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ME/CFS is a mast cell disorder (hypothesis)

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Jul 12, 2012.

  1. camas

    camas Senior Member

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    I can see why you'd be less than thrilled with having to approach Dr. Matito again, but something is clearly up with your tests. I sure hope someone can sort it out for you. Sending positive thoughts your way!
    MNC likes this.
  2. nanonug

    nanonug Senior Member

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    MNC, I just recalled exchanging a couple of emails with a Spanish researcher regarding histamine associated polymorphisms. Here is the email I got from her (I am sending her email address privately to you):

    Dear Carlos,
    Please find attached the requested reprint. As you can see in the article, there exist several genes involved in histamine homeostasis and function. Perhaps the genes and the SNPs that were tested corresponding to the HRH4 receptor are not among the most informative. I would suggest testing the genes related to histamine
    synthesis and degradation. In collaboration with the University of Extremadura, we offer genetic testing and medical genetics advice thorough the company AMGenomics. You can contact the company in the email address AMG.informacion@gmail.com for further information on these services if you are interested. Best wishes, Elena García-Martín, MD
    katim and MNC like this.
  3. MNC

    MNC Senior Member

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  4. MNC

    MNC Senior Member

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    So, I'm back from this veteran allergy doctor who is also specialized in labor health. He knew absolutely nothing about MCAS, very little about Mastocytosis and didn't even know what my elevated tests mean.

    The only interesting thing he said is that he was involved in the 80's in the investigation of the Bophal Disaster in India (http://en.wikipedia.org/wiki/Bhopal_disaster) and he said that among the survivors, most presented chronic symptoms of CFS, Fibromyalgia and Chemical Sensitivity just like some of her patients today, mostly women he said.

    So, in his opinion, these diseases are related to toxic exposure.

    I called Dr.Escribano but couldn't speak today. I must try again tomorrow or in the next days.

    Cheers to all.
    camas likes this.
  5. JT1024

    JT1024 Senior Member

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    Just reading through this thread after doing some research on C4a, an anaphylatoxin derived from Complement C4. After having positive tests for Lyme and co-infections, my doctor did tests for CD57 and C4a. My C4a result is extremely high (35613) while the reference range is 0 - 2830 ng/ml.

    Turns out , "C4a anaphylatoxin is a mediator of local inflammatory process. It induces the contraction of smooth muscle, increases vascular permeability and causes histamine release from mast cells and basophilic leukocytes".

    My doctor want's me to see a Lyme specialist. My previous diagnoses have been FM/CFS. Now it seems Lyme and co-infections are added to the list.

    Funny how my rheumatologist had prescribed hydroxy-zine, an antihistamine to help with sleep. I noticed immediately how it helped my extremely painful muscles relax.

    Way too much information for me to put it all together.

    Great thread and great to see Nano back!
    camas likes this.
  6. JT1024

    JT1024 Senior Member

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    Interesting that Hydroxyzine is mentioned as a treatment for MCAD here: http://geneticgenie.org/blog/2013/0...-chronic-illness-and-its-role-in-methylation/

    Treating Mast Cell Activation

    While a lot of Dr. Theoharide’s research focuses on natural substances such as Luteolin for inhibiting mast-cell activation, and while he is the medical director of Algonot, it’s important to note that he receives no compensation from this company. I think it is important to note this fact because often when one has financial ties to companies or products, their research often becomes skewed or misleading. Algonot develops a supplement for MCAD called Neuroprotek that contains the bioflavonoids Luteolin, Quercetin, and Rutin.

    There are pharmaceuticals for MCAD. Hydroxyzine preparations can be quite powerful, but usually require a prescription. Anecdotally, the combination of Zantac and Zyrtec(OTC at your local pharmacy) seems to work pretty well. Zyrtec is an H1 receptor inverse agonist and Zantac is a H2-receptor antagonist. However, even though these are over the counter, do not begin these medications without consulting with a qualified healthcare practitioner first.

    I also take Zyrtec when my allergies act up...
    nanonug likes this.
  7. triffid113

    triffid113 Day of the Square Peg

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    Hi, there are a number of studies that show that HYPOthyroid lowers GFR. I experience this every winter now post age 50 due to cold, dry air setting off my allergies. That uses up zinc to repair the mucous membranes, which my thyroid needs, and it drives me hypo. I believe to the extent that I can arrange my environment to breath humid air it will be less a problem. I have that sort of allergy that is affected by small changes of humidity -- walking in/out of a building in winter for example. (vasomotor rhinitis).

