felt good. But I knew I wasn't done. I had read too much about the HPA axis being disregulated in us. Tansy has a great deal of information on this here.

    The hormones all work on a "loop" system. If the master takes a nose dive the rest of them are going to follow it sooner or later. The longer you have been sick, the more messed up it becomes.

    I have several resources for ya'll to look into that are specialist in CFS/FMS and balancing our hormones. I'll list them:
    Drs. Chaney and Bennett, Worldhealth, Drs. Bradley and Stroud, Drs. Muhammad Yunus, Teitelbaum and Lowe, Professor Gunther Neeck and Dr. Elizabeth Vliet ( who I think is very impressive and treats many CFS/FMS patients as well as females in general).

    I had to look very hard for the right doctor who understood how to test hormones as they relate to CFS/FMS. This is very important. I also had to find that same doc who understood the concept of "treating clinically", not just strickly what the too wide range reference numbers say.

    You need more specific tests then general PCP or even traditional endocrinologist will order.... mostly due to managed care restrictions. If you find a good doc, don't call ahead for insurance approval ... just have the tests done and submitted to insurance. Mine paid 100% of my tests.

    Final evaluation: Hypothyroid, GH Deficiency, Pituitary Dysfunction, Adrenal Insufficiency, Testosterone Deficiency and possible ovarian dysfunction as in not producing enough estrogen needed.

    Drs. Chaney and Bennett have worked with GH. Chaney said something along the lines as being one of the most important treatment steps in his practice. Huge improvements .... including immunity strength ... are noted. When treatment is stopped the patients back slide to where they were.

    Bennett's tests proved not only do we not make GH at night during sleep, but we don't spike GH right after exercise like the normal population does. This would contradict the "get moving" edict many doctors have held to in treament of fibro. "Get moving" only after a doctor has giving you the tools you need to get moving safely.

    Dr. Elizabeth Vliet talks of how pitifully low testosterone is in her CFS/FMS patients. My numbers would agree with her statement. How are you going to create new muscle if you don't have the ingredient needed to make it?

    If the master pregnenolone is weakened, then the rest are going to follow as they are made from pregnenolone.

    The adrenal gland makes cortisol and DHEA. These two hormones should be balanced. When we are in constant stress or our stress response is stuck in the "on" position, then (in order to make enough cortisol) the body starts "stealing" more then it's share of pregnenolone, further lowering the rest of the hormone's numbers.

    This "stealing" takes away what is need to make DHEA, so those two are no longer balanced within the adrenal gland.

    Estrogen, testosterone on down the line get depleted due to lack of ingredients needed to produce them. I wouldn't be surprised if cholesterol numbers didn't go up due to this as cholesterol is used in conjuction with pregenenolone to create alot of these hormones mentioned. (That's just a theory of mine though.)

    Anyway, now that I have started treatment on these many dysregulations I am getting better and better. I haven't had to use my bedtime lunesta for about three weeks now. I get sleepy (like we do) at a normal time, but the biggest bonus is that the one part of my brain that would not "turn off" so I could take advantage of being sleepy and go to bed has apparently resolved itself. It's a great feeling!

    I have a lab that has been my best friend for years ... she's 7 and needs a total hip replacement surgery. To get prepared I started hand walking her three times a day through the neighborhood. Started this just before Christmas. It has felt great ... it wasn't the "one foot in front of the other, grit your teeth because you have to get through this" feeling, but a truly fun time.

    We have two other labs that were getting jealous, so I started walking them too .... just once a day though.

    So you see, I am making progress. The testosterone is making new muscle, the GH is fixing the tears in the muscle I already have, the cortisol is helping the adrenal gland so it will stop stealing pregnenolone, the DHEA/pregnen. is replacing what the cortisol stole and helping to supply more ingredients for other hormones and the biest will hopefully combat the stronger CFS/FMS symptoms I feel after ovulation.

    It's all connected by a big loop .... one goes and the rest will follow. You get the chance to address this and you'll get the chance to feel better. It doesn't happen overnight .. I have been on this almost three months. Once I get my T3 dose where it should be I'll be even better. Most studies I have gone over stress waiting at least 6 (more like 9) months before evaluating it's success ... I can't wait for 6 months if I have made such noticeable improvements after 3.

    I hope this was decipherable. It is an intricate system and alittle hard to explain. I believe it is a must for CFS/FMS patients to address. Read over what the above mentioned Drs. and researchers have to say. Start with Teitelbaum and Vliet and then go from there.

    Take care,

    Elsa

    Forgot to mention .... The path I took for my treatment protocol is almost a carbon copy of what the FFC facilities are doing. I started mine two years ago last fall before I knew those centers existed (or even if they did then).

    I mention this as there have been many tough statements made about those centers and how their treatment looks like a rip .... not so.

    Many are also not happy that they do not accept insurance (except the testing lab does). The integrated doctor and the Natural Health doctor who have treated me did not either. They can't ... especially the integrated doctor (HPA axis Tx).

    Managed care would not allow them the freedom needed for testing and treating as they see fit. Insurance companies also hate compounding pharmacies, so if they had been involved they never would have paid for my bio-id hormones.

    I have been meaning to pass this along. All treatment centers have their problems ... mainly administratively, but for the most part I feel these are very good clinics for CFS, FMS, Lyme and Bio-identical HRT.
    [This Message was Edited on 01/13/2006]