I am a 35 years old guy from Spain. I've following this wonderful community since I got my MC diagnosis in June 2017, only reading, never writing until now. So the first thing I would like to do is thank you for such a valuable information and support, I really appreciate your devotion, specially Wayne's.
Despite being so rookie as a forum participant, I've been trying to read and learn as much as possible during this time, and of course I read several times your main work, Persky. Your book is always in my shelf and I'm used to look up every doubt I have on it. On top of that, I can't forget to mention the newsletter which I'm always looking forward to. Very up to date.
As most of you, I hold the opinion about GI's limited understanding of the disease, so here I am, on my sixth series of budesonide, with some important questions with no sort of answer, yet.
Thus, I want to share with all of you an abridged version of my story, because I've learned nobody will have a better point of view than a sufferer has.
------
Everything started to get really wrong on my first year at university, on my nineteen's. It was a very stressful moment with a lot of changes for me. I remember I was obsessed with working out, physical appearance, my first girlfriend etc.
As a consequence, I guess, I developed such a strong insomnia, and I met every benzo out there, always accompained by an SSRI (I remember sertraline among others). They prescribed these as candies...
My twenties went by on this situation, combined with therapy of course, and as far as I remember, in some moment in between I started experiencing daily diahrrea.
In 2014 I bottomed out, I only slept a couple of hours every other day, my anxiety blown up almost to the the sky, eccemas on different parts of my body, addicted to benzos and I'd been suffering diahrreas everyday for years. So my family invested money we didn't have on a clinic of reputation here in Spain... They put me on different SSRI and more benzos... But they added the tetracycle mirtazapine.
Such a improvement on my gut! After only 3 or 4 days, my watery diahrrea started to improve as never before during the last years. I knew that SSRI changes on brain takes longer... But at that moment I didn't pay to much attention, I started to feel amazing, and not only my gut. My sleep was good enough, my strength increased, my pains lessened. This lasted two years, It was unforgettable after so many years suffering.
That dream came to an end, and my gut syntoms and anxiety returned. This time my family doctor, at long last, sent me to GI specialist and they made some test on me: lactose intolerance and gluten antibodies, nothing was found. Finally they looked at my colon throught biopsy and found Lymphocytic MC. The diagnosis was in 2017. I was expecting some diet changes or tips but they just put me on endocort.
With budesonide I improved, no more diahrrea. But some months after quitting it, the symptoms came back. So, on my own, encouraged by this community, I quitted gluten (even today I continue eating GF).
After some more budesonide series, they recommended me trying prebiotics, and probiotics. It was even worse, so they ended up putting me on Imurel (azathioprine).
I was on that drug one year and a half. I was totally drained, no energy at all, I could hardly workout, or even going upstairs without feeling exhausted. Also my blood analysis showed my liver transaminases very high, also my cholesterol skyrocketed. The worst part: My diahrrea continued and I got an infection in my foot, which lasted months (I didn't want to take more antibiotics so I was stuck to topical ones). At this point I decided quiting azathioprine on my own.
That was on June 2021. Next I did was starting vit D, doctor best Mg, I quitted eggs and dairy. Basically I put myself on stage 1 diet, which I continue on so far.
I feel that It helps, but at this point I don't tolerate small quantities of rice any more, and the joint pain (very occasional before) is now on my daily basis (fingers, knees) and the worst is that I experience some sort of tendonitis or enthesitis in arms and shoulders. Besides, I cannot tolerate high histamine food items at all, my whole body itches. I feel like this is getting worse.
One thought of mine is that, mirtazapine as H1, generated kind of tolerance some years ago, I clearly noticed like my seasonal fever during first two years on Mirta was a piece of cake but this year was like hell on earth (same as before). By the way: my DAO in blood is perfect.
Last week I went back to another doctor. She put me on endocort followed by mesalazine, trying to keep effects from the first along the time...
At this moment I continue taking fluvoxamine(SSRI), mirtazapine and quetiapine. Each time I ask a doctor about a possible relationship with MC they just shrug, really...
I've already tried quitting, at least SSRI, twice! But I failed despite doing it slowly. Doing that on my own is hard. Without any support by the GI specialists, and even against their opinion (family doctor). I got really scared, because I experienced insomnia again and diahrrea during the process. I realized I've never really quitted totally, after more than a decade.
----
As additional info, my sister (4 years younger) was diagnosed with celiac disease 3 years ago and this month with Lupus. I've never drunk alcohol or smoke any drug. Maybe all of this is not related at all, but I like to mention it, just in case.
So, all in all, here I am opening my life to all of you and practicing my English
What is your opinion?. Is there somebody with a similar story on SSRI drugs? I really don't know if they are hurting me or not, but I tried everything but this, and doctors look at me as If they didn't know what I'm talking about. It's unbelievable the lack of knowledge about MC, at least in Madrid (Spain).
Is there any other option for me out there? Something to consider? I'm totally open minded and any advice is welcome.
For real, thank you so much to all of you.
By the way, during last years I've always kept an eye on drug induced MC and this year this meta-analysis came out: https://pubmed.ncbi.nlm.nih.gov/36067746/
Another interesting articles related to serotonin:
- https://www.researchgate.net/publicatio ... testinales
- https://pubmed.ncbi.nlm.nih.gov/32967429/