How one person got well from CFS

Discussion in 'Fibromyalgia Main Forum' started by pepper, Sep 28, 2005.

  1. pepper

    pepper New Member

    I spoke to a woman today who, through a tremendous amount of research and hard work, brought her daughter from bedridden to being able to attend university full time. Her daughter became sick at the age of 19 and is now 30 and just started university this month.

    We know that young people have a better chance at getting well than us "older folks". However, this girl was sick for a very long time and was so sick that she could not drive a car for 10 years. I could tell from talking to her mom that this girl was as sick as I am or sicker for most of those 11 yrs.

    Keeping in mind that what works for one does not necessarily work for another, I have decided to try the things that this lady and her daughter have tried to get on the road to better health.

    I will share with you the basics of what she told me. I hope that some of you might find this helpful.

    She said that before anything, she recommends that I go gluten free. She found that her whole family felt better once she did that, especially her sick daughter. That was one of the last things that she tried and she said that she wishes they had tried it early on.

    Secondly, she recommends using the far infrared sauna. She recommends Sunlight Saunas because they have published results that the rays are the recommended far infrared. I do not sell them nor does she, but that is what she has discovered from her research. So it could be flawed. (Actually if anyone knows of other companies who have published results from an unbiased source, I would be interested in hearing about them before committing to one of these.) They bought a solo sauna so it could be used in an apartment or other smaller area.

    This mother does sell magnets though which she began doing after she saw how they helped her daughter. She recommends the magnetic mattress pad and the insoles. I told her I wasn't prepared to spend that money right now so she recommended the Personal Comfort Pad which can be used in a similar way. Her daughter wears magnets around her neck too.

    Other treatments that she uses:
    - balanced meals following the recommendations of the ratio of Carbs/Fats/Proteins as outlined in The Zone.
    - no sugar or red meat
    - Air filter that emits negative ions but no ozone
    - Supplements made from whole foods
    - Rebounder
    - Alkaline water (??)
    - dabbing pure lavender oil on the pillow case at night to help with sleep and on your clothes if you are chemically sensitive. She says it seems to help nullify the offensive odours around us. Essential oils should be high quality, in a dark bottle and have a best before date on the bottom.
    - lots of green vegetables
    - Greens supplements (yuck)

    I have been thinking about a higher quality rebounder and a far infrared sauna for some time now and think it is time. She agrees with my CFS doctor in that no one thing will work. We each have to find the right combination of things for ourselves.

    Maybe some of you can take some of this information and have it help you. This lady insists that we have to be very patient and accept minor improvements. Eventually she believes that we can have a good portion of our health back. Her daughter still adheres to this program and she knows that she will always have to be careful.

    I would appreciate any comments on this program.

    Thanks.

    Pepper

    [This Message was Edited on 09/28/2005]
  2. Rosiebud

    Rosiebud New Member

    I think this is good advice and seems to follow lots of advice given on CFS. Good diet, supplements etc.

    I'm wondering what an infrared sauna is and if we get them in UK, an American friend of mine suggested one the other day.

    Thats good that the lady's daughter got well, I've often thought about giving up on gluten but find it really hard. Might give it another try.

    Thanks

    love Rosie
  3. pepper

    pepper New Member

    I agree with you - most (probably all) of this advice has been on this board. Along with hundreds of other things. I often feel overwhelmed with all the information and varying points of view. I just thought that taking the program of one person who has had success and starting it slowly might be helpful.

    There have been other success stories on here that are completely different from this one. I need a place to start and because what this lady has done for her daughter is not invasive, I think it might be good for some of us.

    I have tried so many things recommended here and have had some bad reactions for one reason or another. My liver is very toxic so I have to be very careful. Even milk thistle knocks me on my keester. I think the low dosage antibiotics would be good for me but my liver enzymes went through the roof when I tried it.

    Gluten free - My CFS doctor went through his notes and discovered that I did feel better when I did this diet years ago. So it is worth trying again. I have noticed that a lot of people on this board also feel better gluten-free. It is worth a try. There are many many sites regarding Celiac's disease where we can learn about this. My sister has been living on this diet for years and has no problem with it any more.

    Far InfraRed Sauna - I checked out that one web site and there is a place in the address section to choose which country you live in - many European countries are listed. The stumbling block is the price. But the Solo Sauna is a little cheaper alternative and doesn't take up a lot of room.

