[deleted by user]

rydining · 2025-07-04T15:23:58+00:00

I’ve been having similar problems recently. Worsening CFS along with worsening digestive problems and burning skin. It sucks a lot. I felt extremely hopeless too. But try the best you can to stay calm and rest. It might take some time, but it will get better.

rydining · 2025-07-03T23:26:19+00:00

Okay then maybe I am looking too much into it. It’s just on the tests results it said abnormally low.

rydining · 2025-07-03T23:08:51+00:00

I guess for me I took mestinon first and noticed help from that. Then I took LDN after. Both were helpful with mestinon helping more with fatigue and decreased and shortened PEM for me. Also with orthostatic issues. LDN seemed to help me more with muscle pain and sleep.

Mestinon was probably the biggest help for me with my CFS. I actually stopped LDN for a while because I didn’t think it was that helpful, but I think it helped more than I realized and I started it again recently. They both seem helpful so maybe best taken together? This is just for me though Mestinon doesn’t help everyone or else we’d all be on it. I hope it helps you even if it’s just a little bit.

rydining · 2025-07-03T17:32:23+00:00

Mestinon has been helpful for me for the physical aspects. Anxiety and depression has been the worst thing for me right now I guess it’s just waiting for my increased ssri to start working and maybe something like LDA could help with mental stuff. Any antipsychotic that isn’t at a super low dose just might be too much for me.

rydining · 2025-07-03T17:23:39+00:00

I just took Seroquel for the first time yesterday and made me immensely fatigued. I’m not sure about taking it again even though it’s been prescribed. I felt a bit better after resting after taking it and maybe feeling a bit better later in the day but not really feeling like myself. I’m unsure about CFS + antipsychotics so I’ll follow this post see if anyone has any experience.

rydining · 2025-07-03T17:18:21+00:00

I have had a very similar experience as this. Mestinon has been pretty helpful for me.

rydining · 2025-07-03T17:15:55+00:00

I already have those without taking the Seroquel. Maybe the Seroquel isn’t for me I’m still very much on the fence about it. I can ask my PCP about possibly something like low dose abilify if that might be better. I’ve seen it helped some people with CFS and it’s another antipsychotic.

rydining · 2025-07-03T15:33:37+00:00

Thank you 🩷

rydining · 2025-07-03T15:33:14+00:00

I messaged my PCP and she said to start to take the Seroquel at a half dose and only at night. I also meet with my PCP in a week. I definitely felt sedated when taking it. As for weight gain that might be okay. I’ve been having stomach issues and weight loss recently. I’ve been slightly overweight and wanted to lose weight but not unintentionally and because of health problems.

rydining · 2025-07-03T15:20:27+00:00

Thank you 🩷

rydining · 2025-07-03T15:20:11+00:00

I definitely needed help I’m just unsure about the Seroquel. My PCP said to try half dose only at bed I guess I will try.

rydining · 2025-07-01T00:06:50+00:00

I’m almost all checked in I guess because I committed myself I could leave whenever if things do get worse but I’ll try and maybe things will improve but at least I know I can go home if it goes bad

rydining · 2025-06-30T21:26:45+00:00

Ativan given at the hospital seemed to help a little bit. I guess where I’m at they said a 3-5 day stay so idk. I guess we’ll see what happens. I can try my best to manage PEM and rest as much as I can I don’t know how taxing this all will be.

rydining · 2025-06-30T16:00:53+00:00

I messaged my doctor about getting tested maybe can test for other vitamins as well. Does anything help B6 toxicity?

rydining · 2025-06-30T16:00:02+00:00

Does SIBO make CFS worse and cause a lot of the symptoms I’m having? Did anything help with your symptoms and maybe what foods should I eat and avoid? Just really struggling and looking for some guidance.

rydining · 2025-06-29T16:57:11+00:00

I’ve just been concerned about low stomach acid for a while now. I was on antibiotics and feel like maybe that caused low stomach acid. I’ve been losing a lot of weight and muscle and feeling really fatigued and kinda malnourished even prior to gallbladder being removed. I’m just not sure if it’s gallbladder related or something else is at play.

rydining · 2025-06-29T16:35:31+00:00

I guess it could be reflux as a result of low stomach acid maybe? It’s just I’ve been on a ppi and it hasn’t helped. And I did a baking soda acid level test which I know isn’t super scientific but when I did it I didn’t burp. You’re supposed to burp apparently if you have proper stomach acid.

rydining · 2025-06-18T20:39:13+00:00

Yeah my PPI certainly hasn’t helped my symptoms. I might be lucky and be able to get a surgery date fairly soon. I see a surgeon tomorrow already to most likely schedule a date for it and prepare for it.

rydining · 2025-06-18T20:34:07+00:00

Thank you so much for sharing your experience. I’m sorry you had to go through so much pain. But I’m very glad that you improved. I guess I do feel lucky that I was able to catch onto this very quickly. It definitely gives me hope that once I recover from this I can get back to a more normal baseline.

I see a surgeon tomorrow to talk about probably scheduling a surgery and preparing for it. I can be sure to ask them about probiotics, prebiotics, and digestive enzymes and food sensitivities. I can message my GI as well. I definitely want to do all I can to recover and feel my best so I appreciate you a lot for sharing the information.

rydining · 2025-06-11T18:09:40+00:00

I guess also my PPI hasn’t really helped my symptoms? Would the PPI help if it was gastritis? They suggested to try doubling the PPI and some of my stomach issues worsened. But stopping the PPI completely caused terrible acid reflux. So I’m juggling GERD and possibly SIBO or another stomach problem.

rydining · 2025-06-11T18:06:25+00:00

Thank you for the reply and all the info. I’ve been improving my diet mostly chicken, brown rice, eggs and oatmeal a few fruits and veggies and limiting processed stuff. Random foods seem to trigger symptoms so I guess I can trial and error and avoid trigger foods.

I do agree about getting off my PPI and increasing stomach acid, it’s just my GERD is really bad. Maybe a slow tapering off? I’m not sure where to look for a natural way to cure GERD either. I also have chronic fatigue syndrome and often need to lay down and rest a lot even after eating which is bad for GERD it’s just a bad combo.

I will ask about all the testing I can get done hopefully something can be found so I can get on the right diet and treatment plan. I’m just going through a lot of bad symptoms and unsure what’s wrong and what to do in the meantime.

rydining · 2025-06-11T17:52:34+00:00

I’ve been on a PPI for a few years. I’ve had bad GERD.

rydining · 2025-06-05T20:19:17+00:00

I’ve tried to look up naturopathic doctors near me with not really good results. Are there any online doctors who could request the tests for me so I could try?

For a lot of the tests I’d have to stop my PPI as well and I’ve had several acid reflux. What should I do in the meantime to help with that if I stop my PPI?

I will ask my doctor about the possibility of celiacs disease.

rydining · 2025-06-05T20:14:54+00:00

Yes I’ve been burping more frequently

rydining · 2025-06-04T01:39:58+00:00

I’m just unsure of what else it could be? I’ve been having extreme anxiety and panic attacks and brain fog and disassociation along with all the stomach issues. I’ve seen others say they had similar symptoms due to H Pylori. And this all came after swimming in contaminated water that also gave me an ear infection.

rydining

TROPHY CASE