Feeling Better Poll (For those feeling better)

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Sep 5, 2005.

  1. HppeandMe

    HppeandMe New Member

    Hi there gals & guys-

    I would like to take a poll from anyone who hasn't gotten better with Fibromyalgia, Fatigue, Lyme, or anything related. I will then post the results for all of us. I am hoping enough people respond. It could possibly help one or more of us tremendously.

    If you have gotten better please tell me what you have or what you think you have or have been diagnosed with, at what percentage you feel better, and what you used or did to get better. Ex., CFS, 60%, Guai Protocol

    Thanks for helping with this!!!
  2. elsa

    elsa New Member

    I have CFS and FM. It has been a long haul and I'm not finished yet. I'm not at my target remission range, but I am confident that I will get there.

    If I uderstood you right, you want to know what I did to get where I am now? I'll keep it brief: ( Try LOL)

    CFS/FM patients need certain vitamins and minerals that are low
    1000-2000mg Vit C
    WHOLE FOOD B-complex
    B-12, Acetyl-l-carnetine, ALA, Flax Seed Oil,Lecithin,ZMA
    VitE and Whole Food Multi-vit.

    They rest falls under 4 categories for me. Fix the hormones, boost immune system, improve sleep, help support, "feed" the muscles. An added thing is protect the muscles ... yoga stretching and tub soaks.

    Through saliva testing I take DHEA w/pregnenolone gel,
    natural progesterone cream(very small amt.). I take a supplement that increases t-3 through the conversion of t4.
    If need be after DHEA, might add testosterone. If supplement doesn't work, then probably add rx t3.

    Did a sleep study last June. I take lunesta 2mg at night. This is when I also take zma.

    For immune system I take a whey protein concentrate shake for lunch. ( It really taste great) I also take colostrum. Soon, probably before winter sets in ,I'll add transfer factor... one specifically for EBV.

    Whey shake also protects/feed the muscles. So does the ZMA. I take a citrene maliate to reduce lactic acid.
    Alcar ( acet.-l-carnetine) helps muscles through ATP.

    For brain fog I have a shake that has 3000mg l-tyrosine. It also has chloine and DMAE. This is a life saver for me!

    Lastly, I take a small amount of Mucuna Pruriens. These naturally contains l-dopa which is often rx'ed for parkinson patients and showing promise w/ fibro. Franky, I
    like it.

    Two areas I am looking into are mitichondria and amino
    acids ....

    I take tramadol,ibuprofen,sm.amt flexeril, provigil,
    lunesta, singulair and flonase.

    How do I know I'm getting stronger? Sleeping better and waking up in less pain. I'm happier during the day. I am getting more and more done during the day. Time goes by and I realize I had forgotten to take pain meds during the day.... Not needing as many. Also using provigil less and less often.

    So, I am on the right track ... just not where I want to be yet. I am able to work and it's a very physical profession. I am very thankful that I am still doing it. Before, while working I had my teeth gritted and forced 1 foot in front of other. Now, time goes by, and I'm not thinking about fibro or pain ...just enjoying my job and am very happy.

    Hope all this helps. I am sure there are things that I do that I have forgotten about ...

    Take care ,


    Oh yeah, I'm picking up a book Ralph suggested in helping with allergies. Would love to one day not need rx'es.
  3. Tantallon

    Tantallon New Member

    Have read, digested, ordered and now am going to try. But this will move it to top again for more to see and hopefully reply.

    Cheers, Sue.

    Soz, did not mean to make it rhyme![This Message was Edited on 09/07/2005]
  4. Denamay

    Denamay New Member

    Bump it up
  5. kbak

    kbak Member

    Dx'd with CFS/fibro. Dx'd with 3 viruses. I am feeling better first time since I've been dx'd. Taking,

    whole green food suppl. for vit & minerals
    licorice in tincture form
    extra magnesium
    CoQ10 300mg
    selenium (helps deminish virus replication)
    maitake mushroom
    eat 50% raw food

  6. bioman85

    bioman85 New Member

    Where did you find out that you had these viruses? Normal blood tests?
  7. kbak

    kbak Member

    When I went to the FFC,and they did extensive blood work. The trouble is, if your not tested for these things, you don't know you have them, and then you can't target your treatment. I really believe that if everyone were tested, you'd find the vast majority of people with CFS/fibro have a viral cause to their problem.

    On the other hand, you could just figure you have a virus, and treat yourself with alternatives that are antiviral. I'm only taking one prescription drug, and that's really for sleep. Everything else I take is alternative. After a lot of trail and error, I've really found what works for me.
  8. bioman85

    bioman85 New Member

    so you did go to the FFC then? What was your experience like?
  9. kbak

    kbak Member

    I guess what I really gained from going to FFC was finding out what exactly was wrong with me. Having a dx on paper has made it easier to deal with my other docs. Instead of saying to them I think this is what's going on with me, I now can say, I was dx'd with this.

    They really do take the time to work with you. I told them I wanted to do as much alternative treatment as possible. They have the knowledge to do that. Try getting your reg. doc to discuss alternative treatment. They told me that they would work with me, whatever it took to get me feeling better.

