1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Presentation: Lowering the Histamine Burden

Discussion in 'Mast Cell Disorders/Mastocytosis' started by camas, Nov 17, 2012.

  1. camas

    camas Senior Member

    Messages:
    698
    Likes:
    196
    Oregon
    This slide presentation by Tiffany Blackden at the 2012 Mastocytosis Society Conference is well worth the read. Her son has been diagnosed with MCAD (aka MCAS), and she is taking a holistic approach to his treatment.

    I noted that she's addressing improving methylation in her treatment. I have wondered if Rich's theory of lifting the methylation block might dovetail with treating mast cell activation. So sad that he's not around to comment on this. I think he would have found it interesting.

    Her entire presentation will appear on the 2012 Mastocytosis Society Annual Conference DVDs which the Mastocytosis Society should be releasing soon.
    nanonug likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,487
    Likes:
    5,259
    Albuquerque
    camas

    Rich cannot comment on this presentation, but I'll paste in here an earlier comment on histamine:

    richvank6/25/09 3:39 PM



  3. camas

    camas Senior Member

    Messages:
    698
    Likes:
    196
    Oregon
    Thank you for that, Sushi.
  4. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    I think this is likely the reason methylation partially helps. At some point (a few months back) I was doing some serious supplementation with methylcobalamin and methylfolate. However, using SAM-e should also work, both for methylation and glutathione production.
    camas likes this.
  5. camas

    camas Senior Member

    Messages:
    698
    Likes:
    196
    Oregon
    I've been taking methylfolate, seriphos, and a subligual b12 for well over a year since they seem to help a little with my sleep. Nothing dramatic, but worth continuing.

    I forgot to mention that Slide 10 is real show stopper. When you see the impact of histamine alone, you can come to see how everything else that over activated mast cells release could leave us so ill.
    nanonug and Dreambirdie like this.
  6. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    Indeed! By the way, I believe that slide 10 was probably "inspired" by Fig. 1 of the "Histamine and histamine intolerance" paper. Table 1 is also very illuminating.
    camas likes this.
  7. SaraM

    SaraM Senior Member

    Messages:
    501
    Likes:
    18
    Magnesium, vit C, b6, and methionine for breaking histamine. Antihistamine did nothing for me. Food avoidance is the only thing that helps . People with MCAS can be salicylate sensitive, too.
  8. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,574
    Likes:
    1,207
    Florida
    It still amazes me how we are all just so different here. I've found avoiding trigger foods and taking 250 mg b6 + mag help my pelvic pain but I can actually eat a little of my trigger foods (nuts and chocolate) and not get pain on antihistamines. I've actually gotten away with eating waaaay too much chocolate and nuts on antihistamines but I'm trying not to push it. It's
    hard to resist these when my body doesn't react tho.

    I can't take b12 without getting too wired to sleep. I had to stop my folate too but I can't remeber why now. I know that I just don't feel well during the day on these. If I had to guess I'd say it's like my adrenals are stuck in high gear and I feel energized but I don't have the muscle strength to do anything still. My brain can't keep up either.

    tc .. X
  9. camas

    camas Senior Member

    Messages:
    698
    Likes:
    196
    Oregon
    My brain can't keep up either. My liver is having even more difficulty after trying to process all the new drugs and supplements I've been testing the past couple of months. Really aching the last few days.

    I know from my 23andMe testing, past caffeine clearance tests, etc. that my liver has difficulties detoxing. But I also wonder about some mast cell involvement. I had my gallbladder removed when I was in my early 20s. It was mess - borderline gangrene and covered with adhesions. The pathologist didn't know what to make of it. Now I read that Dr. Theo says mast cells can cause adhesions. Too bad it's 30 years too late to have that biopsy stained.

    I am seriously thinking about just doing an UltraClear fast (had good results with them in the past) and then starting again slowly to try some new things.

    (Don't mind me. Just thinking out loud. lol)
  10. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    This is one of the reasons I recently decided to stop both quercetone and luteolin as both competitively inhibit several liver detox enzymes. I am just taking Normast right now.
  11. camas

    camas Senior Member

    Messages:
    698
    Likes:
    196
    Oregon
    Yeah, unfortunately it seems that most potent flavonoids are MAO inhibitors. That's may explain why some feel hyper after taking quercetin. I was moving from energized to wired, so had to drastically cut my dose of Quercetone. It's still helping my bloating, flushing, overheating, etc., but I think my liver is paying the price.

See more popular forum discussions.

Share This Page