Like to connect with others who have severe MCAS

I'm coming to the conclusion that MCAS is an even bigger part of the puzzle than i prrviously thought. One moderate histamine food and my derealization/depersonalization goes insane, exercise intolerance skyrockets and my mood plummets. Nothing will make these go away but really high dose inositol and quercetin will take a little edge off. I'm currently on Xyzal, Inositol HP-6, Inositol, Loratadine, Singulair & chromalyn sodium but they don't do much.
Is there any one particular infection tied more so to MCAS than any others? Or is it more toxicity based? Dr M treated MCAS pretty heavily and at the time i was only diagnosed with bartonella so I'm not sure if that one has particular affinity for mast cells or not.
The dissociation is so incredibly bad, i feel like im living in a 2D pastel world. I really want to find something that may put a little dent in this.

Thx for any advice-

Assuming you already are on a low-histamine diet, it sounds like you are doing all of the things people do for MCAS! Except maybe Pepcid, stinging nettles, homeopathy (histaminum), and DAO? In the book Toxic, Neil Nathan recommends most of the things you mention but also limbic system retraining programs (like DNRS) to rewire the part of your brain that's overreacting. I have had some improvement with DNRS, despite feeling skeptical about it at first. At the moment, though, tree pollen season has caused me an increase in MCAS symptoms again....

I don't know which infections might particularly predispose someone to MCAS, but I know other conditions do, like Ehlers-Danlos. I have assumed that for me MCAS is a result of the general dysfunction and overload my body experiences because of a variety of infections, but I don't have any research to back that up. I can say that I did not have it when I first became very ill with Lyme and co-infections, and that MCAS worsened for me over time, along with worse herxes and more adverse reactions to treatments.

Your description also makes me wonder if something else in your environment is keeping you very sensitized, like mold exposure, toxic cleaning products or body products, or an allergy to something in your home (pet, down comforter, etc.).

Hope you get to the bottom of this! Dissociation is maddening.

Back in the moldy house, or did they move?

I have not been diagnosed with MCAS, but I suspect histamine issues. So far, they come and go and are not constant. At times, I have itching around my nose when I eat. Other times, I have had bouts of feeling strange in the evenings after supper, magnesium citrate, and evening herbs. I usually take the mag after supper and the herbs soon after, so it’s hard to say exactly which triggers it, but it usually seems to be food or the magnesium.

Anyway, when the evening episodes have happened, I have experienced various things - sudden hot flashes, shortness of breath, suddenly have to have a bowel movement (normally only go in the mornings). Those are the most recent episodes. One night last week, I started feeling strange after supper, then got hot, dizzy, short of breath, nausea, and urgent BM. Two days later, I had sudden bathroom emergencies right after lunch 2 days in a row and saw some small “ropes” come out.

In the past, I had bouts of slight dizziness, feeling like I was going to pass out, muscle fatigue, joint and muscle pain. This happened in the evening as well for about two weeks until I had a massive expulsion of some kind of pathogens in my gut - Candida, ropeworm, something??.

I don’t really know what the main pathogen is in my gut that seems to drive a lot of my symptoms. My doc thinks parasites but I have only used herbals so far and have a hard time with the die off symptoms even from that, so not sure what Rx anti-helminthics would do to me. I know I have ropeworm, but nobody really knows what that actually is. Maybe some Candida, though antibody tests have consistently been negative. Could be bad bacteria (SIBO) or even mold/fungal. I am not sure what I believe about mold colonizing in the GI tract. My doctors have not intimated that. I don’t know how that is accurately diagnosed.

All I know is something in my gut seems to trigger “allergic” or histamine type symptoms, especially when “it” is apparently being killed or in the process of being expelled from the GI tract.

The ONE THING that seems to have helped me the most (at least initially) is Biopure Zeobind zeolite powder. I finally decided to try it and have been taking it about a month. The first week or two, I took the recommended dose on the bottle one time per day. I was amazed at how stable and level I felt after I started it.

After about two weeks, I either started herxing from moving too much toxins, or I was having bad flares due to new mold exposure. I backed off and ended up taking it every other day for about a week and then switched to less than a full dose daily.

