Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Histamine and Encephalomyelitis

Discussion in 'General Treatment' started by nanonug, Nov 3, 2012.

  1. nanonug

    nanonug Senior Member

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    I just posted abstracts for these two papers on the "Other Health News and Research" section of the forums:
    Together, these papers suggest and important role for histamine in the modulation of blood-brain barrier permeability and how increased permeability leads to encephalomyelitis.

    It is no secret that I am fairly convinced that ME/CFS is simply undiagnosed Mast Cell Activation Disorder. As histamine is one of the mediators released by mast cells, blockade of the appropriate histamine receptors should help deal with the encephalomyelitis part of ME/CFS. These papers, taken together, suggest that blockade of the H2 receptor may help prevent/attenuate encephalomyelitis.
     
  2. Waverunner

    Waverunner Senior Member

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    So does this mean that taking H1 antihistamines is a bad idea? Antihistamines are histamine antagonists. According to the first study we would need a H1 agonist to decrease BBB permeability?
     
  3. nanonug

    nanonug Senior Member

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    To be honest with you, I don't have good answers for your questions. From those papers, it seems clear to me that blocking H2 should help. However, it is not entirely clear to me if not blocking H1 helps "even more". Starting today, I am going to just take famotidine (40mg, three time daily - fairly "decent" dosage) and see what happens.
     
  4. Carla-nl

    Carla-nl Veteran by now

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    hi, butting in here.... I studied the topic of Systemic Mastocytosis ages ago and even got a referral to a specialist to get tested for it. I ended up there years later, test is now in progress.

    Saying that, i don't think ME is undiagnosed MCAS/SM but i believe MCAS/SM is PART of ME. I have heard several angles that make sense:
    - ME people have overly sensitive histamine receptors
    - ME people have a deviation in their mast cells (releasing to much histamine)
    - ME people have too many mast cells
    The result is, that every time the immune system is stimulated, histamine is a problem (with the accompanying inflammation etc)

    IF the treatment regime for MCAS/SM works for someone, it's safe to say they have it.
    If that treatment works only partially, it's safe to say they have parts of it but not full MCAS/SM. Part of it means no diagnosis, no treatment :-( but worse, no solution. Although MCAS/SM is idiopatic itself (!)

    I do believe that a lot of inflammatory problems and intolerances can be modulated with MCAS/SM treatment and i recommend everyone to read up on the symptoms and treatments and see if they can find a match with their symptoms.

    WHere the H2 blockers provide me with stomach bleeds, the H1 anti histamine Clemastine has GREATLY reduced my intolerances. When i did my research, i was informed that both H1 and H2 needed to be blocked if it was MCAS/SM.

    My two cents
    Carla
     
  5. Waverunner

    Waverunner Senior Member

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    Hi Carla,

    can you elaborate a bit on the severity of your food intolerances? When and how often do you take Clemastine?

    Greets

    Wave
     
  6. Carla-nl

    Carla-nl Veteran by now

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    I'll try Wave,

    At my sickest, i could only tolerate a few things. Everything made me sick. I did not even tolerate any vitamins or supplements. I reacted to everything. I weighed 8,5 stone (54 kg) and had great difficulty to maintain that weight, eventhough i ate a lot (of that i could tolerate). And i had horrible reactions to a lot of meds. I even got tested for Porphyria, i was that sick and had such horrible reactions to things.

    I mostly ate rice, veggies, pork mixed in a stew, every day, twice a day, for 3 years straight. yeah.

    At some point i started taking GLA from Borage Oil and improved greatly on that. But at some point it made me itch all over, so i stopped taking them. Then, during a severe flu, i scratched myself open at night and had to wear gloves while asleep for a week to protect myself from scratching myself. I also remembered an urticaria i had when i was 7 , after i had been given a flu-shot.

