ME/CFS is a mast cell disorder (hypothesis)

[roxie60]

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!

I don't have the polymorphism the Afrin doc mentions (CYP450 2C19), I am -/-. Not sure that rules out MCAS, still trying to read thru the PDF file, very technical and brain is a bit mushy today.

 

[camas]

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

There's a long-term masto patient who uses this technique. He purposely eats something that he knows triggers his mast cells, feels like crap for a day or two, and then has a few good days while the mast cells slowly building up their mediators again. I have always noticed that my worst periods of illness are followed by my best, so it sort of makes sense.

 

[camas]

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.

Sometimes how you take the Zyrtec can make a difference, too. A lot of MCAS patients just take small doses (like 2.5 or 5mg) as needed throughout the day rather than taking one dose a day as recommended. This technique has worked better for me than taking one large dose at bedtime.

 

[camas]

I don't have the polymorphism the Afrin doc mentions (CYP450 2C19), I am -/-. Not sure that rules out MCAS, still trying to read thru the PDF file, very technical and brain is a bit mushy today.

It is pretty technical stuff. I found that reading through the tables at the end of the document was helpful in understanding it all. I think there is much more involved than just that one mutation.

I've been watching the videos from the Mastocytosis Society meeting last summer in which Dr. Afrin says that Dr. Molderings in Germany has found a 'blizzard' of mutations on the Kit gene among his MCAS patients. When Kit is turned on, so is mast cell activation. Will be interesting to see what comes of more studies on that. They are really still in the early stages of trying to figure out what causes MCAS and how best to treat it.

ETA: I think this is one of Dr. Molderings studies to which Dr. Afrin was referring.

 

[Sherlock]

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.

That depends on if you have MCAS, or if you have some other condition that leaves you with elevated histamine (like me) - in which case, you can try methyl folate etc (that did nothing for me) or get foods that help. After I developed the periods of burning eyes 2 yrs ago, I also developed a real craving for cheese - which I'd never had in my entire life before. I think it counteracted histamine somewhat. Now here's the kicker: when I did take methylfolate, my craving for cheese went away. So I think that maybe the cheese (and peanut butter, which I also have been eating tons of) did what the methylfolate is supposed to do, but better.

Also, I think that by breaking the vicious cycle of inflammation, histamine gets reduced as a consequence.

 

[Misfit Toy]

I am allergic to so many foods that I already avoid all of the histamine related foods and then some and still have allergies. I am allergic to too much. Cheese is the worst of them. Can't even touch it.

 

[Sherlock]

I am allergic to so many foods that I already avoid all of the histamine related foods and then some and still have allergies. I am allergic to too much. Cheese is the worst of them. Can't even touch it.

I guess you're aware that leaky gut makes a person seemingly allergic to most all foods.

 

[Misfit Toy]

Yes, I am. Is there anything I don't have? I am trying to stay positive but barely. With everything lacking an answer, I feel like I am chasing my own tail.

 

[Sherlock]

Yes, I am. Is there anything I don't have? I am trying to stay positive but barely. With everything lacking an answer, I feel like I am chasing my own tail.

Well, if you get the leaky gut repaired, then maybe you'll find that many, many other things improve. Getting poisoned every time that you eat can wreak so much havoc, aside from CFS.

 

[Misfit Toy]

Sherlock, "get the leaky gut repaired." Do I order new parts? So, how do you do that? Anyone know? There are so many wonderful ideas on here, with no clearcut answers on how. Kefir, homemade sauerkraut, probiotics...I have done them all and healing leaky gut is much bigger than getting it repaired. That's why so many people on here are talking about fecal transplants that cost $7,000 and you have to find a donor. So much of what people write on here, like it's some new extraordinary diagnosis, isn't easily repaired. Mast Cell Activation is one of those things, yet again. This illness is not a dogmatic one unfortunately. I have had leaky gut since well, before 2002. With all of the treatments, the probiotics, yeast protocols it's one that doesn't seem to go away for many unless you go to absolute radical extremes. Too radical in my book.

 

[Sherlock]

Sherlock, "get the leaky gut repaired." Do I order new parts? So, how do you do that? Anyone know? There are so many wonderful ideas on here, with no clearcut answers on how. Kefir, homemade sauerkraut, probiotics...I have done them all and healing leaky gut is much bigger than getting it repaired. That's why so many people on here are talking about fecal transplants that cost $7,000 and you have to find a donor. So much of what people write on here, like it's some new extraordinary diagnosis, isn't easily repaired. Mast Cell Activation is one of those things, yet again. This illness is not a dogmatic one unfortunately. I have had leaky gut since well, before 2002. With all of the treatments, the probiotics, yeast protocols it's one that doesn't seem to go away for many unless you go to absolute radical extremes. Too radical in my book.