I have not had the same experience that I initially had, but I am still convinced that the Zeobind is binding the right stuff in enough quantities to have a measurable effect, whereas nothing else has so far. According to Allison Vickery (don’t know this person’s reputation for accuracy) one of the things it will bind to is histamine. That’s what she says here: https://alisonvickery.com.au/zeolite-binds-histamines/

I saw you are on Ancestral Supplements. 99% of those reviews are scam reviews, see here:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=2ahUKEwi4_J3fjr3iAhVGCTQIHcC0BaMQFjABegQIARAB&url=https%3A%2F%2Freviewmeta.com%2Fbrand%2Fancestral-supplements&usg=AOvVaw0dzT815FccStexuJVqtu92

Also, New Zealand cows are not organic and actually are pretty diseased from what I've heard. So it makes sense you do not feel better using them.

I have MCAS too and the only thing I can do is pay attention to how I react to foods and supplements and avoid them if I have a poor reaction. This also applies to herbs that treat Lyme, I can react too strongly. You just have to be very vigilant. It can improve with avoidance as the storm dies down so to speak.

I started reacting (mostly mentally) to all my medications so I knew I had to quit. I often wonder if my MCAS was more from diseases or long-term abx use destroying my gut. The low-histamine diet helped with reflux and itching, but I was still reacting to more and more foods, and like I said, becoming too sensitive to medication:

Chinese medicine and acupuncture has been incredibly helpful to me. A lot of itching and reaction at first then with the right combo of herbs and needles, things calmed down. I will have flare ups for whatever reason but they can always calm them down with tailored herbs and acupuncture. I’ve been able to be a lot more lenient with the diet. It’s helped a ton.

BabsBunny said...
I started reacting (mostly mentally) to all my medications so I knew I had to quit. I often wonder if my MCAS was more from diseases or long-term abx use destroying my gut. The low-histamine diet helped with reflux and itching, but I was still reacting to more and more foods, and like I said, becoming too sensitive to medication:

Chinese medicine and acupuncture has been incredibly helpful to me. A lot of itching and reaction at first then with the right combo of herbs and needles, things calmed down. I will have flare ups for whatever reason but they can always calm them down with tailored herbs and acupuncture. I’ve been able to be a lot more lenient with the diet. It’s helped a ton.

99% of all my reactions to foods, medications and environment are mental/psychological as well. I just recently started babesia treatment because a lot of ppl here and most of my doctors kept thinking i had it. The psych symptoms are by far the strongest and worst. Is that the same with you?

Neil Nathan notes on MCAS at recent Iseai conference:

Neil Nathan, MD spoke on "Elephant in the Room: Mast Cell Activation" and shared:

Concussion or whiplash can lead to cervical trauma Fibromyalgia. Causes a persistent inflammation of the spinal cord which is treatable with FSM. Can take a whole layer of inflammation out of a patient. Single treatment can reduce pain and symptoms by 50-80%.
At least 50% of his patients have Mast Cell Activation Syndrome.
Mast cells are a bridge between the immune and nervous system. Direct neurological connection to the vagus nerve.
Mast cells have many contents beyond histamine including serotonin, serine proteases, and others.
VEGF and TGFb1 are significantly made by mast cells.
The role of mast cells is to coordinate the immune response to infections and toxins.
In genetically susceptible individuals with exposure to specific toxins, mast cells may become activated.
MCAS symptoms often appear within minutes after eating; can even be triggered by water.
Has had about 250 patients that did DNRS with "fabulous success".
Localized edema can be MCAS.
Difficult to get MCAS tests done properly; need a cold centrifuge and need to catch a snapshot when the MCAS is fired up. Without a refrigerated centrifuge, 5% of histamine is all that will be captured.
Can make a MCAS diagnosis without positive testing; treat it.
Treatments are largely benign; not treating leaves patients to the winds of fate.
It is not a lifelong issue to have MCAS.
Trigger is almost always mold, often Bartonella, sometimes Lyme.
Many of his MCAS patients are cured.
Quercetin 250-500mg 30 minutes before each meal and at bedtime can be very helpful.
Loratadine as an H1 blocker and Famotidine as an H2 blocker may be used; can use Zantac.
50% benefit from a low-histamine diet.
NeuroProtek LP, ADO, AllQlear (tryptase inhibitor), Perimine, PEA/Mirica may be used.
Fexofenadine, Ranitidine, Ketotifen, Cromolyn may be used.
The more you do, the quieter the mast cells, the better the course.
Claritin or Allegra are patient favorites.
One of his favorites is Ketotifen; H1 blocker, leukotriene inhibitor, and mast cell stabilizer.
"If some is good, more is not necessarily better."
Working on the limbic system also works on MCAS.
Back up and treat the vagus nerve and limbic system first. Then can treat mold, Lyme, and other issues more successfully.

