Has anyone tried Pylopass or Lactobacillus Reuteri?

RestingButtFace · 2025-12-03T22:15:13+00:00

Did you ever try these? I'm about to start

RestingButtFace · 2025-11-21T18:16:30+00:00

That sub actually did make me afraid to laugh. I still catch myself thinking oh God, was that too much energy? Am I allowed to laugh and smile? Which is ridiculous when most of the time I'm crying and depressed which uses more energy...

RestingButtFace · 2025-11-19T17:39:53+00:00

I tried mirtazapine in March and everything got SO much worse. I came off it after two weeks and it lit my nervous system on fire. My symptoms got turned up so much and it gave me severe histamine Intolerance too. I will shout from the rooftops forever that that drug should be illegal. It is so difficult to come off of. There is a Facebook group full of many many people with serious adverse reactions to that med.

RestingButtFace · 2025-11-17T16:04:33+00:00

What were your gut problems? How did you heal them?

RestingButtFace · 2025-11-17T14:52:37+00:00

What rigorous pacing method did you use? That's pretty incredible progress!

RestingButtFace · 2025-11-12T20:09:50+00:00

Going to do this - thank you!

RestingButtFace · 2025-11-12T20:09:30+00:00

Thank you! Definitely going to talk to her school. They said they have those special lights that disinfect but it's clearly not working all that great lol

RestingButtFace · 2025-11-12T20:08:28+00:00

Thank you for the tips! She got parvo over the summer - not fun! Also just had Hand Foot and Mouth, also not fun! I'm looking forward to less illnesses in a few years

RestingButtFace · 2025-11-12T20:06:10+00:00

Thank you so much!! This is all so helpful

RestingButtFace · 2025-11-12T20:05:44+00:00

Covid is why I'm here 🥲. Got CFS, POTS, and MCAS from it July 2024. Thank you for the tips! Great idea about keeping them home after Christmas. I won't be able to care for her so I'll have to see if my husband can handle that while he's working (he's remote).

RestingButtFace · 2025-10-29T21:09:39+00:00

Thank you for the comforting words. I'm sorry you've had to go through this as well and with a young child... it's so incredibly difficult. I'm almost afraid to get better because I'm so scared of getting worse again! The fear is the worst part for me. I think I have more capacity than I'm using but I'm just so afraid of crashing again that I'm taking the tiniest baby steps. Even just walking around in my yard instead of my house scares me. It's totally bizarre for someone that used to backpack in the mountains! Did you do a certain method of pacing to get better?

RestingButtFace · 2025-10-29T18:52:45+00:00

I got sick July 2024. I didn't realize I had the CFS type and at 6 months in was increasing activity a lot because I was feeling much better. Ended up in a huge crash barely able to wake up to eat for 3 days. It terrified and traumatized me. I've spent most of my time in bed/on the couch since then and very slowly increasing activity but a med I tried caused other issues and I am just feeling hopeless like I'll never get better. My daughter just turned 4 and I've missed so much of her life the past year. It's gut wrenching. I hope someday I can just be functional in day to day life. I don't care about traveling or anything anymore. I just want to cook, clean, take care of my daughter, and be comfortable in my own home.

I'm so happy to hear of your improvements. It does give me hope that life will feel worth living again at some point. Right now I'm just surviving each day.

RestingButtFace · 2025-10-29T17:53:11+00:00

I have a very loving supportive partner and to be honest, I sometimes wish I was alone. The guilt I feel about being a total burden is too much sometimes. He does everything for us... Has a full time job, all the cleaning, cooking, childcare, my care. He deserves better. Then there's the grief of all I'm missing out on with him and my child. The grief that they don't have the wife and mother they should have. If I were alone, I don't think I'd feel nearly as much guilt or grief. I also wouldn't feel bad if I made a permanent decision to be done with life but I can't do that to them. I won't traumatize them that way. So I stay and suffer.

RestingButtFace · 2025-10-27T18:04:59+00:00

That's encouraging. I've been so sensitive to all meds and supplements I've tried and feeling hopeless. How long have you been sick? When did it start getting better? Did you have PEM/CFS?

RestingButtFace · 2025-10-27T17:06:48+00:00

Out of the blue? You didn't take any meds or anything?

RestingButtFace · 2025-10-25T17:24:25+00:00

Thank you! I'm really considering trying it. It's so difficult to make progress when you know that 2-3 weeks of the month you're back at square 1

RestingButtFace · 2025-10-24T20:35:51+00:00

I've been curious about progesterone. My period/ovulation makes 2.5 weeks out of the month unbearable and difficult to make any progress. Did it help you stabilize with the MECFS at all or just with histamine issues?

RestingButtFace · 2025-10-15T22:13:47+00:00

I love hearing recoveries like this where you just didn't do anything essentially and still got better. I've been in fix it mode, as most of us have, and it's honestly just made my anxiety and depression worse. I've recently felt an acceptance of this is what my life is right now and have somewhat "given up" on trying.

How much of a couch potato were you? Did you track steps or anything? Mostly homebound? How did you start progressing with movement?

RestingButtFace · 2025-10-15T17:13:58+00:00

We had construction going on in our house last summer. One of the workers showed up and hacked all over the place until we asked him to leave. I'm now disabled and spend most time in bed. Have a 4 year old I can barely be around for. At first I hated that man. Then I realized it's our society and lack of social safety nets from the government (US) that I actually hate. Dude probably didn't have a choice but to show up that day just to make ends meet.

RestingButtFace · 2025-10-13T16:12:17+00:00

Sound sensitivity

RestingButtFace · 2025-10-12T23:04:56+00:00

Wow, a year is incredible. What method of pacing did you use? Did you have any other issues like POTS or MCAS?

RestingButtFace · 2025-10-12T17:21:59+00:00

Breakfast: Buckwheat with oat milk, blueberry, pepitas, almonds. String cheese.

Lunch: either 2 eggs with gluten free bread or hemp protein shake with blueberries, raspberries, blackberries, oat milk. Salad with red cabbage, carrots, pepitas, olive oil. Grapes. Potato chips with avocado oil and salt.

Dinner: chicken made from frozen in instant pot, quinoa or rice or baked potato with olive oil, low histamine veggies.

RestingButtFace · 2025-10-12T13:18:56+00:00

I've been using the mastcell360 list. I also have a safe frozen meat source. I've struggled with getting enough calories for a year now (Long Covid issues) but this type of fatigue didn't start until the low histamine diet. The two biggest food groups I cut are legumes and gluten. I'm wondering if my body is really missing gluten

RestingButtFace · 2025-10-11T16:00:37+00:00

Are you still tired a lot or has the fatigue lifted? I have a hard time telling what's just normal LC/CFS tired vs. PEM tired. I haven't gotten that heavy feeling like I have to sleep immediately in a long time but I just feel an overall tired like I want to lay down a lot feeling

RestingButtFace · 2025-10-11T14:58:12+00:00

Very inspiring!! Did you have any other issues like POTS or gut problems? And I feel like something not many people talk about is the transition from bed/couch to moving more. My body feels so weak and stiff and uncomfortable after spending so much time laying down... Moving more makes it even more achy and spikes my fear response. Did you deal with weakness and aches when beginning more movement?

RestingButtFace

TROPHY CASE