how to treat with mast cell issues

Many of us have this conundrum. It's so tough! I feel like I finally found a plan for treating through the book Toxic by Neil Nathan. This is exactly the question he answers.

You're right that calming down the reactions is the number one thing to do (at least according to my understanding) in order to begin to tolerate more forms of treatment. Recommendations for MCAS include quercetin, bromelain, stinging nettles, loratadine, famotidine, low-histamine diet and supplements, limbic system retraining (like DNRS or the Gupta program), and reduced strenuous exercise (whatever counts as strenuous for you). It's not uncommon for your doctor not to know that this needs to be addressed before other treatment can be tolerable. You are right to take this seriously!

For me, a low-histamine diet and quercetin have been very helpful. I tolerate more supplements and at higher doses, and I have not had any dizziness or brain fog. If I have a couple of drops of vinegar or anything fermented (my partner added a little miso to a sauce once) I can tell instantly. I used to drink kombucha and eat miso every day (both fermented) as well as vinegar and other high-histamine foods without an issue, so I didn't realize that they were a problem, since it developed gradually. I too had the experience of the problem increasing over time. Pollen, herxing, and stress can make MCAS flare as well.

Hang in there. There is a way through this.

I didn't know there was an MCAS specialist at Brigham and Women's! Thanks for the tip. My LLMD missed MCAS, too, for years, and I figured it out myself. He apologized. :-/ So far treatment has been fairly straightforward, but I think I will investigate the person you referenced.

Ugh, I'm sorry you are reacting to the treatment. Probably a good call to give your system a break and stabilize.

Have you looked at the Neil Nathan book? I found it very compelling. It was reassuring to read the recommendations of a doctor whose whole practice is people who are highly reactive and complex. I'm so used to being an outlier, so it was exciting to read about a possible plan for getting through all of this.

I did the online version of the 14-hour DNRS class, a little over a month ago. Like many of us, I am trying multiple things at once, but I definitely have seen improvement in that time. The DNRS is straightforward but challenging because the nervous system fights back! And you have to be committed to doing it.

Neil Nathan's book is the best I've read in terms of help for folks with multiple issues.

I hear you about spending money (and time, and hope, and effort) on dead ends. It's exhausting.

im considering it too...the problem for me, is i dont think i buy into it entirely haha... i mean its based on neuroplasticity, and we can change how our brain is wired by how we think, therefore changing how the autonomic system works....i do believe in that concept....i just think doing positive affirmations isnt going to work for me after all the crap this disease does to you...i mean staying positive and saying "stop" everytime you get negative is important, but im just not sure if it is for me...how can you research supplements, go on forums, deal with doctors and protocols, without thinking about the negatives....maybe this proves i need the program, as i have more of a realistic/scientific mind, and have trouble truly believing the positive affirmations....im doing meditation and mindfulness, which i believe works, and i think is in the program...im just hesitant to fork over $250 for 7 dvds...the profit they are getting from sick people is kinda ridiculous imo, which reminds me of a tv offer...but if it works, i guess id change my tune....

i think it may be linked to gut health and permeability. mine got better after vsl 3 900bil and kombucha homemade... more roundup on gmo corn made all corn syrup products off the table for me btw

bluelyme - Were you able to consume the kombucha despite mast cell issues? How did you manage the high histamine content in the kombucha? (Kombucha is my favorite thing in the world and I look forward to my mast cell issues resolving so I can have it again!)

Girlie - I am still doing the daily DNRS practice. I have about f.5 more months of daily practice! Honestly some days I only practice for a half-hour instead of an hour, so I certainly am not a perfect student!

dbwilco - I hear you about not being convinced about DNRS. It took me a long time to try it because it seemed, well, hokey. The presentations themselves are oddly dated and certainly in need of an update to make them more relatable for the increased breadth of folks who use the system (i.e. almost all of her examples are about multiple chemical sensitivities). The steps do involve more than just saying stop, including some gestures and specific wording that manipulates your brain in just the right way, but being able to interrupt thought patterns that perpetuate symptoms is really incredibly hard. I felt strangely depressed, irritable, and had increased nerve pain for a week or so - your nervous system does not enjoy its rewiring! You're right that it's tough to imagine doing the research and legwork it takes to address this dastardly illness if you aren't "allowed" to think about symptoms, but the program does account for that somewhat; you do a full round of the practice steps before and after appointments, reading an article, checking a forum, filling out a form, etc. And after six months, you can go back to Lyme thoughts 24/7 if you want. ;) At first, I took a step back from this forum and research and even some Lyme-based friendships, but I think I have found a balance now, six weeks in, in terms of being able to think about Lyme without lapsing into destructive thought patterns (definitely more detail about what I mean by this in the program). Additionally, you can tailor the program to yourself, with affirmations and goals and lists and reminders that help you, and leave the stuff that doesn't quite fit. I have a wall covered with reminders and tips and ideas from the training that I spend some time looking at each day, and it really has helped, since processing the information and rewording it made it feel more relevant to me. You treat this illness as limbic system impairment - a brain injury, as real as a stroke or TBI - and it will get better accordingly. In theory. I promise, I will be shouting this from the (metaphorical healingwell ) rooftops if it works. I understand what you mean about making money off of sick people, but it's cheaper than one visit with many LLMDs, and it has a one-year money-back guarantee that I plan to use if necessary! (And you can do it online now - no DVDs - unless you prefer DVDs.)