    When i started on Gc-maf in 2010, as the immune system awoke, the itch happened again, along with some desorientation, spaced out feeling. At that point i learned about systemic mastocytosis and started investigating the symptoms. It made soo much sense. Clemastine was added to the regime and i felt a lot better. I also noticed that i could eat more kinds of foods and didn't react to all kinds of products too much anymore.

    In 2010 at some point i took 4x 1 mg clemastine (Tavegyl) a day. Now i take only 1mg a day and 2 if needed. I have a pretty good regime going now which includes minute doses of gc-maf, valtrex, azitrhomicine, zopiclone, cerazette, LDN and 1 IV a week with 500ml fluid and vit.C, B. Overall i'm doing a lot better and although i usually still stick to my main diet, i can eat other things again and if i go out to dinner, i'm not in bed for 3 days straight afterwards anymore! I usually can do what ever i need to do the next day.

    Clemastine is supposed to make a normal person drowsy, for me, it doesn't at all. I can take 4 a day and not get drowsy or fatigued by it. But then, it also takes at least 2 zopiclone to knock me out at night :) There are anti-histamines that make me hyper even. I'm really happy with this one.

    Carla
     
    Waverunner likes this.
  7. nanonug

    nanonug Senior Member

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    Good to have you, even if you partially disagree with me. I need people to keep me in my toes, after all! Now, may I ask why you disagree? What is it that ME/CFS has that MCAD doesn't replicate?
     
  8. Carla-nl

    Carla-nl Veteran by now

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    Hi Nanonug, forgive me if i have not updated my knowledge about systemic mastocytosis since i first investigated it in 2010. But, the conclusion of the research i did then is that if you have a mastcell disorder, the treatment for it should take care of all the symptoms after crisis has subsided.

    I do believe that ME patients suffer from ALL (but perhaps the dermatological problems) mast cell disorder symptoms but i do not believe that ME is undiagnosed MCAS.

    I really don't think that the mast cell disorder treatment takes care of all ME symptoms. I really do not.
    That is my opinion.

    I think that especially people with MCS should look into systemic mastocytosis. And i'm happy that you are bringing the subject to patients' attention, and i respect your opinion, but your statement is a bit to bold for me.

    Carla
     
  9. nanonug

    nanonug Senior Member

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    Consider yourself forgiven! :)

    I would suspect that the vast majority of people with ME/CFS would not have systemic mastocytosis as this is a rare disease. My hypothesis is that the vast majotity of people with ME/CFS have undiagnosed mast cell activation syndrome. While systemic mastocytosis is characterized by aberrant proliferation of mast cells, mast cell activation syndrome is characterized by aberrant activation.

    I invite you to look at Table 1 on the following paper: "Polycythemia From Mast Cell Activation Syndrome: Lessons Learned." What symptoms do you feel are "missing" from this table that people with ME/CFS have?

    Were you specifically treated for systemic mastocytosis? If yes, what did the treatment consist of?

    OK, this one I don't get. By the way, there are quite a few people here in this forum with dermatological problems.

    If my statement wasn't bold, I wouldn't be making it! :)
     
  10. Carla-nl

    Carla-nl Veteran by now

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    I do appreciate your statement, but i do not agree with you and i am not going to debate with you over this. Reason being, as i said before, that i have not updated my knowledge since 2010. Other reason is that i don't have time for elaborate online discussions.

    I just wanted to give people an incentive to investigate mast cell disorders and to see if it applied to them even if partial. Because some people don't bother reading beyond a bold statement like that..... Yet i feel that people SHOULD. Some symptoms are very treatable. I remember that back in 2003 even some people reported that they felt better when they used certain medications also used for these disorders, we had no clue why that was back then.

    I do believe that ME patients suffer from ALL (but perhaps the dermatological problems) mast cell disorder symptoms but i do not believe that ME is undiagnosed MCAS.​
    You are convinced you are right. No matter what anyone says. That's why you don't get it. Please be open.
    It's a math thing; ME patients can have all these symptoms but an MCAS patient cannot have all ME symptoms. Yes, that's what i'm saying. A lot of the MCAS symptoms match with ME symptoms, but to me, there's a little more to ME.