    Hugs. Pepper
    [This Message was Edited on 09/29/2005]
  4. foxglove9922

    foxglove9922 New Member

    I went gluten free 2 months ago and did feel a difference when during that time I tried to add in gluten twice....that's when I truly knew it was helping me.

    I had the bloodwork and endo biopsies done last month and was told I am not gluten intolerant but I feel better without it.....go figure.
  5. pepper

    pepper New Member

    As I said right off the bat, what works for one does necessarily work for another. I have tried so many things that others have had success with and I had no reaction or a very bad reaction (Moducare, CoQ10, Klonopin, etc. etc.)

    They did adopt a very healthy lifestyle but at the same time detoxed using the infrared sauna and rebounder. She also maintains that if her daughter goes off the Carb/Protein/Fat ratio, she feels very ill. She weighs everything before eating it.

    The air filter is by her daughter's bed. She says that this type of air filter is like being by the ocean and promotes a better sleep as does the lavender on her pillow.

    Of course this is not a solution for everybody. It might not even be a solution for me but it just gives me a place to start.

    Other things are important such as reducing stress and some form of exercise. It is up to each of us to find the right combination that works for us as individuals.

    Pepper
  6. pepper

    pepper New Member

    but I understood that once you had been on a gluten-free diet for any amount of time, that celiac disease would never show up in the biopsy. I went gluten-free several years ago and decided to give it up because it was hard to do.

    Afterwards I decided to be tested for celiac disease and was told (I cannot remember by whom) that the test would be inaccurate because I had already been on the diet! It never made sense to me but that is what I was told at the time.

    You can also be sensitive to gluten without having celiac disease. I understand that it can affect your digestive system (that must be celiac disease) and/or your immune system and/or your nervous system.

    Pepper
  7. Jen102

    Jen102 New Member

    to hear a success story. good for her.

    a note on the gluten thing. the reason it may not show up on a certain test (like a stool test) if you are avoiding glutens may be because they are testing antibodies your body is making to the gluten. if you haven't ingested gluten, your body won't be making the antibodies and they won't show up on testing. secondly, i understand that there are certain genes which predispose to true celiac sprue disease, while there are others which predispose to gluten sensitivity without having "true" celiacs disease. this is what i have learned anyway. Jen
  8. pepper

    pepper New Member

    You may be right. This young lady is now studying genomology in university because it was genome testing that led to the discovery of her gluten sensitivity. Her entire family was tested and they all had that gluten sensitivity gene. This is obviously a newer method of testing and I don't really understand it.

    Pepper
  9. tansy

    tansy New Member

    seems to affect many of us, even if we do not have caeliac disease.

    Mine was found years ago. I had terrible diarrhea, weight loss so profound I looked like those living in areas of starvation with the same swollen abdomen, and had lost a lot of muscle. I was so hungry I was eating during the night time hours as well as during the day.

    Local doctors insisted I had an eating disorder but thankfully my chiro recommended a doctor who picked up gluten intolerance straight away. I had several anaemias which is another indication of gluten intolerance.

    When I tried gluten after some years, I was in no doubt that I was still intolerant, and was amazed to discover how global the symptoms were.

    There are a % who get well on protocols like the one above. Even if not curative similar approaches can optimise our health and help with some of our symptoms.

    Tansy
  10. dancingstar

    dancingstar New Member

    My doctor ran a blood test for a gluten sensitivity that he says that he can get an accurate result from even once I've stopped eating the stuff, which I had quit about a month before taking the blood test.

    It came up negative for gluten intolerance. Still, I do my best to avoid foods that contain gluten cause I find I'm healthier without it. Now, though, I won't worry quite as much about it being in things like soy sauce and the like...only because I don't have a true gluten allergy.

    I think there are lots of us that just do better without gluten and/or wheat in our diets.

    It sure sounds to me like this mother is on the right track to keeping her child healthy.
  11. cobie

    cobie New Member

    In Coelic Disease(not sure if this occurs in Gluten intolerance) which is an autoimmune disease the gluten reacts with the body and an immune reaction occurs which causes the body to destroy the finger like projections in the bowel called villi,these enable a greater surface area for improved absorbtion of nutrients.When they do a biopsy of the bowel to diagnose coelic disease they look for these blunted villi. If you have been on a gluten free diet and the bowel has healed you wont see the damaged villi.If the villi remain damaged malnutrition occurs.I would think because of the immune involvent in cfs the least stress on the immune system the better. Regards Cobie
  12. pepper

    pepper New Member

    I am not looking for a cure. I am just hoping to "optimize my health" as you say. If this will do it for me, I will happy to do what I have to do.