    I was a train wreck before I went down there. I'm getting me life back now. If someone doesn't have the money to go, you really can learn enough from this site, between the messages and the library, to do yourself a lot of good.
  10. bioman85

    bioman85 New Member

    I am curious why you did not stay with FFC?
  11. kbak

    kbak Member

    Oh, actually I do phone appointments because I'm 6hrs from Denver. I did finally find someone closer to me, but the doc isn't taking any new patients yet. So I haven't really quit them (FFC). I would like to have a doc closer tho.

    Gees. Looking back on my posts, I sure haven't cleared up my brain fog, have I? Can't hit those keys worth a darn. My spelling leaves something to be desired.
  12. bioman85

    bioman85 New Member

    O alright I understand now. Overall, are you seeing any improvement since starting with the FFC? I have absolutely no problem paying top dollar for my health, but I want to be sure that many are having success there. This disease has taught me that health and happiness are much more important than money.

  13. Banka8

    Banka8 New Member

    I have CFS for 19 years.

    Tried many supplements. I have a whole draw full.

    I'm on the Marshall Protocol and experiencing slow symptom relief. But this protocol takes lots of determination on your part and support from you family. You have to expect to feel worse before you feel better. The die off of bacteria and your immune system running better is going to make your symptoms worse for awhile.

    Don't start it if you don't understand that the protocol must be followed to the letter.

  14. Dee50

    Dee50 New Member

    I'm dealing with acute EBV. I'm a 50 year old female and a smoker.
    I follow Eating by Your Blood Type. I'm A positive.
    I eat only my highly benefical foods. Organic if I can and always fresh. No microwave cooking.
    I was bedridden for months before I started this diet.
    I'm now up and shopping for my food and fixing it.
    Is diet is a big big part of my healing.
    I eat no junk. Food is my medicine.
    I drink herbal teas and 2 or 3 cups of organic regular coffee a day. I do not drink dec. coffee.
    I take Bromelain on a empty stomach for pain.
    I take L.acidophilus,B.bifidum,B.longum probiotic supplement.
    Lipozyme-natural plant enzymes with food and sometimes with out food.
    Warm water and 1/2 a lemon sqeezed into it first thing in the morning. Followed by Colinox intestinail cleanser all natural.
    I rebound on a Needak soft bounce tramp. One or two min. 8 times a day or more.
    Homeopathic remedy 4210 Viral Isode Combination-manfactured by Nature's Forum Corporation Salt Lake City, UT 84116.
    I take no presription drugs.
    At first before the diet-I got Meyer's cocktail IV's weekly for 3 weeks.
    I drink only reverse osmosis water.
    Hope this helps you :)

    [This Message was Edited on 09/08/2005]
    [This Message was Edited on 09/08/2005]
  15. kbak

    kbak Member

    I don't think anyone should jump into doing anything they don't research and feel comfortable with. You certainly can do a search of FFC, and read all the posts on them and the Marshall protocal too. I do think the blood testing is important tho. You need to know if you have any underlying viruses and what your hormones are doing. Plus how your thyroid and ardrnals are functioning.
  16. fivesue

    fivesue New Member

    it wasn't FM; it was arthritis and tendonitis. the doc I used to see didn't even check my wrists or arms when I told her about them...in fact, I don't think she ever touched me except to listen to my heart. Pretty strange.

    Went to a rheumy who diagnosed arthritis in my hands, and then to a therapist who diagnosed tendon. Seems strange to have to go to specialist to diagnose something as simple as that.

    Anyway, I am hurting much less in my arms, hands, etc. Had trigger point massage, and that has helped my neck, etc. The muscles are not nearly as tight now.

    I wonder what it is I really have. Maybe a bit of a lot of things. But I am delighted with this progress.

    Spreading hope.
  17. HppeandMe

    HppeandMe New Member

    I never thought I would be putting a message on this board or at least not this soon. In the past two weeks I have had a huge improvement. I was thinking of quiting my job and going on disability. Everything was a huge disaster. I now feel 40-50% better. I am not sure if it is temporary or if it will be long lasting but I am hoping things will only get better. I am so thankful for the last two weeks!!!

    Anyway, I have been going to the FFC for the past 3 months now with little change. About three weeks ago I felt so ill because I wasn't getting any sleep and was taking everything to try and sleep. I called the FFC and they put me on Restoril. I have been sleeping like a baby with one drawback. I can't get up. Since then I have felt much better though when I finally drag myself out of bed. I told the FFC about not being able to get out of bed so they are trying me on Xyrem I will let you know how that goes. I am on cloud 9 now though!!
  18. Dee50

    Dee50 New Member

    I'm so glad you are feeling better. Hope you get the getting up part worked out.
    I'm getting better too. I still do not have any steady energy.. my energy comes in waves. But...I'm not in any pain anywhere. :)
    Take care
  19. pumpkinpatch

    pumpkinpatch New Member

    I must be starting to feel better because I'm finally eating!! I've gain an appetite. Also sleeping sounder. Dealing with the antibiotics now and really have to space them out.

    I definitely have more energy and hormones are starting to level out. Even gaining a sex life!!

    I will continue my FFC daily regimen, 3 months and moving up.

  20. HppeandMe

    HppeandMe New Member

    I am so happy and so excited that so many of us are feeling better!!!!

    Much love and success!!!
    We can do this together!!!!

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