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Has anyone improved MCAS symptoms by treating underlying infections?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by bspg, Oct 18, 2017.

  1. Learner1

    Learner1 Forum Support Assistant

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    Maybe your doctor was wrong about the IVIG.

    Healing the gut is critical, though. Is there a gastroenterologist or functional medicine doctor that can help you?

    We are all complicated patients, and it takes a step by step peeling of many layers of this onion to make progress.

    You might also look into Gingergrrl's story. Her MCAS was awful and she has been able to improve.
     
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  2. Jasper80

    Jasper80

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    Maybe he is. But how to figure out? I have no idea.

    I have one who tries. It´s really difficult, but we are just the half Way through. So...

    I´ll look into Gingergrrl´s Story. Thank you very very much :)
     
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  3. Learner1

    Learner1 Forum Support Assistant

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    Try handing him the case study? I've been on a similar protocol and it's been helpful. I didn't have SIBO, but had 7 chronic infections, so we a recall a bit different.

    As for your gut, things you might look into might be a stool test to look for parasites, fungi, and bacteria. Testing for Enteroviruses might be useful. L-glutamine, an elemental diet, digestive enzymes, fecal transplant, and probiotics all may be able to play a role.

    And are you on any mast cell drugs that help?
     
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  4. Jasper80

    Jasper80

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    He is a MCAS Doctor. One of the few in Germany. I will ask him again. Did the IVIG help with the infections? I do have some Infections too and I have no Idea how to treat them.

    I got everything tested multibal times. Candida is for sure and it produces lots of bad stuff. I tried the elemental diet for my sibo and fed the Candida all the Way with the sugar :( I Try it all, but it´s rough because I can´t stop eating carbohydrates. My Body Needs the energy. If not I Crash.

    I tried them all, but i don´t tolerate any. Only Tavor and Zopiclon helps sometimes. But nothing for everyday.
     
  5. Learner1

    Learner1 Forum Support Assistant

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    Yes, the IVIG helped with the infections, along with appropriate antivirals and IV antibiotics (to avoid messing up my gut). I wasn't making headway with the infections without the IVIG.

    I've also benefited from customized nutrient IVs. My doctor did a Genova Diagnostics NutrEval test and found I was very depleted in many nutrients. One of my infections is notorious for sucking up nutrients. The IVs have been vitamins, minerals, and amino acids with saline, not dextrose or glucose. I was under the impression that certain cancer clinics in Germany could do them.

    I'm allergic to all milk and corn derivatives which are in almost all of the MCAS meds, so I have to have them compounded. Except, I can get injectible Benadryl and use that. I also get a lot of B5, folate, B12, vitamin C, boswellia, curcumin, and quercetin, which help, both IV and orally.
     
  6. Jasper80

    Jasper80

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    unfortunately boswellia and curcumin are salycilates, which I don´t tolerate. As well as Quercentin.

    Vitamines is such a Thing as well. It´s quite hard to figure out hw much, which ones in which form. The one Can help the other may harm. I have infections, that suck my nutrients up as well. I feel it.

    Whatfor is the B5 in your case?

    Curcumin would be so lovely. It was tested good for my inflamation. But my MCAS sees it different
     
  7. justy

    justy Donate Advocate Demonstrate

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    Yes, i hear you on this!

    I'm always sad to hear anyone say this, but my situation is the same as yours and i know i am also at the end of my road. I cant keep searching because trying anything is making me worse year on year. I now only tolerate 8 foods, and still react almost daily to some of these or other things that get into my environment. I keep catching things and the viruses, colds etc keep setting off my mast cells, making it almost impossible to eat.

    How expert is you MCAS Dr? i'm very interested in hearing more about the Dr you see and the Bonn centre - although I understand you dont have any info about the drugs. If and when you do get info on the drugs etc please let me know. Or contact me by PM about your Dr.

    This is a massive problem for me, and people often give advice - you could just try this or that, when i literally can barely eat, let alone risk trying anything new!

