ME/CFS is a mast cell disorder (hypothesis)

[JPV]

I think mast cell activation is a symptom but not the root cause.

 

[Gingergrrl]

I think mast cell activation is a symptom but not the root cause.

I tend to agree with this and I think (for me) that viruses and mold exposure were the root cause which ultimately led to the grand finale of mast cell disease...at least I hope it is the grand finale!

 

[JPV]

I tend to agree with this and I think (for me) that viruses and mold exposure were the root cause which ultimately led to the grand finale of mast cell disease...at least I hope it is the grand finale!

Yeah, It seems obvious to me that any number of environmental toxins such as pathogenic drug resistant/mutated bacteria, mold, fungal infections, heavy metals, pollution, pesticides, genetically modified food, chlorinated and fluoridated water and countless other toxins are the most likely culprit. Somehow, something in the body gets throw out of whack and it becomes a domino effect.

I also think this is why the authorities have no interest in investigating this illness. I'm guessing that they have a good idea what the problem is but it would harm the profit of their corporate cronies should the truth ever come to light.

Those of us now afflicted with this condition just seem to have systems that are less able to cope with such toxins than others. The environment isn't getting any cleaner so I assume that someday this condition will become a worldwide epidemic. We just have the misfortune of being the "canaries in the coal mine".

 

[ahmo]

Once on it, I completely eliminated Benadryl, Gastrocrom and a few other meds from my routine. I never had another anaphylactic reaction and never had to use any of the potential rescue meds prescribed for me. I went from tolerating 4-5 foods to now close to fifty!

We just have the misfortune of being the "canaries in the coal mine".

Exactly. Can't see how it won't get worse before things get better.

 

[justy]

I have developed MCAS in the time since this thread was started (was reading it with detached interest back then). For me it is the end result of immune dysregulation caused by M,E/Lyme/infections, not the beginning point.

Treating my MCAS symptoms, which are sort of controlled at the moment has made no difference to my M.E symptoms, although it has helped my breathing issues that had confounded Drs for some time, and my anxiety levels are much reduced these days.

My current dx are: EDS III, MCAS and M.E as a result of longstanding untreated Lyme and co infections. Far from getting better from M.E by treating the MCAS, the MCAS just makes it impossible to treat the treatable aspects of my illness.

 

[sillysocks84]

Thanks @ahmo and I just read it and had not seen that one before (unless my memory fails me which is very possible!)

It was interesting to read about Ketotefin b/c by far that has been one of the most beneficial meds I have taken (and continue to take) in this entire process. You can only get it from a compounding pharmacy in the U.S. and my MCAS doc prescribed it for me on my first visit. Once on it, I completely eliminated Benadryl, Gastrocrom and a few other meds from my routine. I never had another anaphylactic reaction and never had to use any of the potential rescue meds prescribed for me. I went from tolerating 4-5 foods to now close to fifty!

I still take Zyrtec, Quercetin, Neuro Protek & Daosin but by far the Ketotefin is the most helpful for me.

Can neuroprotek also protect against anaphylaxis?

 

[sillysocks84]

I got a reply from someone at dysautonomia international! See below

 

[sillysocks84]

"Dysautonomia International and the researchers we work with who study POTS are very aware of the mast cell links to POTS.

There are some researchers who suspect that the autonomic dysfunction itself is causing the mast cell problems in POTS patients, since the autonomic nervous system regulates the immune system, including mast cell functions. Then once the mast cell symptoms start, they only make the autonomic symptoms worse.

We had a speaker at our national conference discussing this in July, and it looks like the NIH found a gene associated with this, at least in some patients. There is a ton of research going on right now related to immune/autonomic interaction. Dysautonomia International has taken the lead on getting more POTS/MCAS specific research going. We are working on a POTS/MCAS specific study right now with researchers in California, but it still needs IRB approvals before we can announce it and begin recruiting.

When you are digging into the research on these issues, look at adrenergic receptors on mast cells and other immune cells. This might be the key to what is degranulating the mast cells in POTS patients.