For me, it was very simple: baking soda. Now I don't get stomped with the "poisoning" effects of candida, nor do I get the transitory pseudo allergies to dairy.

Mostly all of the supposed anti-candida remedies in the world are mostly useless nonsense, at least in my experience. Yet there are endless huckstering websites saying each is some miracle.

I had previously had similar benefit from MSM, but much less dramatically.

 

[camas]

I am allergic to so many foods that I already avoid all of the histamine related foods and then some and still have allergies. I am allergic to too much. Cheese is the worst of them. Can't even touch it.

Here's a website that I've found helpful http://lowhistaminechef.com/. She focuses on both low histamine and anti inflammatory foods. Some people also have good results from taking Gastrocrom before each meal since just the act of eating, no matter the food, releases histamine. Gastrocrom is used in MCAS, leaky gut syndrome, Crohn's, etc.

 

[roxie60]

For those dx with MCAS, this is a question I have asked regarding CFS/FM/ME - with MCAS do you have good and bad days or are you always incapacitated? good days can range from not bing bed ridden to being able to acomplish 4-6 living tasks a day. I just feel my symptoms are so all over the palce, no day consistent with th next. I feel like I am going mad somedays trying to figure it all out.

 

[camas]

For those dx with MCAS, this is a question I have asked regarding CFS/FM/ME - with MCAS do you have good and bad days or are you always incapacitated? good days can range from not bing bed ridden to being able to acomplish 4-6 living tasks a day. I just feel my symptoms are so all over the palce, no day consistent with th next. I feel like I am going mad somedays trying to figure it all out.

My symptoms, strength, and energy have always waxed and waned. Since I began attempting various mast cell treatments, I think I have seen some improvement in my orthostatic intolerance. At least I'm finding myself able to stand and sit up more, but it does vary from day to day.

 

[roxie60]

Slowing COMT activity even further would lead to even slower breakdown of estrogens, some drugs-herbs, and certain toxins.

Also a slower metabolism of adrenaline, which paradoxically is a mast cell activator.

When you refer to adrenaline is that another name for epinephrine and nor-epinephrine? I am COMT +/- and I have extremely low levels of epinephrine and nor-epinephrine and curious if you might be saying these are related to mast cell disorder?

 

[Sherlock]

When you refer to adrenaline is that another name for epinephrine and nor-epinephrine? I am COMT +/- and I have extremely low levels of epinephrine and nor-epinephrine and curious if you might be saying these are related to mast cell disorder?

You are correct, epinephrine is adrenalin, though I myself tend to think of adrenalin when addressing its role as a hormone, and I use the term epinephrine for its role as a neurotransmitter. The same goes for noradrenalin and norepinephrine, which are two names for the similar but related adrenalin/epinephrine.

 

[roxie60]

You are correct, epinephrine is adrenalin, though I myself tend to think of adrenalin when addressing its role as a hormone, and I use the term epinephrine for its role as a neurotransmitter. The same goes for noradrenalin and norepinephrine, which are two names for the similar but related adrenalin/epinephrine.

so if one's nor-epi and epi are very low would that equate to low nor-adr and adrenalin and thus a reason for low energy/fatigue??? are adrenalin levels testable? or am I such a noob that Drs, others already know this relationship without testing adrenalin levels, and do they matter?

 

[roxie60]

Here's a website that I've found helpful http://lowhistaminechef.com/. She focuses on both low histamine and anti inflammatory foods. Some people also have good results from taking Gastrocrom before each meal since just the act of eating, no matter the food, releases histamine. Gastrocrom is used in MCAS, leaky gut syndrome, Crohn's, etc.

I still remember going to an allergist Dr and trying to tell him I was having what I describe as a severe 'histamine' reaction 30 mins or so after eating. He point blank told me that food does not cause histamine reactions.....I was discouraged again but knew he did not have a clue cause I was living it....sad what Drs do to clients by not listening to them.

 

[Sherlock]

so if one's nor-epi and epi are very low would that equate to low nor-adr and adrenalin and thus a reason for low energy/fatigue??? are adrenalin levels testable? or am I such a noob that Drs, others already know this relationship without testing adrenalin levels, and do they matter?

Low levels can result in tiredness, but so can a hundred other causes. The single most frequent complaint to family doctors is about tiredness.

Among average people with high blood pressure who take beta-blockers, tiredness is a frequent side effect. But that's also true of calcium channel blockers, which don't affect adrenalins.

 

[Sherlock]

I still remember going to an allergist Dr and trying to tell him I was having what I describe as a severe 'histamine' reaction 30 mins or so after eating. He point blank told me that food does not cause histamine reactions.....I was discouraged again but knew he did not have a clue cause I was living it....sad what Drs do to clients by not listening to them.

The family of antacid drugs like Tagamet are really histamine blockers; but they block the H2 receptors, not the H1 receptors which we normally associate with allergy and cold symptoms.