mcas

That has never come up in all my time dealing with Lyme. How does it impact you? And did you ever get an idea about autoimmune or other possibilities?

Hi, dcd. I'm sure you expected to hear from me on this since I bring up MCAS all the time. ;)

I had MCAS symptoms for years, but I didn't make the connection until I read Neil Nathan's Toxic and identified with the MCAS patients he described who seemed to react poorly to every single thing they ingested. I decided to start taking curcumin and quercetin, and switch to a low-histamine diet, to see if it made a difference. (I was eating miso and drinking kombucha every day, both very high in histamine, in addition to other delightful fermented things.) Within one day of a low-histamine diet, my brain fog went away completely. The only times it has come back in the past 18 months has been when I have been accidentally "histamined," for example when my partner used an overly-ripe banana in my smoothie.

My LLMD took this direct correlation with fermented foods as confirmation that I have MCAS. Testing (tryptase, etc.) is not always reliable unless a person is in the middle of a flare. I occasionally have very high eosinophil counts, which can correlate with MCAS. Plus he knew I had unreasonable and atypical amounts of trouble with very basic antimicrobial treatment!

People's triggers vary a lot. I've noticed that I can eat tomatoes and citrus with no effect, but vinegar and fermented things send me into a flare right away (brain fog always, sleepiness sometimes, feeling like I'm going to have diarrhea sometimes, actual diarrhea occasionally). I can handle a brief hot shower most of the time, but if I'm stressed or have been exercising, then a hot bath or shower will leave me with a red skin rash for a couple of hours and feeling sleepy. I get slight flares from the inflammation in my system before and during menstruation, so other reactions are more common during that time as well. Anything else that causes inflammation, like stress or a virus, also gives me flares.

One hallmark of MCAS for people with Lyme is that we often can't tolerate antimicrobial treatment very well because the endotoxins of a die-off don't just give us "flu-like symptoms" for a couple of days, but instead leave us in an intractable MCAS flare for the duration of the antimicrobial treatment. I will herx continuously on tiny doses of antimicrobials, which makes them very hard to tolerate. The reaction I get from antimicrobial treatment is headache, brain fog, loss of appetite, anxiety, dizziness, disequilibrium, peripheral neuropathy, paresthesias, digestive discomfort, fatigue, sore throat, weakness, and lack of coordination. Sometimes I feel this way from other supplements I try, even at minimal doses, right away, regardless of whether they have antimicrobial properties. The only way I can (sort of) distinguish between a herx/MCAS reaction and an MCAS-only reaction is the timing - MCAS allegedly would occur right away, whereas a herx/MCAS reaction would take a day or more to build up.

I have not had hives except from medication allergies. My skin symptoms only appear from heat, and look like a slightly raised sunburn. Though many people have hives and itching, those have not been symptoms for me. I'm also grateful not to have respiratory symptoms or anaphylaxis.

I read recently (in multiple mainstream medical sources) that the overwhelming majority of people with IBS have abnormally high activation of mast cells in their digestive tracts. Mast cell stabilizers are used to treat IBS and even put IBD into remission, so that makes sense. I found it interesting because it seems that mast cells are going to get more attention in the coming years.

Nerve pain can come from mast cell antics or be exacerbated by it, as you mentioned. I can see how you'd want to look into MCAS, in case it's involved for you. Treatment can be simple, and I'm sure any degree of symptom relief would be worth it for you. I hear other MCAS patients say that they have no reaction to some treatments but do respond to others, so I usually encourage people to try multiple things. I have noticed an uptick in symptoms when I try some mast cell stabilizers, but the uptick turns into a decrease after about a week. Pepsid and oral cromolyn sodium both give me nagging esophageal pain, for example.

I always appreciate puns.

I have had severe, sudden diarrhea after eating before. Looking back, after learning about MCAS, I was able to trace it to a very high-histamine meal immediately beforehand. The last one was decaf coffee (not the mold-free kind), pickled cauliflower, and a large chocolate chip cookie for my birthday. My body decided it was very offended by all of that. I also wonder if SIBO can play a role - like our intestines are already irritated and low-grade reactive because of the SIBO, and then we offended it with an MCAS trigger and they flip out? Not sure.

Nerve pain for me has been constant for periods of time, but went away almost entirely when I started treating MCAS. That said, addressing MCAS for me included curcumin and DNRS, which can have their own effects on nerve pain, regardless of MCAS status, so I'm not sure whether to lump my nerve pain in with MCAS or not.

MCAS can vary in severity. When someone is in a severe MCAS flare, then they react to everything. Sometimes even water, or a bedsheet brushing against their skin! But it's never been that bad for me, knock on wood.

Let's say that for my case of MCAS, I can handle 20 "histamine points" per day. If I assign each trigger a point value (so for me kombucha would be a 20 and a shower would be a 2) then I can predict how much I can handle. I never can handle a kombucha, and I usually can handle a shower. But on a day when I exercise (6) and am stressed out (6) and there's pollen in the air (3) and I eat a tomato salad with vinaigrette (5), a shower (2) would send me over my 20-point limit, and I'd react. Does that make sense? I just mean that MCAS sensitivity can be cumulative.

I think it is something to explore for you. I'd start fairly simply, with a strict low-histamine diet for a week (lots of lists online) and taking quercetin. It seems unlikely to be a revolution for your nerve pain, unfortunately, but it could be part of the puzzle for the rest of it.