Regards,"

 

[ahmo]

Can neuroprotek also protect against anaphylaxis?

I've not heard it mentioned. You'll have to contact them @ Algonot.

There are some researchers who suspect that the autonomic dysfunction itself is causing the mast cell problems in POTS patients, since the autonomic nervous system regulates the immune system, including mast cell functions. Then once the mast cell symptoms start, they only make the autonomic symptoms worse.

This resonates with the sequence of events in my life.

 

[Xhale19991]

Is MCAS different from histamine intolerance? If so, in what ways does it differ?

 

[ahmo]

@Xhale19991 Yes, different. Here's an excellent introduction to mast cell disorders. Histamine intolerance can be a *simple* reaction to foods. Mast cells release histamine among many other chemicals. If you want more on mast cell disorders, here's an excellent interview of 2 women, describing the wide variety of symptoms.

 

[student]

Hi, everybody. When I read this: - I got intrested in this. But I am still reading and learning. Brain is muchy today. Most likely for me it is not mastcells involved.. (first I have to come out of mold house).

Mastcells are IG-E triggered. They seem to collect where Hypoxy (and low oxigen) Poison and other things lay. Possibly it could be more with MTHFR(+-) Snips. I have BH4 issues. I heard about a CFS theory of: „Amygdala“ – aktivation (Gupta). He has used this term as a concept for neuro-aktivatons. (Later he created hopes to bypass all this..)

Now Mast cells are highly reaktiv – to the antigen. It plays an important part of the lokal body-defence mechanism. And all is much more in the immonologie (plus everywere in the body). And it can be measured. See @Jodie – gave UK (Europe)-Details of consultants and there testing. http://www.ei-resource.org/forum/mu...mcs-as-mast-cell-activation-disorder?start=12 Will it have the potential as one of the optional biomarkers?

What made me curious, that there was a body defence task involved. And it is set into alarm. Does it overreact in its functions? – I will continue reading.. Thanks for all these details.

My thought is: There is varieties of personal lokal fokuses. (Eaven triggers could be found in the scin.) After good start in methylation therapie. Do we all have a personal task in finding much more specifiques answers? Can we later find focus answers – and more direct (personal) therapies… in this? It will be important to strengthen and calm bowl - for all the food sensitives...

 

[redo]

Are there anyone who still focus on mast cells and CFS? I checked out mast cell activation syndrome on Wikipedia and see it's treated with antihistamines.

Rituximab did nothing for me. But the intravenous antihistamine I got at the time of the Rituximab infusion helped. And I do, inexplicably, get better by high dose antihistamines (Alimemazine). I suppose a high enough dose to cross the blood brain barrier is needed, because a small dose does nothing for me.

 

[Gingergrrl]

Rituximab did nothing for me. But the intravenous antihistamine I got at the time of the Rituximab infusion helped.

@redo, Have you been able to try IV Benadryl (or other IV antihistamines) since Ritux to see if they help you on an on-going basis? There are many Mast Cell patients who have a PICC line or port installed so they can receive IV anti-histamines on a daily basis. I was close to doing this in 2015 but my doctor and I decided against it. I got remission from MCAS from IVIG but cannot explain why this occurred.

 

[redo]

I haven't tried that many antihistamines, but would like to. You say some get IV antihistamines on a daily basis. Could you say more about that?

I think this whole mast cell disorder hypothesis could explain a great deal, since there are many more that get allergies (abnormal histamine responses) now than 50 years ago, and many more get CFS now than 50 years ago. So ... if an abnormal histamine response plays a central role in CFS, then it could explain why CFS is getting more and more prevalent.

CFS is more prevalent among women, and allergies are more prevalent among women as well. So a mast cell disorder hypothesis would fit with the fact that more women than men get CFS.

 

[Gingergrrl]

I haven't tried that many antihistamines, but would like to. You say some get IV antihistamines on a daily basis. Could you say more about that?

