Is it all just MCAS? Losing hope.

Hi everyone, I'm new to this forum. I heard that there were a lot of folks from Canada on here Hope it's okay to share my story - I do have a general question for the group down below in the final paragraphs if you want to skip over the history!

I've been sick since I was about 8 years old. I have a weak-positive lyme test from Armin labs, and while it's certainly plausible after spending my summers in the forest on gulf islands, my main suspicion has been possible bartonella (in addition to lyme or maybe even on its own). When I first got sick I'm certain I had something similar to PANS/PANDAS - high anxiety, depression, OCD pretty suddenly that was resistant to antidepressants. I think this was after shortly after introducing two new cats too (who never scratched but of course kittens have little sharp claws). Anyway, I've had tons of other animal/vector exposure, joint pain, sore throats all the time, foot pain in the mornings, sudden weight gain, and I recall getting stretch marks in the absence of weight gain a little later on too. I did have a period of a few years where my symptoms abated after I quit eating gluten and a few other things, so that might have helped my body get back to homeostasis. The foot pain and stretch marks disappeared during that time, which is unusual for normal stretch marks. They didn't fade to white, there is literally no trace.

Now however, I've been disabled with pain and sickness for the past two years, and had symptoms creeping back in for about 4. I do think I might have lived in a moldy place because combined with a round of antibiotics for another issue, I suddenly got what I now know to be terrible MCAS symptoms. I've had flushing, GI distress, and skin issues in the past, but I actually think I went in to anaphylaxis a couple times. Allergist said nothing is wrong. Moved away, got marginally better (no more scary symptoms) and then a couple years later everything came crashing down with the left side of my body going suddenly weak/numb/tingly, red eyes, double vision, joints clicking/pain, swollen tongue, neck pain, brain fog, muscle twitches, just generally feeling like I'm possessed. I thought I must have had a parasite before I knew anything about lyme, mcas, etc. I have an increased ANA, but no ENA's and not enough for any diagnosis other than UCTD which I think is code for "we don't know."

Anyway, it's a lot more complicated but those are the highlights. So after my doctor finally ruled out anything she felt she could, she told me to go to an integrative doc and/or a naturopath (I'm very lucky to have had a doctor willing to admit that and not tell me I'm crazy). I spend hours researching and reading anything I can to try and understand, as I'm sure most of you do too. Right now, what I have come to realize is really, how MCAS could be responsible for most symptoms. We know bartonella has a particular connection with MCAS, and looking at symptom lists...they're all the same, really. Except maybe the foot pain. Which I have now started to get again, though it is very mild.

So, I guess my main reason for posting is that I have been worrying that maybe my main issue is really MCAS and has been all along and I don't have a pathogen - but I also understand MCAS to be a secondary problem, usually from the immune system going out of whack because of an underlying issue. Maybe that's the point - many of us are getting MCAS symptoms because it's our host response to the pathogens instead of the actual pathogen symptoms?

I'm terrified that I'm going to feel like garbage for the rest of my life, and am losing my will to live if I'm being honest. I've been battling for people to see the sickness I was experiencing for years just to be told I'm crazy. Maybe someone can tell me that there is hope to calming down the MCAS? I was never allergic to anything as a child, very healthy before age 7/8, no EDS either, so I really don't think I'm one of those people who just has it as the primary issue without underlying provocation. Whilst I think I might certainly be prone to having my mast cells overreact (like probably anyone who has rosacea as a family trait is) I am keeping myself hopeful that there is probably something driving the inflammation and madness of the mast cells. But I am kind of losing faith, hence I suppose why I'm looking for community support.

Anyway that was a lot. Thanks to anyone who reads

PS I'm treating with Dr. D in BC...if anyone knows who I'm talking about and is also a patient.

Welcome to the forum!

I’m a fellow BC’er.
Is your Dr in Vancouver or Victoria area?


I’m trying to think who Dr D is?

I first treated with a LLND in Richmond - Dr EC
He was the most knowledgeable and experienced LL dr we had at the time (2014)
I am now a patient at the Jemsek clinic.

I was using Quercetin for suspected MCAS and it seemed to work well - but then I got some blue “bruises “ on several toes - but I hadn’t banged them - so I stopped taking it.

morningstars said...
Thanks for the welcome

My doctor is in the Vancouver area, but does telemedicine (I'm on the island). She's not very well known I think, but she used to be a colleague of my GP before she went into functional/integrative medicine (probably why my GP knew about her and referred me). From what I can see she is knowledgeable about lyme, mold/biotoxin illness, chronic mycotoxin illness, and a number of other things. She's low profile - but almost a little too low profile in my opinion lol since it's very hard to get in touch. But a lovely person. I'm also working with a naturopath in Victoria that is lyme literate, but I'm feeling unsure that anyone is quite literate enough about bartonella and mcas. We'll see, I've only seen Dr. D once so far. Would love to consult with Dr. M in the states but the idea of doing care across the border intimidates me so much.