If anyone does the DNRS program and wants to chat about it and support each other, then let me know!

I have MCAS bad. The most helpful things for me are inositol and fasting, believe it or not. I also react badly to vitamin C, bone broth, fermented vegetables etc... Don't even think about kombucha.

I do see a small effect from quercetin but much less than the inositol. The key to mast cell stabalizers is to take them 20-30 minutes before ingesting something, taking them alongside has less of an effect.

I eat twice per day and every so often i skip one of the meals. That's probably the most helpful in terms of having reactions during my next meal. I just have to be careful because i have hypoglycemia from adrenal fatigue.

Another thing to pay attention to is keeping your bowels moving. If we don't keep things flowing the toxins build up and now we have more reactions. So, the occasional coffee or water enema can be of help here.

Recently im also experimenting with small amounts of cold to see if that helps

Im with you on how much badly the MCAS complicates things. I would love to know if the main driver is toxicity, infections or what

MartinK - You seem to speak/understand english very well. Can you not just get the English DNRS ?


I don't know if there is a particular thread on the DNRS - I read and posted yesterday about it...but I can't remember if it was a dedicated thread....


You can start a new thread: DNRS - Your experiences. (Or something like that)

MartinK - If you have specific questions about DNRS or Nathan's book, or just want summaries, then I would be happy to post my experiences and impressions on the forum. I have done DNRS for six weeks now and read (devoured!) Nathan's book Toxic, so while I'm not an expert, I would be happy to share, if that would be helpful for you.

Hello,

Sorry to bring this post to life again - I had another post under alcohol but maybe this will get more traffic - I was feeling well yest and made the stupid mistake of having a small glass of red wine - I had a reaction that included itchy throat and tongue and lips - this has been non stop all day yesterday and today I took 2 antihistamine then again today - I was afraid to eat for most of the day I took vit c with the antihistamine at 6 I boiled some broccoli as it seems to be the lowest histamine food I had in with some olive oil on top - 30 mins after eating it my face feels numb I’m shaky and my body feels weak - no itching though - so scared any ideas what to do ? It’s not the best time to go to go to an emergency room but I’m terrified !!! Sorry edited to add no gut symptoms or anything else at the moment just feel like my head will explode with the numbness

Thank you very much - I’ve ordered quercetin and will look into the others - are some polyphenols also triggers ? I suppose it’s just trial and error .. update I woke up feeling a lot better I still have an itchy throat and tongue and had a horrible night of hot flashes through my body - I had a bowl of rice for breakfast no reaction and then oats with hot water as I am looking for foods that are also low in sulphate.. I had a reaction with the oats after about 10 minutes a weird weak sensation washed over me and I felt hot and anxious my ears also feel blocked .. no more itching yet though .. any suggestions on foods I can ease myself in with ? Oh and I also had a piece of mango this morning but I’m not sure if it was my imagination or not but I felt my tongue get itchy almost immediately- jeez this is a new minefield for me !

tashmash said...
Thank you very much - I’ve ordered quercetin and will look into the others - are some polyphenols also triggers ? I suppose it’s just trial and error .. update I woke up feeling a lot better I still have an itchy throat and tongue and had a horrible night of hot flashes through my body - I had a bowl of rice for breakfast no reaction and then oats with hot water as I am looking for foods that are also low in sulphate.. I had a reaction with the oats after about 10 minutes a weird weak sensation washed over me and I felt hot and anxious my ears also feel blocked .. no more itching yet though .. any suggestions on foods I can ease myself in with ? Oh and I also had a piece of mango this morning but I’m not sure if it was my imagination or not but I felt my tongue get itchy almost immediately- jeez this is a new minefield for me !

Certainly anything can be for us individually. It took me years to figure out regular Vit C (asorbic acid) was a trigger for me. then I found camu camu powder and realized it was a world if difference. You are correct- this is a minefield