ME/CFS is a mast cell disorder (hypothesis)

[justy]

Interesting... I respond strongly to any sedating drugs... how do you strengthen the blood brain barrier? I have mast cell issues - high tryptase, etc - and can't tolerate ketotifen at all... I have to rely on quercetin and vitamin c. I can't tolerate prednisone, but a lot of ppl can't so I don't know if that means anything

Have you had a bone marrow biopsy to rule out mastocytosis? This should be done if Tryptase is high.

No idea if anything can be done about it. I take a lot of vitamin c as well.

 

[brescl]

I do not necessarily disagree with your assessment. However, MCAS is testable and treatable, even if one does not know exactly what is causing the activation. In addition, once MCAS is identifified in a patient, it is actually possible to start looking for causes, even genetic ones such as c-KIT D816V mutations.

how do you test for it

 

[ahmo]

@brescl My understanding is that only bone marrow biopsy can determine MCAS. I'm certainly not going there. I treat myself symptomatically. My MC situation is relatively mild, but as w/ all the other symptoms, when it flares, not nice. I'm using royal jelly daily, and add mangosteen when I have flares. Seems to work.

 

[Gingergrrl]

how do you test for it

My understanding is that the bone marrow biopsy is the gold standard test for mastocytosis but for MCAS it is often based on clinical symptoms combined with elevated histamine and prostaglandin levels. Tryptase is another test that can be used for both but is often more indicative of mastocytosis. I have never had elevated Tryptase, even at my most severe in 2015. A good place to start is "Mast Attack" which is a blog, website, and FB group.

 

[hb8847]

Another older thread which I'm bumping because it contains a lot of useful information, and I'm also keen to hear how its contributors have gotten on with their MCAS diagnosis and/or treatment?

One of the things I am interested in is the the impact of lipopolysaccharide (LPS) on health. This is not quite how I would model it for ME or MCS, consider this a variation. If the gut becomes ulcerated for some reason (maybe even due to NSAIDs) then LPS will enter the blood stream. Some of that will wind up in the kidneys. Those with particularly susceptibility will then produce lots of kAP (my abbreviation for the kidney isoform, whereas iAP is the intestinal isoform). This neutralizes the LPS but will inevitably reach other parts of the body. In some individuals enough will do so that they disrupt the ulceration of the colon and prevent repair. This might also require genetic susceptibility.

LPS is another topic which has been mentioned a lot recently on PR, particularly in regards to the Dr Markov theory of CBIS, and the idea the LPS or bacterial endotoxins in the blood are triggering ME/CFS. If it's true that MCAS is underlying the majority of ME/CFS cases this could explain the link between conditions which cause endotoxins to leak into into the blood, such as leaky gut, SIBO, mould/mycotoxin illness, etc, and the vast array of symptoms encountered by people with ME/CFS, ranging from gastrointestinal symptoms to chronic fatigue, neurological symptoms, and so on.

If you've had most of those symptoms at one time or another, you may not have more mast cells than average, but you may have more activated mast cells. Just in case you are ever interested in being tested, here's Dr. Afrin's very readable MCAS Primer for Physician's.

As he says, "Occam's Razor has been right for 800 years now, and it's much more likely that these patients have one root problem which is biologically capable of causing all of the patient's apparent problems."

Unfortunately this link doesn't seem to work anymore, does anyone have a copy of Afrin's paper?

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.

Nor does this one sadly.

I see a good Dr in the UK for MCAS, other are available.

Do you mind sharing some names? I currently see Dr Seneviratne, but I've struggled to get my hands on a list of appropriate MCAS doctors based in the UK. I contacted Mast Cell Action UK, a charity, who gave me a list of doctors, but after having contacted the vast majority I've been told by most of them they don't treat MCAS.

 

[Learner1]

Another older thread which I'm bumping because it contains a lot of useful information, and I'm also keen to hear how its contributors have gotten on with their MCAS diagnosis and/or treatment?

My MCAS symptoms are barely there and I don't take any meds except when I encounter and allergen (like grass pollen). I still take quercetin.

Reducing iron overload, treating mold mycotoxins, taking ketotifen, ranitidine, quercetin and cromolyn sodium all helped, but IVIG and Rituximab made a huge difference.

 

[hb8847]

Thanks @Learner1. Out of interest, how long was the treatment from start to finish? As in, from the first MCAS medication you were prescribed to the time you saw some benefits from IVIG and Rituximab?

I myself have just tried Ketotifen but unfortunately am reacting badly to it. And my doctor seems incredibly slow at moving onto the next one. I'm considering just buying some of the most commonly mentioned MCAS meds from online pharmacies abroad and giving them a go myself (eg cromolyn sodium etc).

 

[hb8847]

Yeah, we need a lot more research in this area. Thank goodness for the work of Dr. Theo. Here's what Dr. Afrin says in his physician's primer.

"We're probably at least a decade away from having the knowledge and testing we need to have to be able to predict what therapy will be effective in any given patient, so 'til then, it's all trial and error, typically starting with the cheap stuff and working your way up in cost as necessary. I've been at this since figuring out in 2008 that that polycythemia patient was actually MCAS, have acquired more than 300 patients with this (only a few with polycythemia, by the way, though they intriguingly seem to consistently respond pretty well to imatinib), and fewer than 10% of 'em haven't gotten significantly better yet, and for none of those 10% have I yet exhausted all of the therapeutic options."

Well this sounds fairly positive. Although I'm struggling to see how this is the case given my present situation - I've tried 3 MCAS meds so far, reacted badly to 2 of them (Ketotifen and Loratatine) and saw little discernible benefit from the third (Famotidine). Based on this from Afrin I assume at some point I'll start to see some benefit from something? Although I guess I could just be in that 10%.... Did most people here experience benefits at some point from MCAS meds?

 

[Jess K]

I have to take H1 blockers and H2 blockers to notice a benefit - if I just take one or the other, I don't really notice much.