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ME/CFS is a mast cell disorder (hypothesis)

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Jul 12, 2012.

  1. camas

    camas Senior Member

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    I'm sorry that your testing hasn't gone well. This seems to be a common refrain. It's a lot of work on the patient's part, then you have to hold your breath and hope the labs handle everything correctly.
  2. triffid113

    triffid113 Day of the Square Peg

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    That is the second time you said it's treatable. How is it treatable? Singular (montelukast) is supposed to stop degranulation of mast cells but it does not work better than about 50% on me and it has side effects causing gut pain / chest pain.

    I just found this study: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2222.2009.03234.x/abstract
    which says allergies are prevented by maternal D supplementation during pregnancy and that ties in with the birth order probability of having allergies. I, fisrt born, have 'the worst allergies my allergist has ever seen' and I was born in April (after a northern winter, low D). My sisters were born in september and november after a sunny summer and have no allergies.

    So, here's my question: how many of you who think you have mast cells issues were born between december and may?
    ahmo and xrayspex like this.
  3. camas

    camas Senior Member

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    Nanonug disappeared three months ago, so I'll try to answer your question. If you click on "treatment" in my signature you'll see some of the options. Mast cell disorders are not simple to treat because they are much more complex than run-of-the-mill allergies. You can even have a mast cell disorder without having a single allergy. I think I previously gave you a link showing the 60+ mast cell mediators. Histamine is just one of them. However knowing you have a mast cell disorder does at least point you in the correct direction for treatment.
  4. antherder

    antherder Senior Member

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    I was born in spring. Baby number two. It says in my childhood medical notes that my GI/vomiting episodes were worse during the hayfever season.
  5. Shell

    Shell Senior Member

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    triffid113 I didn't know Montelucast was supposed to suppress mass cell disregulation. I'm on it (with ventolin and Seretide) and although I can't honestly say I think my breathing is much better - I;m not getting side effects either. I wonder if I do have MCAS if it is helping... I am not sure how i would be able to tell.

    I noted your question about time of year for birth. I'm and Oct baby. However I was born via c-section and had neonatal shock. I spent the first couple of weeks of life in an incubater. I've never thought about it before -- but I wonder if that did contribute to "Shambles" as I have named my disease collection.
  6. triffid113

    triffid113 Day of the Square Peg

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    Montelukast is supposed to stop mast cell DEGRANULATION. For me it stops me from feeling like ripping my head off, but doesn't do that much to stop nose and eyes running. Someone else here said it caused them symptoms of too much stomah acid (which fyi are the same FEELING symptoms as too little stomaxch acid) which stopped when they got off it. For me it caused chest/gut pain such that even the covers at night seemed too heavy. So I have been taking it on 2 days off 2 days...
  7. triffid113

    triffid113 Day of the Square Peg

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    Whew! Your link lists many things that don't work for me: Allegra, Claritin. Does not even list Flonase, which worked like a charm for me for 10 years. Lists a lot of crazy stuff like antibiotics and PPI's that Iw ouldn't touch with a barge pole. PPI's are guaranteed to make you worse...you can't digest your food properly and it's all down hill from there. I take a boatload of zinc in an attempt to cancel my allergies and keep producing ENOUGH stomach acid. No one shoudl ever EVER (and it should be a LAW) be allowed to go onto a PPI w/o stomach acid ph being TESTED because the feel of low stomach acid is the same as the feel of high stomach acid...they both irritate the gut and hurt. It requires zinc to make stomach acid and people with allergies whip through zinc as it is required to repair damaged tissues, so anyone with allergies is sure to have LOW stomach acid and PPI's will just make it worse. I take 75mg zinc/day and it was proven to be the minimum amount of zinc to effectively treat a cold, but I have found I need more like 150mg (whether because of low stomach acid and inability to absorb much therefore or because of the strength of my allergies or even because of eating a low protein diet (I am CBS +/+). It kinda scares me to take that much zinc every day so I usually stick to 75mg and now I am pursuing getting armour for my thyroid during allergy season as zinc is the dial that turns up thyroxine production to adequate levels. Taking anti depressants is just misguided...low thyroid causes depression, better to fix the thyroid.

    fyi, if your TSH >= 2.0, you are hypothyroid and need to fix it: http://www.lef.org/protocols/appendix/blood_testing_02.htm
    The lab thyroid range is NOT based on science.