    See my post above. Im in the same boat as Jasper and couldnt take probiotics at all, nor most supplements. If i react to them i might lost more foods. Zero point in testing for viruses, parasites, fungi etc when you can do literally nothing to kill them. No idea what people like us are supposed to do...

    Yep, me too - one tablet of curcumin and two hours later i was rushing too the loo with severe gut pain that went on all night - i wont say more about it for fear of TMI, but sadly me and curcumin do not mix.
     
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  8. Learner1

    Learner1 Forum Support Assistant

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    Figuring out vitamins is not a do-it-yourself project, especially when one is so ill. Pathways shut down and things don't work, leading to all the many symptoms. It takes some expertise in biochemical nutrition to untangle the mess.
    As my doctor explained it, it speeds up metabolizing the mast cell products, so I can get rid of them faster.
    We all have to find what works. I've found getting purer versions of things into my veins rather than trying to ingest them through products with extra ingredients works better.
    I hear your pain and frustration. Having gone through cleaning up my gut from undiagnosed celiac, MCAS and multiple food allergies, a whopping candida infection, shigella, chemotherapy, and the aftermath of ciprofloxacin a few years back and an oral triple antibiotic regimen last year, plus dealing with my children's undiagnosed celiac, multiple food allergies, norovirus (which required hospitalization), roundworm, hookworm, pinworms, and blastocystis hominis, I agree it's vexing and challenging.

    First, if you have a parasite sucking up your nutrients, it can be devastating. Finding any and removing them is essential.

    Second, if your gut lining is damaged, you're going to be leaking particles of anything you eat into your bloodstream so that your immune system (mast cells, etc.) will react in one way or another, so feeding the gut lining is a critical step. Even my oncologist recommended 15g of l-glutamine a day for this purpose.

    Third, if you can't take in nutrition, biochemistry begins to shut down, leading to problems ingesting salicylates, etc.

    If I were in this situation, I'd look at cleaning everything out of my gut, as if for a colonoscopy, getting nutrients by IV (with a doctor's help) and getting glutamine and glycine into my gut.

    If what's living in my gut was so bad, than I'd look at getting a fecal transplant. It is beyond experimental where I live. And then carefully adding in probiotics of different types, with adequate insoluble fiber to feed them. Along with betaine HCl, digestive enzymes, etc.

    Then, calming the immune system down and slowly refeeding.

    None of this is easy to do, its extremely difficult, and needs expert guidance. The conventional gastros are little help. But from battling these issues over the past 10 years, I believe that progress can be made with thoughtful application of the right expert help. And its the path to survival.

    I am so sorry you are experiencing this... It is truly difficult.
     
  9. MTpockets

    MTpockets

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    I totally agree with Learner1. It has taken me YEARS of trial and error and extremely restrictive diets to heal my gut. The l-glutamine was key as well as digestive enzymes, milk thistle to stimulate my gall bladder, probiotics, and careful supplementation. I had 4 safe foods for a whole year. But very slowly things started to change and now my safe list has so much variety.

    I still have trigger foods and I still get mast cell flares, but it is a journey worth taking. My over all health has improved noticeably since my gut has healed. I am even able to tolerate very low doses of antivirals, antiparasiticals, and antifungals now. I honestly never thought that would ever happen. Go slow. Keep your epi pen handy and see what you can do.

    As a side note there are probiotics that actually help with MCAS. Most of the Bifidus family actually helps. They are the only ones I can tolerate. I get flares if I deviate from my safe strains. Keep fighting!!
     
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  10. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    ,
    There's an interview with (IIRC) Dr. Theoharides wherein he says just that. Switch to soil born types like Bifido.

    Also said that although the 'diversity' is much vaunted generally (as by Grace Liu, et al.) in probiotics, for anyone reactive they should instead try single strains since there is less diversity to react to - either in the bacteria's little bodies or in their chemical products. There was a strain of lactobacillus mentioned, which I unfortunately don't remember.
     
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