Most MCAS specialists have many patients who receive IV antihistamines (and other meds) on a daily basis through a PICC line or port. It would not be the first thing to try but if oral H1 and H2 blockers and mast cell stabilizers do not control anaphylaxis reactions, then IV meds are usually the next step. Some also get injections like Xolair or hard core meds like Gleevec.

 

[redo]

Thanks! Is it like an "alternative" diagnosis, so most doctors won't relate to it?

I would very much like to know who these specialists are. Since a randomly chosen antihistamine help in high doses, chances are another would have an even better effect – regardless of whether I actually have MCAS.

 

[justy]

Thanks! Is it like an "alternative" diagnosis, so most doctors won't relate to it?

I would very much like to know who these specialists are. Since a randomly chosen antihistamine help in high doses, chances are another would have an even better effect – regardless of whether I actually have MCAS.

Its not an alternative diagnosis, but there are not a lot of well qualified MCAS Drs out there. Perhaps if you say what country you are in, either @Gingergrrl or i could give you some names? I see a good Dr in the UK for MCAS, other are available. If i was in the US and could travel i would definitely feel it worthwhile to get an appointment with Dr Afrin.

His book, Never Bet Against Occam is also highly recommended to read.

 

[Gingergrrl]

@redo I concur with everything that @justy said above and it is not an alternative diagnosis, even though many doctors know absolutely nothing about it. I have an excellent MCAS specialist (who is an allergist/immunologist) but there are very few in the entire country. Are you in the US or UK (or another country)? Dr. Afrin is the world expert and I have never seen him but my main doctor did a phone consult with him in 2015 re: my case (prior to me finding my MCAS specialist).

 

[ebethc]

Thanks! Is it like an "alternative" diagnosis, so most doctors won't relate to it?

I would very much like to know who these specialists are. Since a randomly chosen antihistamine help in high doses, chances are another would have an even better effect – regardless of whether I actually have MCAS.

I've always tested negative to allergies - which is crazy b/c I feel "allergic" all the time...Learning about MCAS and getting tested (positive) was a breakthrough...

However, I can't tolerate rx anti-histamines or mast cell inhibitors so I don't any much relief plus they make me wayyyy too tired (zyrtec and xyzal are okay, but not great..).. I'd like to go to Dr Kaufman (in Mountain View, CA) and discuss IVIG, (among other treatments), but until then this is my current inflammation / allergy stack:

• Believe it or not, non-corn Vitamin C has been amazing ($16, #120 Ecological Formulas brand, which is derived from tapioca).. I take 3 grams at a time, as needed... supposedly it breaks down histamine
• high dose DHA ($13, #60, Mega DHA by Nature's way is molecularly distilled, high dose and cheap)
• Wobenzym ..($110, #800, but you can buy a bottle of #100 for $25 or just return to AMZN if it doesn't work) I can't believe it's not talked about more on this board... it's great at reducing cytokines, which is a core problem in CFS... I take ~15 pills per day... read the reviews on AMZN
• Quercetin ~$20 .. the best mast cell inhibitor i've ever taken.. not perfect, but no side effects for me personally and very effective

PROBIOTICS FOR REDUCING HISTAMINE

• B LONGUM / B INFANTIS
• L PLANTARUM
• L RHAMNOSUS

IMO, the most important thing that you do is address any gut issues... As far as I can see, the basic rationale for the paleo diet (stone-age diet), the specific carbohydrate diet (SCD), the GAPS diet and the FODMAP diet is essentially the same: these diets are all designed to stop partially digested carbohydrates reaching the colon, where they can feed bad bacteria. Lots of info on this site re gut issues, so I won't go into any specifics here..

Other sites w MCAS info for newbies:

• the low histamine chef
• selfhacked
• alison vickery

gingergrrl is one of the best sources of info on extreme mast cell problems... She sees Dr Kaufman (who's next on my list..), but there are other docs, too. I'm listing the other info so you don't have to wait to see a doctor to experiment, especially if your MCAS is moderate.. Not sure how much the above would help for serious MCAS (ie, emergency room visits w epinephrine shots, etc.)..

Good luck