    To me most of that website looks like a whole lotta making things worse.
    ahmo likes this.
  8. triffid113

    triffid113 Day of the Square Peg

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    Date of birth is only a large scale approximation of who should/should not have allergies. So the next question is whether your mother has the VDR genetic defect (can't hang on to Vitamin D) or whether she stays indoors in the summer (or did the summer she was pregnant with you).
    Shell likes this.
  9. camas

    camas Senior Member

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    That's the website of the Mastocytosis Society Canada and the drugs they list are those recommended by mast cell specialists all over the world. Because patients are so sensitive, their drug protocol has to be tailored to fit them. For those mast cell patients prone to anaphylaxis, these drugs are life saving. I know first hand because I went through three months of continuous anaphylaxis about a decade ago and would not have survived had it not been for my epipens.

    There are also patients attempting a more natural approach by using low histamine/low inflammatory diets, supplements, herbs, etc. and using drugs only as necessary. If you believe you might be having mast cell issues (beyond simple allergies) here's a link to a group of patients taking a holistic approach to Mastocytosis and mast cell activation which you might find interesting.

    https://www.facebook.com/groups/287752947987652/
    xchocoholic likes this.
  10. triffid113

    triffid113 Day of the Square Peg

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    Well, i don;t know what you mean about mast cell problems vs. simple allergies. For one thing I would never call allergies simple. Mine have warped my whole life. So much of my life has simply not been lived as I have been rendered totally nonfunctional and beyond miserable by them. All I have to do is walk in or out of a building and the change in humidity is enough to set off an attack, as is wind, or the breeze caused by ME moving, or bright light - which is not to imply that I am fine between these times. But - say - my nose might run every 30 seconds and then I go in or out of a building and it becomes every 10 seconds...my thyroid goes out (TSH > 5.5) and my adrenal gland goes out (I pass out if I do not eat salt despite 3 genes causing stage 3 hypertension normally). I have been taking 1g E/day my whole life because olympic athletes need to take that much to withstand the olympic sized stress they put on their bodies and I figure allergens put an olympic-sized stress on my body. I take 75mg zinc / day and it is not enough but my copper status is slipping due to the heavy zinc intake so I can;'t justify taking the 150mg it takes to clear up my head.

    But beyond the exception to the word 'simple' - all allergies are caused by mast cell degranulation, so...? what you say does not compute? to me anyway.

    I get that drugs are necessary to prevent anaphylaxis. So far my allergies are not life threatening except career-threatening. But I sense that is changing this year as I am getting more respiratory involvement and wonder how far down the road to asthma I am. I have had cold-indused coughing for over 10 years and did not know that was a symptom of asthma. This year my nose and throat prickle such that breathing is hurtful...
  11. camas

    camas Senior Member

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    triffid113

    Mast cells are really complex. From what I understand they can selectively release their mediators (for example histamine when you have allergies). Or they can completely degranulate and release histamine, prostaglandins, heparin, etc. and can cause a multitude of symptoms beyond allergies.

    In Mastocytosis, which is rare, you have an over-proliferation of mast cells as well as aberrant activation driven by a few rare gene mutuations. In Mast Cell Activation Syndrome, which is believed to be much more common, there is not an over-proliferation of cells, but the normal number of mast cells you do have are easily activated. The don't yet know why.

