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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. camas

    Does this sound like MCAD?

    It could be MCAS based on your symptoms (I have all of those, too) and blood tests. I'm attaching Dr. Afrin's paper Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome for you. It's kind of long, but there are tables at the end that summarize everything. It's usually a...
  2. camas

    Histamine Elimination Diet

    I'm not sure. Are you also trying to eliminate foods to which you might also be allergic? If not, I'd just follow a basic low histamine diet for awhile and see how I felt. I've been following the diet in my signature for about a year now. My improvement was slow and cumulative, but I could tell...
  3. camas

    Antihistaminic flavonoids: Quercetin, Rutin... especially Luteolin

    It is hard to understand how so many docs miss such obvious symptoms. They did in me, too, even though I'm covered in spots and often flushed right in front of them! I sympathize with your burning feet, I sometimes get it in my hands and it's miserable. I've discovered that Benadryl cream...
  4. camas

    Testing for Mast Cell Issues

    I was already avoiding a number of high histamine foods without realizing it because of a burning sensation and flushing of my mouth/skin and sometimes throat swelling -- pretty immediate reactions. But I must have had some latent reactions from other foods I was eating, because when I started...
  5. camas

    Testing for Mast Cell Issues

    Thank you @Aerose91. I believe that Dr. Castells has said that she believes MCAS is reversible and Dr. Afrin seems to think that with the right treatment MCAS patients can be greatly improved. I think it's a matter of tailoring the treatment to fit the patient. We just need more of these good...
  6. camas

    Testing for Mast Cell Issues

    Hi ahmo, I haven't been able to tolerate quercetin, neuroprotek, etc. The only supplements I'm using are mag, vit c, vit K2 (to move calcium from the blood to the bones since calcium triggers mc) and the herb feverfew which has some of the same mc stabilizing components found in neuroprotek. I...
  7. camas

    Testing for Mast Cell Issues

    I watched my late husband go through bone marrow biopsies and they weren't pleasant. Plus the biopsies are really only helpful in diagnosing Mastocytosis which is rare. In Mastocytosis there is an overproliferation of mast cells. In MCAS the number of mast cells is normal, but the cells are...
  8. camas

    Testing for Mast Cell Issues

    Hi Xhale, I've attached a paper from Dr. Afrin who is an expert in MCAS. At the end of the paper are tables listing the tests that can help rule out MCAS. Like ahmo, I have no plans to get a bone marrow biopsy. There are other tests which can be run though, but require a knowledgeable physician...
  9. camas

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

    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...
  10. camas

    Wondering what tests to get done.........

    Hi Spinney Lainey, If you are looking to rule out an MCAD (mast cell activation disorder) then you can find a list of the suggested tests on page 52 of the attached document. I'm not sure where you'd have these tests done in London. I'm sorry to hear about your severe muscle weakness. That has...
  11. camas

    Can i treat mast activation without taking anything that affects stomach acid?

    Yeah, if it ain't broke, don't fix it. :-) I can't tolerate any of the H2 blockers, so they aren't part of my regimen. Holy Basil is a natural H2 blocker and there may be others you could try. From what I've been reading treatment seems to be really individualized because we all have different...
  12. camas

    Have been very ill for 3 years since MRSA/ odd "episodes"

    So sorry for all you are going through @Goimurph. Bone pain, food reactions, GI issues, elevated ANA, and MGUS can be related to Mastocytosis. It might be something to ask them to rule out. There are a bunch of links about Mast Cell Activation Disorders (Mastocytosis and MCAS) in my signature.
  13. camas

    Mast Cell Activation Syndrome (MCAS) Primer for Physicians

    Hi EMilo, I've attached the more recent version.
  14. camas

    How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

    @kisekishiawase, My doctor didn't know what to recommend. He's as confused as I am. I decided to stop using the lamp and will get retested in a few months to see if it was affecting either number. In the meantime one of the things I'm doing is taking vitamin K2 to help move calcium out of my...
  15. camas

    How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

    Here were my latest results: Vitamin D, 25 Hydroxy: 13.6 (Standard Range 30.0 - 100.0) Vitamin D 1,25 Dihyroxy: 64 (Standard Range 15 - 75) I've tried a handful of different Vitamin D supplements and can't tolerate even low doses because they hype up my immune system (or degranulate my mast...
  16. camas

