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Does this sound like Mast Cell Issues/Mastocytosis?

Discussion in 'General ME/CFS Discussion' started by Fogbuster, Apr 24, 2014.

  1. Fogbuster

    Fogbuster Senior Member

    After many years of fogginess and going from one direction to another, I'm for the first time confident I've found the underlying cause of my CFS/ME symptoms; being primarily severe cognitive dysfunction and this horrible wired state, both of which gets worse after ingesting substances.

    So far after much experimentation the wired state has reduced quite a lot (more than the C. dysfunction) since taking out gluten and dairy(worst culprits), keeping low sugar, low veg, high starch and using schizandra. But still I am plagued with this baseline constant C. dysfunction and wired state which fluctuates throughout the day; the severity depends on what substances I ingest.

    When I eat, this is what occurs: "reaction' immediate, increased speccy/fuzzy vision, heart rate, shaking, restricted breathing, pupils dilate/constrict at super speed, inflamed nostrils, mood alteration/anxiety, wired feeling, increased irritability, cognitive dysfunction, increased sound sensitivity and aching of joints.

    I've been diagnosed with EDS 3 and TMJ.
    Been tested for Lyme, RA and MS
    Had a histamine test at Biolab, London - came back negative
    I dont get any significant skin issues


    - Body all over is constantly tremoring in varying intensities (depending on what i ingested)
    - Tensing muscles brings on rapid tremors
    - Pupils constrict and dilate at super speed
    - red patchy hands
    - Constant fuzzy/specy vision
    - General weakness/fatigue
    - Inflamed eusophagus (when I ingest marijuana and keep it in my mouth marijuana it is agony)
    - Dermatographia (only when I shower, looks like i've gone through a bush backwards sometimes!)
    - Popping ears/pressure
    - Sound sensitivity (gets much worse when I eat Gluten and Dairy)
    - stretch marks
    - Hair loss
    - Spots
    - Sometimes swollen face
    - itchiness
    - drop in blood pressure after exercise (i was noted when I was tested for POTS on treadmill)
    - Restricted breathing (gets worse after eating)
    - Rhinitis, goes when I fast
    - flushing when nervous (severity is related to how recently I ate)
    - Problems getting to sleep
    - hypersensitive stress response (gets alot worse when i've eaten, gets alot better when i fast)
    - Achy wrist and knee joints (Averagely fit but when I go up even a slight gradient on a hill on my bike my knees are in agony after only a few seconds, suspected arthritis or osteoporosis.)

    Again, pretty much all these symptoms get worse when I ingest food and much worse when I ingest the substances below (some depend on quantity)

    Things I react to/set symptoms off: (increased wired feeling and cognitive dysfunction)

    - Nuts
    - Sugar (the more the worse it gets) and (the more slow releasing the sugars the better eg bread)
    - Gluten/Dairy/Soy (Dairy: some reason cheese is worst)
    - Marijuana
    - Cigarettes (By far worst)
    - Poor sleep
    - All vegetables
    - Stress (very minor stressors set off stress response, very difficult having arguments without looking like Im about to lose the plot)
    - Alcohol
    - Antidepressant and other medications
    - Caffeine (second worst)
    - Mild intensive exercise (More than 15 press ups causes symptoms to occur and short burst of running)
    - Hot baths/showers
    - Perfumes/hair dyes
    - Most teas (even decaf, salicylates)
    - Lacto free cheese (is that strange?)
    - Smoked meat
    - Fish
    - eggs

    Your opinions and knowledge would be greatly appreciated.

    Best wishes
    Wayne likes this.
  2. Martial

    Martial Senior Member

    Ventura, CA
    Well there is a great supplement called Neuro Protek that many people use to treat mast cell activation with success, It stops the h1 and h2 receptors from reacting with too much inflammation. Similar to taking an anti acid drug and zantac which is another way to treat it, however anti acid drugs lower stomach acid and can cause a lot of absorption issues and both with their fair share of side effects.

    On another account just to let you know most testing for lyme is very inaccurate, so if you wanted to look into that you would need to go to an LLMD and get tested through IgeneX labs, sometimes the sicker patients even test negative there. I was barely positive on some cross strains of borrelia but negative on the main part of the test. Was clinically diagnosed based on having slight anti bodies and symptoms, as well as herxing from treatment. I could have had a more definitive test to look for spirochetes instead of antibodies but it was a 600$ test and I would have to stop treatment for three months to take it. If you ever opted for the blood smear test for spirochetes always take it BEFORE treatment.

    Lyme can also destroy collagen through out the body since it feeds on it, and trigger POTS both hypo and hyper, mast cell degeneration, and all kinds of other nasty stuff because it interferes with so many bodily processes, good news is it all usually settles with treatment when the system is cleared out again.

    Of course not saying lyme is the cause of anything for you either, just that if you wanted to look into it those are things to also be aware of, since most people never get properly tested. The Neuro Protek will definitely help the mast cell activation issues though, It is also used for CNS protection and a few other things, and is a great all around anti oxidant as well.

    Here is a link for the Neuro Protek

    P.S. it definitely sounds like there could be some mast cell activation issues, especially when you mentioned the low blood pressure during exercise, have you gotten any formal testing for it yet?
    Wayne likes this.
  3. Allyson


    Australia, Melbourne

    is it just post prandial worsening of POTS symptoms do you think JD ?

    lots of us EDSers get that as do POTsies - you eat , blood goes to digestive system so less blood available for heart brain etc - and then in addition to feeling bad from that you get a huge release of adrenaline too and get all its side effects - including clenched muscles ....hence the TMJ etc

    also have you tried a low FODMAPS diet - that helps with IBS a lot and have you done a lactose tolerance test to see if you are lactose intolerant?

    Alcohol is bad for us as it is a vasodilator so has the same effect - there is more in this thread on that and more that maybe of help - good luck

    and caffeine, though a vasoconstrictor so helps in small amounts is also a simulant and so exacerbates the flight or fight issues sparked by the adrenaline

    Last edited: Apr 24, 2014
  4. Allyson


    Australia, Melbourne
    I also suggest you look at posture in relation to your symptoms - are you worse after being upright JD - egg if you are up for several hours one day are you ill the next - OI can be the cause of many of those symptoms have you been tested for POTS?

    Nearly all your symptoms sound typical of EDS 3 which is not just joint hypermobility as many think but affects all your connective tissue in the body and often is a cause of POTS



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