Do you have to travel to the Jemesk clinic? I hadn't heard of that so thanks for sharing, I'll look into them. Want to give this doctor a good try though since she is integrative and can order me a lot of free bloodwork within the provincial guidelines so that's a real bonus. Of course the provincial tests for lyme are useless but nice to be able to monitor other things that way.

Do you still think you have MCAS and treat it in other ways?

I’m on the Island too... half way up.
I saw a ND in Victoria a couple of times. Her initials are MB.
But I was seeking abx treatment and she wasn’t knowledgeable/experienced in it.

The most experienced LLND is Dr EC in Richmond. He does phone appts (after an initial in person consult)
After a couple years with him, I decided to move on as I had plateaued. I found out that he couldn’t prescribe Mepron or Malarone to treat babesia.

At that point I decided to go to the US.
A lot of people in BC go to MR in Seattle but I had mixed feelings about him.
My husband and I were discussing where to go and he asked me if I had my choice who would I go to - and I said Dr J in DC and he said “let’s go”.
Dr J is also an Infectious disease dr.
Yes I have to travel for some of my appts. Every other appt is a phone appt.
His appts are spaced out - first two months, then 3-4 months , then 6 months and now a yearly appt.

So I am finished with the aggressive treatment now and on a maintenance program.

Most of my symptoms have resolved but still have a few left - hoping they will leave too!
It’s been a long haul for me - started treatment in 2014 ....


Re: mcas - I’m not sure if I still have it - I really should try the Quercetin again..

morningstars,
I saw your post this morning but didn’t know what to say. I’m kind of in the same boat and was literally thinking along the same lines just before I read this regarding what if it’s all just MCAS.

I have horrible mold illness and have had odd issues since childhood. I also had unexplained stretch marks appear in childhood as well as unexplained scratches on my body in more recent years. I guess you could say I also had a weak positive for Lyme but much more suspected bartonella.

I have recently come to the conclusion that most of my symptoms are likely MCAS. I am only taking Xyzal and Cromolyn Sodium for it. At one time, I took NeuroProtek (which I didn’t like) and AllerDHQ and DAO. I didn’t feel like the DAO did a whole lot. Not sure if the cromolyn is doing much either. I have so much toxin pain.

Like you, just this morning before reading this, I was mentally wondering if it’s all just MCAS. Then I remembered that something had to trigger the MCAS. For me it was likely years of mold exposure. Still, something else happened to me when life altering symptoms started suddenly in 2009.

I think I have parasites, too, and probably heavy metals.

I wish I had answers for you, but I haven’t fixed myself yet. Just know you’re not alone. I am glad you decided to join and tell your story. Hope you will stay a while.

Actually, when I came on this forum, I was pretty convinced I either was born with bartonella or Lyme or had it since very early in life. Then when I read symptom descriptions of bartonella and babesia that were written by Wayne Anderson, I realized I had most of what he described as babesia since infancy or early childhood. I have never been sure of the validity of his distinctions between the two, because they are in some ways opposite of descriptions written by others. Regardless, there were so many oddities I had. Here are the ones I can think of.

- trouble falling asleep and staying asleep
- cold hands and feet
- tendency to chill
- unusually sensitive to light, sound, smell, and touch
- occasional ringing in ears (though it was normal and everyone had this)
- mild air hunger (felt like I couldn’t get a satisfying breath)
- many ear infections and tubes in ears as a child and frequent colds
- mottled skin that looked like purplish chicken wire, especially when cold (which was most of the time)
- tender feet (trouble finding shoes that didn’t hurt the bones on the sides of my feet; hurt to walk barefooted)
- frequent headaches and feeling groggy or lead-headed (started in elementary school)
- couldn’t run and play hard without getting out of breath and legs feeling like spaghetti noodles
- stretch marks inexplicably appeared on my thighs around age 11
- did not have the same stamina and physical fortitude as my peers; felt tired and didn’t feel great much of the time; had no energy for extracurricular activities and didn’t understand how my peers could get good grades and still be involved in sports or whatever; it was all I could do to go to school all day and do homework at night
- difficult PMS symptoms that my mother told me was normal because she had it too (too ignorant to know most people did not have the level of symptoms I did)
- moodiness, irritability, rarely felt really good or comfortable and at ease

All that was in childhood and teen years. My life altering symptoms didn’t start until age 39.

Post Edited (WalkingbyFaith) : 4/18/2021 8:54:38 PM (GMT-6)