Here’s the full link:
http://www.betterhealthguy.com/iseai2019?fbclid=iwar3lyi-i37v20cbyqegrlzko9pza0dxeeicecxmdrxbxeo6e9l7txmr11qo

Post Edited (k07) : 5/28/2019 12:11:50 PM (GMT-6)

I thought it was frequency specific microcurrent. Not positive though.

I looked up MCAS today and realized I have a ton of symptoms. It has been really bad the past week and is getting scary. I woke up with a headache, congestion and belching again around the time my bowels started moving. I had a lot of headaches 2-3 weeks ago. I didn’t realize until today that the headaches could be from MCAS.

The scary part is the allergic feelings especially after eating or taking supplements - funny feelings in lips or mouth or throat, itchy face or hands, hot or burning feelings in palms and bottom of feet, abdominal pain. Also worse joint and muscle pain, neck stiffness, coughing, whole body tension like I can’t relax.

I took 500 mg of quercetin before supper and will take another dose before bed. Not sure it helped much.

I skipped the Zeobind yesterday and today. I skipped because I could tell I was getting progressively worse and thought maybe I was detoxing too much. Later today, I wondered if the headache this morning was from not taking the Zeobind yesterday. First headache I have had in almost 2 weeks.

I’ve been feeling scared all day and don’t know why this is happening.

WalkingbyFaith said...
I looked up MCAS today and realized I have a ton of symptoms. It has been really bad the past week and is getting scary. I woke up with a headache, congestion and belching again around the time my bowels started moving. I had a lot of headaches 2-3 weeks ago. I didn’t realize until today that the headaches could be from MCAS.

The scary part is the allergic feelings especially after eating or taking supplements - funny feelings in lips or mouth or throat, itchy face or hands, hot or burning feelings in palms and bottom of feet, abdominal pain. Also worse joint and muscle pain, neck stiffness, coughing, whole body tension like I can’t relax.

I took 500 mg of quercetin before supper and will take another dose before bed. Not sure it helped much.

I skipped the Zeobind yesterday and today. I skipped because I could tell I was getting progressively worse and thought maybe I was detoxing too much. Later today, I wondered if the headache this morning was from not taking the Zeobind yesterday. First headache I have had in almost 2 weeks.

I’ve been feeling scared all day and don’t know why this is happening.

WBF - sorry you’re having a rough time.
I was taking the Quercetin two or three times daily and I think it was helping some - but then I got some bruising and stopped taking it.

Seems I can't win for losing.

Today had my safety labs done and my wbc count is low.
What next?!?!

WalkingbyFaith said...
Aerose,

What affect has the babesia treatment had on your symptoms?

I had a brief period of a few days where the DP thinned slightly. Like, 5% maybe which is more than it has in 7 years. That was a couple weeks after starting Mepron so i might be able to associate it to that but im not sure. Around that time i also got stricter on my histamine intake and restarted Singulair at night. Can't say the babesia trestment has done much yet but im steering more toward mast cells as a major cause of my dissociation and intolernce to energy expenditure

Walking-

Nope, never had a doctor recommend cholestyramine since my c4a always comes back normal. Every doc for the past several years has gone right to biotoxin disease and some of my tests are off but once c4a is normal, they drop it.

I am sensitive to mold though, and do have bartonella.

I was given zeolite years ago but don't remember any benefit from it. On a rare occasion I'll have some brief improvement from bentonite clay or MCP but it's fleeting.

I was taking Lion's Mane and Chinese Skullcap for a while for brain retraining but i react badly to them- mast cells.

According to Jill Carnahan, mold is the number one trigger for MCAS.
https://www.google.com/amp/s/www.jillcarnahan.com/2018/03/12/mold-is-a-major-trigger-of-mast-activation-cell-syndrome/amp/

My latest and worst bout of MCAS type symptoms started after some bad mold exposures a few weeks ago.