    Here's one list of symptoms that are associated with both Mastocytosis or MCAS. Of course many of these symptoms you'd associate with allergies, but others are related to the other mediators such as heparin which can lead to skin lesions, orthostatic intolerance, etc. If you have a good number of these symptoms, you are certainly experiencing more than allergies (even bad allergies) and can suspect Mastocytosis or MCAS.

    skin lesions or sores
    skin rash, spots, redness
    hives
    persistent fatigue
    itching
    flushing & severe sweating
    joint, bone pain
    headaches
    tachycardia (racing heartrate)
    eyes tearing/dry, eye pain
    persistent body/tissue pain
    difficulty exercising
    vertigo
    episodes of low body temperature
    unexplained Vitamin B12 deficiency
    scents/odors/chemical reactions
    difficult menses (females)
    numbness & tingling
    in face and extremities
    skin feels on fire
    unexplained anxiety
    sudden drops in blood pressure
    fainting
    persistent diarrhea
    vomiting
    unexplained weight loss
    cognitive impairment
    sinus problems
    chest pain
    vision problems
    hair loss
    mouth sores
    nausea
    swelling & inflammation
    odd reactions to insect stings
    anesthesia difficulties
    anemia
    thyroid problems
    decreased bone density
    unexplained weakness
    shortness of breath
    sunlight sensitivity
    temperature (hot/cold) sensitivity
    difficulty with foods, drinks
    anaphylactoid reactions
    anaphylaxis
    gastrointestinal pain, bloating
    unexplained medication reactions
    enlarged liver/spleen
    liver/spleen/bladder/kidney pain
    enlarged lymph nodes
    frequent urination
    recurring infections
    neuropathic pain
    constipation (MCAS)
    iron deficiency
    unexplained bruising, bleeding
    malabsorption
    intermittent tinnitus or hearing problems
    xchocoholic likes this.
  12. triffid113

    triffid113 Day of the Square Peg

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    Well...that also sounds like a lot of other things to me...like a combo of allergy and hypothyroid and adrenal problems and hypochlorhydria (which are all caused by allergy) etc. I have had most of those symptoms at one time or another and yet don't think that is a basis for saying I have more mast cells than anyone else...I even get ferritin deficiency from lack of zinc (used up by allergy) which is needed to turn beta caroteen into Vitamin A which is needed to ferry iron around as ferritin. Zinc isn't a magic substance...there comes a point when it is awful hard on your system to try to consantly replace what is effectively the contents of a bucket with no bottom (forget a hole, this is a like cutting an artery).
  13. triffid113

    triffid113 Day of the Square Peg

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  14. camas

    camas Senior Member

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    If you've had most of those symptoms at one time or another, you may not have more mast cells than average, but you may have more activated mast cells. Just in case you are ever interested in being tested, here's Dr. Afrin's very readable MCAS Primer for Physician's.

    As he says, "Occam's Razor has been right for 800 years now, and it's much more likely that these patients have one root problem which is biologically capable of causing all of the patient's apparent problems."
    Questus likes this.
  15. Shell

    Shell Senior Member

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    Thanks for the h/t Triffid.
    I have wondered about my asthma. The "real" asthma I have feels very different from the breathlessness and suffocation feeling I can have so often. I can't get the doctors to see the difference between an asthma attack and breathlessness or that a URT infection isn't the same as a lung infection.
  16. xchocoholic

    xchocoholic Senior Member

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    Thanks camas for keeping up with this. Sure wish I knew where nanonug went. Levafloxin fried my brain. :(

    IMO, At this point, this info is still new and will need further research but the meds aren't. The difference I'm seeing is that the number of meds is much more than the manufacturer suggests. It turned out that I needed more meds to control my symptoms.

    As for montelukast, one of them has a chemical in it that is known to cause seizures. All I can remember now is that it's one for children. I did well on it until I noticed that I was having more pre seizure feelings and needing klonopin regularly. It made breathing easier. The next one I tried had lactose in it so I just gave up ... :ill:. I'm dreading calling my doc again and ask him to change it.

    Using wal-zyr tablets is helping me but I find that taking 5 mg at a time several times a day is better if I want to think more clearly. Adding Allegra worked great when the pollen count nailed me but wasn't good for my cognitive abilities.
    Nasalcrom keeps drying me out so bad that my nose bleeds. I still need liquid Benadryl for throat swelling despite taking the other meds.

    tc .. x
  17. triffid113

    triffid113 Day of the Square Peg

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    Yes, I feel that this is right. The reason is because since I turned 50 I have found my allergies getting significantly worse...which leads me to believe more mast cells are activated. (I suppose it's possible I could have grown more mast cells over time so I'll keep an open mind).