    On path to recovery.. Finally

    So good to hear @commonsense! I've been following (for the most part) a histamine and tyramine restricted diet for about nine months and have also seen improvement. I'm doing it to try to lessen my histamine load because of leaky mast cells. I probably couldn't run to save my life :), but my...
  17. camas

    Testing for Masto and MCAD at MD Anderson

    There does seem to be an overlap between hyperPOTS, EDS (usually type III) and mast cell disorders. Have you been to www.prettyill.com? Dr. Diana is a good resource for people with EDS and she does mention mast cell issues in some of her videos. There is also a forum there where you might find...
  18. camas

    Problems with Histamine-releasing Foods

    Yeah, no pumpkin pie for me this week! For the most part I'm following a histamine and tyramine restricted diet from the Canadian Mastocytosis Society (see low histamine diet link in my signature). Since starting it, I've had a nine month plateau of being fairly functional. I'm still disabled...
  19. camas

    Testing for Masto and MCAD at MD Anderson

    Hi @stayhealthy4, Perfume, smoke (of any kind), and alcohol are three of my major triggers, so I can sympathize. I've attached Dr. Afrin's paper on how he diagnoses MCAS. It's kind of a dense read, but there are tables at the end you can skip to that summarize everything.
  20. camas

    Vacinnes and mast cell activation

    There are a number of H1 and H2 blockers you might test if you didn't do well with Claratin (I didn't either!). Sometimes the problem is due to dyes and fillers. At first I could only tolerate liquid Zyrtec, but now I can also use dye-free Benadryl as needed. Obviously I'm not a doctor, so...
  21. camas

    Vacinnes and mast cell activation

    Sorry to hear you are so ill, Mindy. I know how hard it is to be able to tolerate so few foods. I really don't know anything about methylation, but many things may trigger mast cells including supplements and vaccines. There is a link in my signature about possible triggers, although what...
  22. camas

    cataplexy association with MCAS??

    Well, you'll never be alone on this site. :) Sorry for all you are going through. I know how rough it can be. If everything neurological has been ruled out (M.S., etc.), I can see why you are leaning towards MCAS. I don't have any particular source of information on anaphylaxis, but you might...
  23. camas

    cataplexy association with MCAS??

    I was thinking that if your blood pressure dropped dramatically during these episodes that it might point to anaphylaxis. I don't know. I do get what I call "crushing attacks" where I feel tremendous pressure all over my body and can barely move, although I can think and speak okay -- I just...
  24. camas

    Xanax Improves Energy?

    I noticed this paradoxical response to temazepam years ago. I also had the same reaction on low doses of klonopin. Turns out that I have a mast cell disorder and benzodiazepines like xanax, temazepam, and klonopin are mast cell stabilizers. Just another angle to consider. :-)
  25. camas

    cataplexy association with MCAS??

    That sounds pretty scary. I searched the facebook masto groups and found no references to cataplexy. Muscle weakness and brain fog are not unusual in MCAS though, and anaphylaxis can manifest in different ways -- like overwhelming sleepiness or weakness. Has anyone checked your blood pressure...
  26. camas

    Porphyria anyone?

    Yes, I've heard of porphyria. Here's a good resource: http://www.porphyriafoundation.com/ I hope your doctors have you feeling better soon!
  27. camas

    Quercetin Is More Effective than Cromolyn in Blocking Human Mast Cell Cytokine Release and Inhibits

    If you google the half-life of quercetin you get some interesting results. It looks like how quickly it clears might depend on what else you are digesting at the time. One site says it has a half-life of 3.5 to 28 hours. Others say the half-life is 24-28 hours. If I were to do it over again, I'd...
  28. camas

    Quercetin Is More Effective than Cromolyn in Blocking Human Mast Cell Cytokine Release and Inhibits

    I believe that quercetin, like caffeine, is an adenosine antagonist. I felt good on Quercetone for about a week, but apparently it has a long half life and built up in my system and left me feeling really wired. My doctor suggested using a much less potent quercetin in small doses, but I haven't...
  29. camas

    Niacin - Why am I not flushing??

    Ema I hope someone can solve this mystery for you. I hadn't heard of niacin reducing histamine levels. I may have to give this a try. Thanks! :)
  30. camas

    Managing histamine

    Mindy There is a 24 hour urine test for N-methylhistamine. It requires careful collection and storage by both the patient and the lab -- has to remain refrigerated or the histamine breaks down. You really need both a doctor and lab who know what they are doing for this test. I've had some...