    I have recently found a study which said the piconolinate forms of zinc, copper, and chromium are significantly more absorbable than other forms. So I am switching to picolinate forms to see if that helps. Can't find the study that quickly...I can't remember what I filed it under!
    Sherlock likes this.
  8. triffid113

    triffid113 Day of the Square Peg

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    Sherlock likes this.
  9. Rand56

    Rand56 Senior Member

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    Atleast with me personally, I agree with zinc picolinate being the more absorbable form. Had been taking zinc citrate for some time until recently switching over to the picolinate version. Zinc is known to be an aromatase inhibitor, and not to my surprise from recent blood tests, my estradiol level is on the high side. Most noticeable symptom after I started on the picolinate version is that I started wizzing like a race horse, which was not evident with comparable amounts of the citrate version. An aromatase inhibitor can help you get rid of excess fluids. So, atleast in me, must be something to the picolinate being better absorbed.

    Rand
  10. wastwater

    wastwater Senior Member

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    I have eosinophilia comes and goes and always thought it was a clue but not sure what.Im interested to see its connected to cowdry bodies and lewy bodies I think what ever that means
  11. camas

    camas Senior Member

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    Hi wastwater,

    In the article I like to in my signature, Dr. Afrin mentions eosinophilia:

    Similarly patterned basophilia is seen in even fewer patients but, as
    with a fairly persistent relative or absolute monocytosis or eosinophilia which cannot be
    attributed to any other evident disease, can be a clue to the presence of MCAS [Mast Cell Activation Syndrome].

    I have no idea what any of this means, but thought I'd share. :)
  12. roxie60

    roxie60 Senior Member

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    Nanonug, I have tried 20 x's to download and print that Mast Cell Activation pdf file without success. If you or soeone already has it could you attach it for others to download. It just never completely load from the nih site. I wanted to take it to my Dr tomorrow just for her reading pleasure. I also wanted a copy to read. TIA

  13. camas

    camas Senior Member

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    roxie60,

    If you PM me with your e-mail address I'd be happy to send it to you.
  14. camas

    camas Senior Member

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    Hi Spitfire,

    Dr. Afrin's paper which I link to in my signature is one of the best resources I've found. If you'd like a printable copy of this PDF for your CFS doc, just drop me a PM with your e-mail address and I'll send it along.
    The Spitfire likes this.
  15. Misfit Toy

    Misfit Toy Senior Member

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    Camas, thank you so much. Will bring this into my doctor. It makes so much sense....like a big GREEN light! I don't feel that way about a lot, but this resonates.
    camas likes this.
  16. camas

    camas Senior Member

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    You're welcome, Spitfire. I felt the same way when I watched those 2010 TMS videos and saw my crazy 'spots' that no one has ever been able to diagnose (or, frankly, just dismissed). My first reaction was 'huh.' My second was 'wow'! :)
    The Spitfire likes this.
  17. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Don't forget about quercetin, which is not a blocker but instead helps prevent the release of histamine (and prostaglandins). A dramatic example of that is that quercetin fairly well abolishes the flush from niacin.
    The Spitfire likes this.
  18. Misfit Toy

    Misfit Toy Senior Member

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    Sherlock, I used to go to a physician who prescribed supplements. One of the first things he did was get me off of histamine foods, which I really had no problem with at the time. Then, he put me on so many supplements including niacin. I would have this niacin flush. Whatever he did made my endometriosis "stop." I had to stop them because I had a surgery where I developed a blood clot and he didn't want me on them.

    I always think of the niacin and wonder, did that help histamine or make it worse. I would become exhausted from the flush and itch. My mouth would become dry. I really don't know what it was doing.
  19. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I never had a problem with histamine foods, either. My guess is that they only affect people with bad gut problems.

    I've read lots of accounts out in the world where people complain about the niacin flushing their faces and necks. I always flushed down to my knees. After getting sick, it's down to my ankles. Still, I kind of like the flush.

    Getting the flush might use up histamine and provide some window until it gets built back up again in the mast cells.

    Docs have been prescribing niacin for a long time for CVD prevention (though that might change). They alnost always suggest aspirin to reduce the flush, but aspirin doesn't work anywhere near as well as quercetin. (There's a Dr Theoharides who did a study on this,, but docs just aren't aware of it yet.)

    I believe that my high histamie levels come from the MTHFR 677 SNP, which makes me not able to break down histamine very well. I think this also makes it difficut to get back to sleep when I wake up in the night, since histamine is also a neurotransmitter.

    If you consider yourself to be an intense personality type, that could be related to histamine, too.
  20. Misfit Toy

    Misfit Toy Senior Member

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    After looking over this, there really isn't a treatment that I am not doing. I take Zyrtec everyday. On top of that, I had to take Benadryl this morning. I was hoping I would find an answer to stop this mess in a much bigger way since antihistamine's are a superficial bandaid.

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