    BTW, I found a chart that shows HLA-???2 (the grass allergy gene) is regulated by androgen. This may be the reason that my allergies got worse over 50. I don't quite get it since I take androgen (DHEA 75mg) and I even take bioidentical estrogen. But somehow I have never found a way to recreate the exact hormones I had before 50. http://jcem.endojournals.org/content/suppl/2012/06/01/jc.2012-1536.DC1/12-1536_supp_tab_fig.pdf
    (anyone know how to figure out what article this attachment goes to?)
    Another of androgen involvement in allergy: http://onlinelibrary.wiley.com/doi/10.1034/j.1398-9995.2001.056006525.x/full

    Anyone know anything about treatment of vasomotor rhinitis (which is what I have post age 50) with silver nitrite?: http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=1091780

    Also any comments on using EBV to correct rhinitis genes? http://www.cmj.org/periodical/paperlist.asp?id=LW2006619569049505335&linkintype=pubmed
    camas likes this.
  18. camas

    camas Senior Member

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    Hi X,

    Nice to see you. So sorry to hear about your difficulties with Levafloxin and montelukast. I didn't do at all well on Singulair either. More liver than seizure problems. That's the problem I'm running into with most of the meds -- my P450 pathway issues. I think that's why I do well on the Zyrtec because it bypasses that pathway. I see that Dr. Theo is working on a methylated form of luteolin that I'm hoping might also be easier to tolerate than his current mast cell supplements.

    I took your advice on taking 5mg pf Zytrec at a time as needed and that works quite well. I'm still sipping away on the yukky liquid children's formula made by Kirkland. I've had little to no paresthesia and what I call my 'crushing attacks' (probably seizures, as you pointed out) since beginning the Zrytec. I don't understand why an antihistamine would help neurological problems, but I'm sure happy that it does.

    I'm also having some luck with the low-histamine diet. My stomach no longer hurts, and my flushing and burning symptoms seem to be even more improved than they were on the Zyrtec. Now if something would just help my muscle weakness -- still my worst symptom, by far.

    Sorry to hear you are still struggling with the throat swelling. I know how damned aggravating and scary that can be.
    xchocoholic likes this.
  19. camas

    camas Senior Member

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    I noticed that my flushing and burning increased after 50. I had just assumed that I was having hot flashes, but since they have improved on Zyrtec and a low histamine diet it was obviously a histamine problem. So I think you are right about allergies flaring after 50.

    I've also made a few attempts at bioidentical hormones. The estrogen made me much worse, but I seemed to be helped a little by just occasional use of progest (like if I'm having a particularly bad day). If I take it as recommended every day though, it also makes me feel worse -- maybe a liver issue?
  20. xchocoholic

    xchocoholic Senior Member

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    I'm getting both flushing and mini hot flashes. My real hot flashes involved chronic heavy sweating to the point of needing to change my clothes. My mini hot flashes just mean I have to wipe the sweat from my face and deal with slightly damp clothes for a little bit. Flushing doesn't make me sweat but I feel hot and see the color change.

    I haven't tried any bioidenticals but my labs came back low on pregnenolone so I'm taking that. I take dhea too but I'm not happy with the occasional thick whiskers I get on my chin and the white fuzz on my face.

    Great to hear that the low hist diet is helping you. I've left paleo world and am mostly paleo with organic grains and legumes now. I was eating too many high ox foods because I was hungry and too tired to keep up with the paleo foods. So far so good. kow ..

    I stopped eating oranges, high histamine, recently too. I knew that the skins were making my lips burn but I was enjoying them too much. I'm using sugar now for blood glucose drops. It helps better than anything. Granted, I won't have any teeth after awhile but hey ... :zippit:

    tc ... x

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