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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Hoping for some advice, fairly new here

Discussion in 'General Treatment' started by renerdrat, Apr 27, 2015.

  1. renerdrat

    renerdrat Every teardrop is a waterfall

    So I've been browsing this site quite a bit, I'm not sure how I never came across this site before, well apparently I signed up but never used it.
    Anyway sorry this is kinda long, I figured I'd try to explain enough as possible and see what people might think. Am open to any and all ideas in the road to recovery so if you have anything at all you feel like might be of help feel free to respond.

    I'm not even sure I really have cfs but I feel like it's the closest thing. The biggest things are...

    • huge mental fatigue
    • extreme apathy
    • physically my fatigue isn't too bad, unless I overexert myself. I can normally run for a little while and be fine.
    • hyper vigilant... I'm always feeling wired and tired. Startle response is extreme, it's gotten to the point now where even if someone just grazes me, I have a started reflex.
    • persistant cough/ sore throat but that seems to have only developed in the past year and comes and goes
    • unrefreshing sleep, and also insomnia
    • Very sensitive to supplements, think I have high histamine, have hives a lot, and many foods that are acidic, (do not do well with things with lemons or vinegar unelss in small amounts) b12 specfically seem to be too stimulating and worsens my insomnia, same with magnesium, vitamin c, and some other ones.

    I actually do seem to tolerate b6 well and helps with the sore throat and high histamine symptoms, as long as I don't take too high a dose. methyfolate I can't really tell if it does anything, been taking it for months, take a 5mg dose everyday.

    I would say at the beginning which was about 5.5 years ago things were at the worst.. they didn't get any better and I was hardly functional till I really started eating very healthy (low carb, gluten free, a very balanced diet).

    I seem to tolerate alcohol fine, I can drink quite a bit, which I'm not sure if that means anything, like shouldn't my ability to detoxify be hindered? I dunno.

    From reading my dna results from genetic genie I am heterozygus for a1298c I have no mutations on c677t
    then my other mutations

    Here are your homozygous mutations as indicated in your SNP gene table above (not including MTHFR):

    • MAO-A R297R
    • MTRR A66G
    • CBS A360A
    Here are your heterozygous mutations as indicated in your SNP gene table above (not including MTHFR):

    • VDR Bsm
    • VDR Taq
    • MTRR A664A
    • BHMT-02
    • BHMT-08
    Also according to my promethease report I have a "2 - 4 fold increased odds of developing V617F-positive MPN A Promethease user who has this rs12340895(G;G) genotype has reported that they have mastocytosis" ... which makes a lot of sense considering how bad I react to things.

    So from what I've read I have a predisposition to having higher levels of ammonia and low bh4. I've read a lot about it and am thinking of cutting out protein and sulfur foods... Has anyone have experience with this?

    Anyway thanks for reading and would definitely appreciate any and all advice, even if it doesn't apply directly to this I am always open to new ideas and love learning.
    oceiv likes this.
  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Hi, I may be wrong but from what you said I don't think it does sound like you have ME/CFS, many issues have those symptoms. I just want to say to you that if a low carb diet has helped you could have something like hyperinsulinemia and in this was the case having a good amount of protein in the diet then becomes more important as things like meats helps s low down absorption of the carbs.

    One of my specialist calls hyperinsulinemia the "Pandora's box of illnesses" as it can cause so many different symptoms as it can affect a lot of areas of the body (he is one of the forerunners in this area)... eg with my hyperinsulinemia if I have too many carbs I get a sore throat as it seems to knock my immune system around too.

    You may want to ask your doctor for a two hour glucose tolerance test with the insulin levels included just to make sure you don't have this issue. (carbs are nearly in everything, my diet I need to be on is stricter then a diabetic diet as I majorly react to carbs). Most doctors are not aware how badly abnormally high insulin affects some people.

    If you have got an issue with mastocytosis, that can cause some exercise intolerance too and of cause those mast cells can be building up anywhere in the body so that too can affect all kinds of things.
    Last edited: Apr 27, 2015
  3. renerdrat

    renerdrat Every teardrop is a waterfall

    hey thanks for the reply... yeah as I was saying I don't really know what I have, I don't really think I have cfs specifically but just many symptoms except.. well the 'constant sick feeling' ... which I guess is one of the main symptoms, but I know that much of the information from this site has been quite helpful so I thought people here could give me some advice.

    Um.. well that was just what I initially started that helped me, but I don't actually follow low carb now, I mostly just eat a balance of .. 60% carbs 20% protein 20% fat. The low carb helped when candida was really bad.

    I've been checked for all kinds of major illneses including diabetes my insulin levels were normal.
    Last edited: Apr 28, 2015

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