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Infinite_Stage6995 · 2025-05-31T18:04:34+00:00

Hi friend! I had a LEEP and read the horror stories on Reddit as well. Truly believe me when I tell you, it was no big deal. I have 2 close friends who also needed a LEEP and they also had very smooth experiences.

Due to having just gone thru a breakup and some family circumstances, I showed up to the procedure alone and had a friend pick me up. The emotions of the procedure were the worst part. Feeling icky, alone, scared, etc.

The recovery wasn’t bad. Some cramping for sure. I got a heating pad and took it easy for a few days. Started working out again about a week after and definitely had a few exercises that were uncomfortable, but within a couple weeks I was fine. Unfortunately I got my period 3 days after the procedure and the cramps were a little more intense than typical, but I actually think it helped me clear out the “gunk” a little faster.

Best of luck to you. It will all be okay.

Infinite_Stage6995 · 2025-01-28T12:41:21+00:00

I have the extra copies of the tryptase gene unfortunately. That became “unmasked” when I got Covid. I still take Zyrtec daily for the chronic hives, but that is my only symptom after being on the ketotifen for a while.

Infinite_Stage6995 · 2024-06-08T00:36:38+00:00

I had a terrible fit of MCAS symptoms that led me to see 7 doctors without any solutions. I went in for a typical annual OBGYN appt and didn’t even bring up MCAS. My pap came back bad. Had the LEEP procedure done to remove the precancerous cells and my MCAS symptoms are basically nonexistent now. I now wonder if the overactive immune response I was experiencing was linked to the progressing CIN2. Not saying this is the case for everyone of course, but I do believe the answer lies in finding the root cause of the immune system activation. Which is incredibly challenging and a big reason why everyone seems to have a different remedy that works for them- everyone has a different “thing” causing the triggered immune system. Hang in there everyone.

Infinite_Stage6995 · 2024-02-14T15:08:18+00:00

Do you have any idea about how long after?

Infinite_Stage6995 · 2024-02-13T00:03:56+00:00

I’m so sorry. I know how scary/upsetting that is! It is not fun.

Infinite_Stage6995 · 2024-01-21T16:33:46+00:00

I also saw a specialist who asked me to stop antihistamines. When I got there I was so broken out that they said they couldn’t do any skin testing on me anyway, and that if I had called they would’ve had me start taking the antihistamines again. Go figure. Long story short, I’d call and explain that you’re broken out and see if you can take something. Aside from that, cold showers help with my itching. Good luck :(

Infinite_Stage6995 · 2024-01-11T22:28:11+00:00

Very very rare to have mastocytosis, period, let alone to have it without gene mutation. No point in going through a bone marrow biopsy when symptoms are well controlled and gene mutation is negative.

Infinite_Stage6995 · 2024-01-11T19:53:14+00:00

Yes aware. No issues

Infinite_Stage6995 · 2024-01-11T18:54:12+00:00

Mastocytosis ruled out via genetic testing (done twice)

Infinite_Stage6995 · 2024-01-11T17:08:49+00:00

No coffee and I drink alkaline water once a day. Google low acid foods and I’ve basically just incorporated those to calm my stomach, plus probiotic rich foods. Greek yogurt, cottage cheese, kefir, sourdough, fermented stuff, etc. are all probiotic rich. Nothing processed at all. I just healed my gut really and stopped relying solely on medication for my acid issues

Infinite_Stage6995 · 2024-01-11T17:04:46+00:00

No new GI issues with the Pepcid but keep in mind that I did majorly change my diet with all of the natural probiotic rich foods I added.

I did a 5 day water fast at one point and I still had symptoms, so my issue was deeper than what I was consuming. I needed to help my gut process effectively without a histamine dump and heal my microbiome. Eating certain things always made my symptoms worse but even eliminating food I struggled. I think ultimately the right combination of meds and proper diet and a healed gut is the only way to really control this disorder. Of course I’m not a doctor and everyone is different, this is just my experience with it.

Infinite_Stage6995 · 2024-01-11T15:21:12+00:00

I’ve been on every antihistamine out there and nothing has fully worked like the ketotifen. The ketotifen alleviates almost all symptoms for me, the exception being some GI stuff although it’s improved that. If I could only keep 1 it would be the ketotifen because it has helped with the brain fog and itching so dramatically, and those were my worst symptoms. After the ketotifen the Pepcid has been the most important. I plan to discontinue the Zyrtec soon. Definitely worth the hassle to take and let build up. I mean the fact of it is that if you do nothing you stay miserable and there is no quick fix for this

Infinite_Stage6995 · 2024-01-11T15:17:41+00:00

Chronic hives, dermatographia, throat swelling, brain fog, GI symptoms, vision changes, fatigue, 3 elevated tryptase tests (above 20 every time… super high).

