This is an old thread but I found it very interesting. Particularly
@nanonug's posts, I'm keen to see what he thinks now, but he seems to have deactivated his account unfortunately.
That has also been my case for some time now.
Mast Cell Activation Syndrome is diagnosable and somewhat treatable with things such as cromolyn sodium or ketotifen.
I am now convinced that for many with ME/CFS symptoms, MCAS is the culprit.
By the way,
tryptase released by mast cells is known to induce higher paracellular permeability (leaky gut).
Interesting, and yes I've suspected this for a while.
You could maybe take the following document with you. In any case, it may not be mastocytosis, it may be simply mast cell activation syndrome:
Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options.
Pronunciation of
mastocytosis.
Next time I go to the doctor, I will take the above document with me and will highlight all the symptoms I have on table 3. Too bad if s/he doesn't like it!
If that's the case, I would be very surprised if you don't have some form of mast cell issue, then!
As far as medication goes, this is
my protocol:
- H1 blocker fexofenadine for daytime use
- H1 blocker diphenhydramine for nighttime use
- H2 blocker ranitidine 1 hour before each of the three meals
- NeuroProtek, 8 capsules a day (waiting for it to arrive)
- Nasal spray with cromolyn sodium (NasalCrom), a mast cell stabilizer
- Will ask for GastroCrom (also cromolyn sodium) once I see doctor
- Will ask for ketotifen, also a mast cell stabilizer, once I see doctor
- Other things to potentially consider are tryptase and leukotriene inhibitors
Good luck!
Which medications did or didn't you have success with? This goes to other members of the site here, I'm interested to see what works in general and for which symptoms.
So far I've tried Loratadine (H1 blocker), Famotidine (H2 blocker), and Ketotifen (H1 blocker and MC stabiliser); I reacted badly to the Loratadine and Ketotifen so had to discontinue those annoyingly. Famotidine went down fine and seems to help a small amount but nothing noticeable on my main symptoms really.
"Other things to potentially consider are tryptase and leukotriene inhibitors"
Does anyone know what are the best medications for these?
Niacin induces prostaglandin D2 release from mast cells. I don't think it's a good option for people with mast cell issues if that is indeed your case. Besides, histamine is just one of the many substances mast cells release. A better idea, in my opinion, is to stabilize the mast cells and prevent their degranulation or activation in the first place. The thread
ME/CFS is a mast cell disorder (hypothesis) has some info on what to do in this respect.
Thought this was interesting. I've seen Niacin mentioned in this section of PR a few times, particularly by
@MCASMike, and regarding its use in treatment of Long Covid, but I've always reacted badly to it. The fact it triggers Mast Cell mediator release in the form of prostaglandin D2 might be why.
Leaky gut is easy: mast cells release tryptase which increases intestinal permeability. See, for example: "
Mast Cell Tryptase Controls Paracellular Permeability of the Intestine"
Also interesting. If MCAS sufferers are dealing with tryptase release and this induces leaky gut, then it's east to see how the whole thing could result in a vicious cycle (something causes leaky gut (say SIBO), which causes bacteria and bacterial endotoxins to leak into the blood stream, which triggers MCAS and the release of tryptase, which worsens leaky gut).
So the steroids are definitely a double-edged sword, have to be very careful.