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Have Mast Cell Treatments (Other Than Avoidance) Worked For Anyone?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by slayadragon, Feb 10, 2014.

  1. slayadragon

    slayadragon Senior Member

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    I have heard an increasing amount about the idea of the issue of mast cells problems being related to ME/CFS over the past few years, but am not sure if this so far is a hypothesis or if people are actually succeeding with treating this with drugs or in other ways. And I don't have time to read through all the threads on this forum.

    So I'm wondering if someone would be willing to summarize what experiences people with ME/CFS have had using this approach. (Other than, of course, avoiding problem substances, which obviously can be helpful to people with this disease.)

    Thanks much for your help!

    Best, Lisa
     
    Last edited: Feb 10, 2014
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  2. soulfeast

    soulfeast Senior Member

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  3. soulfeast

    soulfeast Senior Member

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    Bacteria, virus and fungi all activate mast cells by 3 different ways.

    - Compliment - bacteria have their own pathway

    - Toll like receptors in mast cells directly recognising bacteria

    - Bacteria eaten by phagocytes - present the bacteria bits on the surface ( to toll like receptors ) and to t cells activating them .T cells can directly activate mast cells . In the case of virus' -T killer cells .

    -if bacteria has been in before antibodies will be present and will swing into action immediately as will t memory cells .

    Josie has a helpful site: http://www.iamast.com/triggers/4564744723
     
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  4. soulfeast

    soulfeast Senior Member

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    Mast cells do not have to cause CFS to be a problem.
     
  5. Martial

    Martial Senior Member

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    Usually treatment involves shutting down the allergic response receptors H1, and H2.

    I use NeuroProtek which works for this, I don't know any other supplements that do it but I am sure they are out there.. Actually I use mine for allergies rather then Mast Cell activation issues though.. The ingredients are also nothing really special but I guess they work at shutting down both allergy response systems without needing to take zyrtec and Zantac.
     
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  6. slayadragon

    slayadragon Senior Member

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    Thanks. I do have somewhat of an idea about the theory of this and am more interested in the experiences that people have had. What kind of improvements have you experienced as a result of the NeuroProtek? Has it made a big difference for you?

    Thanks much for your help.
     
  7. camas

    camas Senior Member

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    Hi Lisa,

    I've attached the paper of Dr. Afrin who is an expert in MCAD (mast cell activation disorders). If you go to the very end there are tables with his drug recommendations. Treatment is individualized depending on what you can tolerate. He usually recommends first trying an H1 and H2 blocker along with a benzodiazepine because they are mast cell stabilizers. And also aspirin or an NSAID if you can tolerate them.

    That's pretty much what I'm using - Zyrtec, Pepcid, and Klonopin. I was only recently able to tolerate Pepcid and this combination does help. Although, all-in-all I think following the low histamine diet in my signature has been of even greater help.

    As far as improvement, I'm not burning/flushing/itching as regularly and my muscle weakness, shortness of breath, and PEM are improved. The effects have been sort of cumulative since I started the diet last spring. I've had only had a handful of bad days since then and have been able to be more active. I can stand long enough to do cooking and chores and lately have been able to walk a half a mile or more a day. I even spent the last three days shoveling snow without much in the way of PEM. I'd say my functioning has gone from about 30% to around 50% or maybe a bit more. I still spend the rest of my time on the couch. The treatment is no panacea, but after 25 years of illness, I'll take any improvement I can get.

    I should probably add that my doctor and I believe my CFS was actually just undiagnosed MCAS/Masto. A little over a year ago a dermatologist gave me a clinical diagnosis of TMEP mastocytosis so that finally gave me something more concrete to go on. I've seen more than a few former CFS/FM patients on masto boards.

    I hope this was of some help.
     

    Attached Files:

    Last edited: Feb 10, 2014
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  8. xchocoholic

    xchocoholic Senior Member

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    I have chronic inflammation and some of it I know comes from eating certain foods.

    My allergy skin prick tests from 10? years ago showed that I'm allergic to most things on the test in varying degrees.

    I already avoid gluten, dairy, corn, soy and most chemicals so adhering to The low histamine diet doesn't interest me. At least not now.

    When I first started taking Wal-zyr (Walgreens zyrtec) I had relief from the inflammation and felt great.

    It took awhile, month ?, for me to realize that this was making it harder for me to think clearly. I don't do well with most meds that cause drowsiness.

    I'm currently avoiding those foods I know are problematic Kombucha, vinegar etc and taking 1/4-1/2 tap children Benadryl
    at bedtime. Any more than that and I can't function the next day.