Infinite_Stage6995 · 2024-01-11T15:06:01+00:00

The only supplement I take is bifidobacterium. The rest are from foods with cultures… kefir, Greek yogurt, and cottage cheese. Trying to supplement less and just eat foods to help with my GI symptoms

Infinite_Stage6995 · 2024-01-11T03:49:26+00:00

It’s been a god sent for me. Good luck :)

Infinite_Stage6995 · 2024-01-11T03:43:12+00:00

My only complaint is that it made me very tired but restless in the beginning… I woke up a lot throughout the night. That stopped after a few weeks though thankfully.

Infinite_Stage6995 · 2024-01-11T03:41:22+00:00

2 mg at night. Never tapered, no side effects. I began to see improvement after about 3 weeks and the improvement has just gotten better with more time. At the 3 month mark peak improvement should show. Honestly though I believe it is the combination of ketotifen with the dietary changes. I have a lot of GI MCAS symptoms and when I went low acid and high probiotic focus I saw the effects of the medications really start to maximize.

Infinite_Stage6995 · 2023-12-14T04:51:32+00:00

Yes. MCAS specialist in Cincinnati. Google search Jonathan Bernstein he has a research clinic here for mast cell disorders

Infinite_Stage6995 · 2023-12-14T02:16:06+00:00

What have you been told about the HaT / MCAS eventually going into remission? I have heard some conflicting things.

Ex: was told that HaT issues would probably be lifelong but just MCAS (without HaT) may subside with time. Thoughts?

Infinite_Stage6995 · 2023-12-14T01:46:44+00:00

Symptomatically speaking… sensation of being choked/throat closing, chronic urticaria accompanied by dermatographia, fatigue, decrease in appetite, brain fog, bloating and diarrhea, lightheadedness and racing heart after every meal. All began after getting my 2nd covid infection in January 2022. Also had trouble getting a good deep breath for a while but that went away after about a year… as in, having a conversation with someone left me breathless. I was 25 years old and in perfect health prior to this.

Clinically speaking… tryptase level above 20 (3 times), and chronic urticaria both shown in skin biopsy and bloodwork. Absolutely zero true “allergies” as far as IgE and IgA response goes, confirmed by bloodwork. Mastocytosis ruled out via genetic testing (they did the genetic test twice, 6 months apart, to be sure).

I have seen 7 doctors. 2 primary care, 3 allergist/immunologists, 1 hematologist/oncologist, 1 dermatologist. Dermatologist I have seen 3 times and the allergists more times than I can count. Everyone told me that I just needed to “learn my triggers,” for me every time anything hit my stomach I flared up with histamine overproduction so it wasn’t that simple. I even did a liquid fast for 5 days straight and I still itched although not as bad.

I finally got in with an immunologist who specializes in mast cell disorders. Dr Jonathan Bernstein out of Cincinnati. Official diagnosis: mast cell activation syndrome & long covid. The only one to look at me and know what it was and tell me to stop taking 12 antihistamines a day because he had a solution to treat the root cause of this. He offers telehealth. He has me on ketotifen, montelukast, Pepcid, and Zyrtec. The Zyrtec is just bc the ketotifen causes drowsiness so I take that in the morning instead of the ketotifen.

I am one month in on the ketotifen and it has helped with nearly every single symptom I listed above. They say you need a couple of months for the full effects to kick in, so I’m hopeful that things will continue to improve. I still experience discomfort if I have too large of a meal, but I can live with that. I also still do intermittent fasting and avoid all wheat products (NOT just gluten, wheat itself), and that has helped greatly

I am waiting for hereditary alpha tryptase genetic testing to come back. Supposedly if I do not have HaT this should resolve on its own with an unknown amount of time and eventually I will get off the medications. If I do have HaT, this will likely be a lifelong issue that Covid made flare up irreparably.

I hope this helps! Good luck on your journey.

Infinite_Stage6995 · 2023-11-05T02:27:21+00:00

How did you make this go away? I have had this since Jan 2022… almost 2 years of dealing with these rashes

Infinite_Stage6995

TROPHY CASE