u/Ok_Wish_2291

Realistically, how many years away are we?

CW: improvement

Hi everyone, I started taking pycnogenol 100mg recently and it is helping that lactic acid muscle burning/heaviness feeling so much. I was getting that even not in PEM in my thighs. I can walk twice as long now. I’m not getting PEM from things I was getting it from. It’s also helping my sleep and POTS. I think this is from the pycnogenol helping endothelial dysfunction and assisting with better blood flow.

I just wanted to pass this along to yall. I know everyone is different and what works for me might not for others and also talk to your doc about trying anything new of course.

For context I am Mild-moderate.

I added this combo to my long list of meds I’m already taking and it’s made a very obvious quick improvement to my leg muscle fatigue and pain and PEM. My PEM symptoms are insomnia, muscle pain, sensory sensitivity, worse POTS.

Is this explanation that this helps blood flow/ micro clots? My doc had recommended this months ago and I just now decided to give it a try.

Is anybody currently seeing Dr Vaughn? I’d like to connect!

This is my normal day during the week:

Wake up 7am and take meds

Sit outside and have coffee

Work for 4 hours on computer with an hour break in the middle laying down in dark room

Make easy lunch

Mom brings baby (11 mos old) home and chat with mom briefly for 15 mins.

Put baby down for nap

Relax for an hour on the couch and look at phone while baby naps

Calm play with baby for an hour til hub comes home and takes over with baby

Rest in dark 30 mins

Make an easy dinner and eat

Baby bath and bedtime

Get in bed at 8

FYI:
Soft lighting no harsh bright lights
1500 max steps day. No stairs

I use visible and use about 7 pace points without PEM. I have PEM from doc visits and sometimes when I go out to eat or something.

My legs get very heavy and painful in my thighs when I walk too much also. And I do have some light sensitivity that has improved from LDA.

I was very mild and undiagnosed prior to having my daughter btw. Crashed badly when she was 4 months old. It’s been devastating. But I’m on treatment now and trying to pace.

Hey yall I’m not trying to stir anything up or be controversial at all but I’m wondering why is nobody talking about this protocol on here? I know there are no studies for it but patients are reporting massive improvements. Yes that’s anecdotal evidence but a lot of what we are trying and report back is anecdotal at this point. I just want to know people’s thoughts!

What treatments, trials, studies, etc are giving you hope right now?

I’m on all the meds: LDN, LDA, Mestinon, ketotifen, micro dose tirzepetide, and propranolol. My baseline has improved a bit then plateaued. I’m stuck around moderate/ mostly house bound. But I feel like I’m losing hope since I’m on all the treatments already.

I’ve recently had good success with LDA which affects the balance of dopamine. Dopamine is thought to influence neuroinflammation right? I’m just wondering about the overall influence of neurotransmitters and neuroinflammation. Is this why some people report lessening of symptoms while doing things enjoyable like vacation? I’m not saying this is a psychological illness at all, as I have it and that’s not the case. But I’m wondering do neurotransmitters influence neuroinflammation.

Is there a reliable way to test for these at this point? If so what are they? Thanks!!

I have a positive ANA so I believe my long covid as an autoimmune component.

What dose of Abilify has helped y’all and how has it helped you?

I have a positive ANA 1:160 heterogenous but nothing comes up positive in the reflex labs. Is there any other testing y’all would suggest I get? I know this is a sign of immune dysfunction but I’d like to know more. I have POTS, MCAS and ME all from long covid.

How are we feeling about the spring symposium? Hopeful? I haven’t looked into it much yet but hoping someone has some insight or information about what is being discussed.

That’s all. I feel like I don’t know what’s going on in my body. It’s hard to figure out pacing. This illness is so weird and challenging.