Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Seeing a significant improvement

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by singinggem, Sep 15, 2017.

  1. singinggem

    singinggem

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    Hi everyone,

    I've seen a significant improvement in my overall condition in the past few months so I thought I would share what I've been doing. To fill you in on my background I have had ME for 13 years; I was very bad for the first few years, for the past 6 I have been able to work part time but the symptoms were still often disabling and always present. I also have ehlers danlos, pots, Gilbert's syndrome and endometriosis.

    So the first supplement I found that started to actually increase my energy (and believe me ive tried lots!!) was liposomal vitamin C from Livon labs. Over the years I have had very poor tolerance to supplements but this I seem to tolerate. I also had severe food intolerances and was eating a very restrictive diet for the first few years, I could not tolerate probiotics as they would bring on a bad relapse. However, I was able to tolerate actimel though initially I just had one a week. I noticed that when I had actimel I could tolerate sugar - previously ingestion of sugar brought on flu-like feelings. Gradually my reactions to food seemed to be less severe if I took actimel but would return if I stopped it. Yes, I know it's full of sugar and is a commercial supplement but I have tried many others and just not been able to get anywhere with them so I've continued with it. Lately I've added in a probiotic chocolate ball from bioglan. The first time I took it I felt a profound sense of wellbeing hours later but then had a crash and my typical reaction. I hadn't had an actimel in about 10 days so the next time I took it with the actimel and the physical reaction was far less severe and the sense of mental wellbeing was still there.
    The second thing I have been doing which I think is very important if going on the sunbed. I had a severe vitamin d deficiency which was only picked up by the gastroenterologist. The test at the GP's had come back as being ok however the gastro literally said that these tests were useless and the only valid ones were carried out in the hospital where the blood is spun an hour after having been taken. This test showed my level as being only 11 (meant to be between 30-100). I could not tolerate supplements so the sunbed was the only option for me. I know there are skin cancer concerns but there are more risks of cancer associated with low vitamin d so I've decided to take that risk. I try to keep my exposure relatively low though with 4 mins every 3 days. I believe the sunbed has made a huge improvement to my health.
    Thirdly , I started doing Epsom salts or Dead Sea salt baths about every 5 days. I generally feel dreadful afterwards but since it has coincided with a period of improvement I'm continuing!
    I am now finding that my reactions to supplements are not as extreme and I am convinced this is due to the combination of the above. Interestingly a gut test I had recently showed that I had lactobacillus bacteria missing which is the bacteria in actimel.
    Fourthly, I have also started attending Feldenkrais classes every week. It's hard to describe what Feldenkrais is but many people with ME would be able to do it. It involves very small movements (often whilst lying down)which give you an almost meditative awareness of your own body. It feels like it opens up the body and I feel less aches and pains afterwards.
    Finally - make sure I drink 2 litres of water a day.

    So I know none of this is revolutionary and probably stuff everyone has heard before but i just wanted to share in case it can be of help. I suppose the key thing is everything I did was relatively small and inexpensive! Small doses and nothing on a daily basis.
    To give you an idea of where I am now energy wise - I recently went to a conference in Stockholm for 5 days and didn't have any crashes. That was previously unheard of for me. For the first time in 13 years I can actually feel my world expanding.
     
    zenzen, JayneM, hinterland and 12 others like this.
  2. PatJ

    PatJ far and free I gaze

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    Have you tried cool or even cold bath water? If you have OI problems then a hot bath with the addition of a muscle relaxant like epsom salts/magnesium is a recipe for feeling miserable from dilated blood vessels.
     
    singinggem and sb4 like this.
  3. singinggem

    singinggem

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    You're probably right.......will have to build up the courage to do a cold bath!
     
  4. gettinbetter

    gettinbetter Senior Member

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    It is nice you are improving

    Liposomal Vit C hyped me up terrible
    I wonder why you tolerate it and I can't
     
  5. singinggem

    singinggem

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    My belief is that it could be our gut bacteria that is the key to tolerance and hence the reason why there is no one fit for all. I can only tolerate the livon labs one mind you.
     
    Little Bluestem likes this.
  6. gettinbetter

    gettinbetter Senior Member

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    I am skeptical of that because I have been using probiotics for a long time
    How would one test that?
     
  7. singinggem

    singinggem

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    Or then it's due to the vitamin d or a combination of all of the above! I don't know how you would test it just giving my anecdotal experience for what it is worth. The fact is for me when I'm doing all of the above my tolerance for a number of things is improved.
     
  8. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    It is always wonderful to hear that someone is improving. :thumbsup: I share you sentiments about cold water baths. :nervous:
     
    singinggem and Skycloud like this.

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