    Thanks for your opinion. I appreciate it.
    Pepper
  13. pepper

    pepper New Member

    I think you are right. Gluten doesn't seem to be good for so many of us and it would be best to err on the side of caution. It will be hard to stay gluten free but worth it to feel better.

    Cobie, your explanation of the celiac test makes a lot of sense. Now I get it!

    Thank you both for your input.
    Pepper
  14. Prunella

    Prunella New Member

    Thanks Pepper for all the info. I have always wanted a suana and will check into that. I heard they are great because you sweat out a lot of toxins from your body that way.

    I have been gluten free since December. Last month I started eating some gluten again. I was feeling so much better was going thru a hectic time so I thought it would be OK. Well, it wasn't!!! The migraines, malaise, diarreaha, fatigue, and poisoned feeling came crashing back! No more gluten for me and I don't need a test to tell me that. Also, for the first time in 20 yrs., I don't have a build up of white stuff on my right tonsil. Interesting benefit of the diet! I feel like me again and it's wonderful!

    Is that geome test widely available? My daughter eats lots of gluten and doesn't want to give it up. A test would be nice. She would believe that over Mom's advice!


    One more question. Is a rebounder the same as a mini trampoline?

    I noticed her daughter got better without meds. Good for her. I love this self help stuff!
  15. Prunella

    Prunella New Member

    I just did a Google search on Far Infrared Saunas and came across a site that mentioned some negatives about infrared saunas. It is www.altmed.creighton.edu/sauna. For example, it said not to use one if you have an infection anywhere in your body including dental. We might not know if we have an infection. I guess I would rule this out for now for this and other reasons.

    I have always been skeptical about magnets also. It may be the gluten and other things got her daughter well. But who knows?
  16. pastel

    pastel New Member

    after I used one last winter due to sinus problems I began to notice a wheezing sound when breathing.

    Subsequently learned that negative ion generators can cause
    lung damage...don't recall the full details, but I unplugged
    mine smart-quick and while it took 2 or 3 weeks, the wheezing did go away. Pretty scary.

    The gluten free diet definitely does not appeal to me but
    with all the GI distress I experience (and my poor spouse
    has to tolerate!) maybe I'd better give it a real think.

    Thanks for this.

    Catherine
  17. rileyearl

    rileyearl New Member

    Good information!

    Francie
  18. pepper

    pepper New Member

    Thank you for the gluten free info. This is something that I am trying starting today. Only time will tell if that is part of the answer for me. I am glad to hear that you have had success with it.

    This genome test was done at a lab in the U.S. somewhere and cost about $400 Canadian. Our doctor ordered it for her. I can find out more about it if you are interested. I can understand what you are saying about your daughter. I think that my kids should go off gluten too - the sensitivity is hereditary - but they don't think much of that type of thing.

    This lady's daughter did not use meds to get well. Her mom did say that they tried "everything" so maybe that included meds at one time or another but that was not part of her recovery.

    A rebounder is the same as a mini-trampoline. Ralph recommended the Needak rebounders because they are high quality. According to him, the lower quality ones (which I have) can cause ankle problems. They get your lymph system going and assist your body in releasing toxins. I can actually only do about 10 seconds at a time and I can feel the toxins making me sick. So it is very effective.

    I replied on another thread about far infrared saunas and another member (can't remember her name) gave reasons for preferring the cabin-type as opposed to the solo sauna. What she says makes sense. I have still to decide which type to get. I know that getting one just makes sense.

    Pepper


    Edit: I just saw your second post. I am going to have to check into that information. I thought that the infrared saunas actually helped with infections! I will definitely look into that.

    Edit 2: I tried that website and it could not be found. Is it written correctly here? Thanks.
    [This Message was Edited on 09/30/2005]
    [This Message was Edited on 09/30/2005]
  19. pepper

    pepper New Member

    Thank you for your input. This lady told me to be very careful about the kind of air filter I used because most air filters that produce negative ions also produce ozone which is a very noxious gas and can make you sick. I am wondering if perhaps you were feeling the effects of the ozone as opposed to the negative ions. Do you know?

    The idea of a gluten free diet does not appeal to me either. However, I am trying it to see if I feel better. I was told that I should feel something within 3 months so I will give it that long.

    Good luck.
    Pepper
  20. tansy

    tansy New Member

    but can only manage very short times on it even on my better days. Since I only use it for the health bounce I feel the more expensive ones are not worth the extra cost atm. I too can tell it is working.

    love, Tansy