    The treatment thing; if (any) mast cell disorder treatment would cure ME patients, someone would have figured this out ages ago and we would not be having this talk anymore today.

    Carla
     
  11. nanonug

    nanonug Senior Member

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    I was hoping that you would debate me. I think that the free exchange of ideas is very important and I do sincerely appreciate a good intellectual discussion.

    Fair enough.

    Here, I have to disagree with you. There are many smart people here on PhoenixRising and most, if not all, would readily ignore my statement if not backed by something more substantial than my opinion. In any case, I do expect and even hope to be challenged.

    Now, you are making this a bit "personal" and I don't want to go there. As far as I am concerned, my personality, yours, and everybody else's here are not open for comment.

    Please, tell me what is that "little more to ME" thing you talk about. I really want to know. It might be very obvious to you but for me it is not. So I am asking you, even implore you, to share it with me, please!

    Given that MCAS is even more recent than ME/CFS, research-wise, and that there are only a handful of doctors worldwide dealing with the condition, I honestly don't think your statement rings true. Besides, that statement could be applied to pretty much every new idea out there.
     
  12. Carla-nl

    Carla-nl Veteran by now

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    You know.... most of the long term patients got psyched at some stage by a new topic that came out there, had it investigated and then were dissapointed when they learned it didn't apply to them.

    It's very good to bring idea's to the board. And it's also a good thing to mention that even if the full blown situation did not apply to them, they could still potentially benefit from parts of that treatment. Everyone has to work out with their doctor what applies and what not.

    I can't comment into detail on your question (re: I really want to know) without digging up details and research. There's no point if i do a half ass job :). Perhaps there's someone else more up to date on things that can do this, because i think it is important as well. I used to dig into topics and do a lot of research. But at this point i have a treatment plan that works for me and i need to focus on recovering my life. The Gc-MAF saved my life, but the rebuilding part i have to do myself.

    Didn't mean to make this personal friend, really didn't. Perhaps i said that cos you're coming on strong with your arguments and trying to make this a debate. Which would be a good thing to have with me, 2 years ago :)

    There's a specialist center for mast cell disorders in a university hospital close to where i live. They're now running tests also for me, but they have already said that a lot of people only have an "x" percentage of mast cell disorder symptoms and only some markers, EDITED IN: some people had all the symptoms, but that still not accounts for all of their symptoms. It's i would say the most advanced diagnostic hospital in the entire country (i've seen em all) and they said that they still see a lot of patients for whom they are unable to find a diagnosis and in all cases where this happens, Mast Cell Disorders ARE considered and tested for. That's info from a personal consultation with one of the specialists, sorry but i don't have that in writing.

    Not that i'm a genius, but seriously, if the mast cell disorder treatments would have worked for me back in 2010, i would have made it a point to post that on this message board. I can't remember clearly what it is i took, a combo of 4 different things. I kept the H1 blocker. Eg. nalcrom did absolutely nothing for me. and H2 blocker caused stomach bleeds.

    Hope this helps. I'm off to bed now.
    Nite all,
    Carla
     
  13. ukxmrv

    ukxmrv Senior Member

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    How would this theory account for the epidemics and outbreaks of ME in the 20th C?

    (just interested as I have ME from an outbreak but a very allergic family and a lot of allergies became apparent after the acute onset of ME for me)
     
  14. nanonug

    nanonug Senior Member

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    My best answer, right now, is "I don't know." However, it is well known that viruses (among many other things) are known activators of mast cells. If this was the case, i.e., viral activation, then mast cells were just doing their jobs as expected. But, as I said, I really don't know!

    My understanding is that mast cell issues do tend to run in the family. However, to my knowledge, no one has yet been able to determine why.
     

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