    I don't know how common over sensitivity to these types of meds is in pwcs. I thought I'd heard Cheney say it was common.

    hth .. x

    ps. Wanted to add that I'm a celiac with history of ataxia, failed Rhomberg from 1990-2006, brain lesions and have other damage. Lbbb, lung scarring, myoclonus, seizure disorder, OI, etc. . At 58 years old, I don't expect to recover from eating gluten for 50 years. Sixteen years of that was post gluten ataxia onset.
     
    Last edited: Feb 10, 2014
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  9. Radio

    Radio *****

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    The key to the mast cell problem is diet..Also, We need to the protect mitochondria from cytokines and other inflammatory mediators.

    1. Low histamine chef diet...http://thelowhistaminechef.com/

    2. Lipid Replacement Therapy http://www.amazon.com/Energy-Chewable-Wafers-Factor-Lipids/dp/B00DMINPRM

    3. Methylation / Mineral support (Fredds protocol)

    4. Sulfate / Hydrogen sulfide / PST sulfation pathway (The Mast Cell Activation Link)?

    5. Fully recover and change the world

    Sulfate deficiency?
    Check it out...Heparan sulfate regulates ephrin-A3/EphA receptor signaling...The Eph receptors form the receptor tyrosine kinases.The tyrosine kinase network regulating mast cell activation. Heparan Sulfate deficiency could be a factor. I don't have time to post this.. but i do see a connection. o_O
     
    Last edited: Feb 10, 2014
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  10. slayadragon

    slayadragon Senior Member

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    Have you benefited yet, Radio?
     
  11. Radio

    Radio *****

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    Have you benefited yet, Radio?

    Yes...I have fully recovered from CFS... I working on changing the world as we speak...:thumbsup:
     
    Last edited: Feb 10, 2014
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  12. Martial

    Martial Senior Member

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    @slayadragon yes absolutely! it helps protect my nervious system and neurons from bacterial infection ( I have lyme) and it is also used to shut down the allergy response which works for food allergies, chemical allergies, hay fever, rhinitis, asthma to a degree but I do not have that.. It functions both as allergy prevention from digestion and environmentally.

    The other biggest improvement in food allergies I have had, or other gastrointestinal issues has been supplementing with Betaine Hcl with pepsin at each meal... This helps raise stomach acid to fully digest food in the stomach, usually food allergies occur when the stomach acids do not fully dissolve food and it ferments in the stomach, as well as leaky gut.

    To be honest I do not know how bad I had food allergies though, I definitely did develop chemical sensitives along the way somewhere that has resolved now...

    Freddd's protocol is another way to overcome multiple chemical sensitivities and allergies for the most part..

    I also follow a good diet through a nutritional expert named Chris Kresser, sure some on here have heard of him.. He runs a site called health revolution and has the most up to date and actual real facts on nutrition I have ever seen! I also have a large background in nutrition and fitness and can definitely vouch for it!

    http://chriskresser.com/
     
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  13. ahmo

    ahmo Senior Member

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    I've not been tested for mast cell disorder, but am histamine intolerant, prone to skin disorders, but not anything close to anaphylaxis. I've followed lowhistaminechef's suggestions, adding rutin and royal jelly to the quercetin I'd been using. Also adding nigella oil to my skin cream. And I've switched my probiotics in accordance to her research. You'll find at her site a 2-part interview w/ Dr Castell(?), the first part in transcript, the second audio only. In the audio she talks about H1/2 drugs. She points out that they don't work prophylactically, which is how they tend to be prescribed.

    I've recently been doing coffee enemas. Ive discovered that my jitteriness, spaciness, and irritabilty are not due to the caffeine, but to the ammonia and histamines released in the process. I now take rutin and royal jelly immediately after the coffee, and have really minimized my negative reactions. I've found Dr. Theohardis presentations really useful, particularly the vid re mast cell disorder dx and 'brain allergy'. The brain allergy/autism research suggests B12 and L-carnitine fumarate, per Freddd's Deadlock Quartet, may well have a significant role in protecting the mitochondria. Best, ahmo
     
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  14. Martial

    Martial Senior Member

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    @ahmo I would be very careful with the coffee enemas, alot of people end up with infections, sepsis, severe electrolyte imbalances, colitis, brain abcess and a host of other medical emergencies.. Frankly I am surprised this is a treatment that is so quick by so many alternative health practitioner's without warning.
     
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  15. ahmo

    ahmo Senior Member

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    Thanks Martial. I am, indeed, being very careful.
     

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