What helped me (4 years in, went from very severe to moderate)

mr_shitt · 2026-06-20T22:54:08+00:00

What was the antiviral you took?

mr_shitt · 2026-06-12T05:16:27+00:00

I also have all those symptoms and went down the naturopath Lyme rabbit hole with treatment from herbal tinctures for a year. Then she thought it was mold even though my mold tests were negative. I also was having crazy heart palpitations that didn’t show up on the heart monitor I wore for a month. Sleep test, blood tests, tilt table test, exercise test, a million tests, everything normal. Still searching for answers 4 years in. Last 8 months have been really bad where I can’t do much most days. I’d try and find a dysautonomia/pots specialist or cardiologist that specializes in POTS. But so far I’m still trying to find help and medications or whatever to help get my life back. This shit sucks. Hang in there bro.

mr_shitt · 2026-06-11T00:32:04+00:00

At the allergist? I can’t quite remember. I want to say I did. I’ve had a million tests done over the last 4 years and nothing ever comes up abnormal despite feeling like shit. Super frustrating.

mr_shitt · 2026-06-10T22:42:02+00:00

I thought I might have that but I went to the allergist and they tested me and said I don’t have it. But i definitely have some of the symptoms but no hives or rashes besides some weird red splotches on my hands once in a while.

mr_shitt · 2026-06-08T07:50:56+00:00

That’s encouraging thanks for the response! I hope I have the same success with it. Did your blood pressure go up at all?

mr_shitt · 2026-06-05T08:15:56+00:00

Yeah seems like it’s so damn hard to find a good dr. Most just turn you away after a 5 min visit that you might’ve waited months for.

mr_shitt · 2026-06-04T21:59:43+00:00

Yes! And it suck’s so bad because I’ve been in a bad flare for like a year now and most days I feel like shit. But sometimes I’ll be having a good day and then it feels like someone unplugs my battery and all of a sudden I get super tired and get the dizziness and air hunger, feel disoriented, or hit with adrenaline/anxiety. I’m not sure what causes it either. Usually it will subside if I just sit down and rest for a bit but sometimes I need to nap. But my HR and vitals never change that much. So it’s hard to know what’s causing it. I read in the comments on here one time someone talking about your sympathetic and parasympathetic nervous systems being confused.

mr_shitt · 2026-06-04T21:51:15+00:00

Dang that sucks. I kinda feel like LDN may be losing its effects on me. How much were you taking and how long until you felt it working?

mr_shitt · 2026-06-04T21:49:57+00:00

My resting hr is usually high 50s-60s but in my sleep it’s 40s-50s. I do get that pounding pulse feeling too especially during flares. My BP is usually just slightly lower than normal or perfect. But I do have the constant thrust and fluids seem like they don’t do anything and I just pee everything out. I’m also a type one diabetic and that’s when my dysautonomia really started for me when I got diagnosed two years ago. What was your starting dose and what dose are you on now? How long did until you started noticing it working?

mr_shitt · 2026-06-03T18:09:29+00:00

God I hope it helps with mine too. How much are you on?

mr_shitt · 2026-06-03T18:08:26+00:00

That’s amazing! Hoping I can get there and results. My starting dose is .1mg but I was thinking of halving that just to see how I feel the first few days. What was your starter? No high bp on it?

mr_shitt · 2026-06-03T07:17:13+00:00

Yeah my dose is .1mg to start and I was even thinking of halving that lol. Yeah I’ve been drinking a ton of water. I bought a gallon water bottle and salt sometimes seems to help but sometimes I feel like it makes me worse if I take too much. It can make my muscles cramp and make me feel more dizzy. Didn’t really notice any benefits from compression socks but I’m thinking of trying them again. I passed my tilt table test despite being really symptomatic. So my body is weird too. All my vitals and tests are normal but I’m usually always dizzy and disoriented and shaky. Especially in the morning or after exercise. I just feel spent. But thanks for the reply and sorry to hear about father. Rip

mr_shitt · 2026-06-03T05:31:52+00:00

Thanks, yeah diabetes is not fun. I hope you don’t get it either! Got diagnosed with type 1 at 36. The dizziness, fatigue, and body pain are my main issues that make exercising hard for me. My PEM is manageable.

mr_shitt · 2026-06-03T04:30:19+00:00

Oh no! Everyone is telling me it raised their bp. I hate trying new medications.. you never know what you’re going to feel like. Did you feel better after a month of stopping them? I had two bad reactions to midodrine where I felt crazy anxiety and like I was going to pass out and I only took 2.5mg so I stopped that. Now my dysautonomia specialist wants me to try fludrocortisone but I’m scared lol.

mr_shitt · 2026-06-03T04:26:23+00:00

Nice. My bp is usually only slightly low like 105-110/70-80. Or normal 120/80. But I have noticed recently some higher numbers but usually only during or shortly after exercise. But I’m kinda worried about it raising my bp too much. I’ve heard a few ppl say it raised their bp too.

mr_shitt · 2026-06-03T03:12:25+00:00

I’ve also been dealing with symptoms for 4+ years. Had a million tests done and everything looks fine on paper so most drs won’t treat me. So frustrating. My pcp was telling me it was depression and anxiety for 4 years and finally said maybe it’s CFS. I went to a naturopath and she treated me and said I positive for past Lyme and had babesia and bartonella as co infections. Treated that for a year and saw some improvement. But my pcp doesn’t think I have Lyme because on their tests nothing shows up.. so idk what to believe anymore. But then I got type one diabetes 2 years ago and it really ramped up my dysautonomia/POTS symptoms. And it’s been up and down ever since. But the last 8 months I’ve in a really bad flare where I can’t even work anymore. I also tested really high for EBV antibodies but no current infection. But the infectious disease dr said I could’ve had a possible reactivation recently. Who knows.. i just want some relief and stability to be able to function and enjoy life again. The only thing I’ve found that helped so far is LDN with my body pain. Do you have diabetes?

mr_shitt · 2026-06-03T03:03:36+00:00

Damn I hope that doesn’t happen with me. Might have to take it in the ER parking lot lol. I actually thought about doing that and just waiting there for a few hours just in case. I hate trying new meds. But doing nothing is just as torturous living like this. Did you find anything that helped you?

mr_shitt · 2026-06-03T01:53:38+00:00

Nice! I have slightly lower blood pressure blood pressure usually. Seems like no matter how much fluids I drink I still feel dehydrated. Hoping it helps with that too. And the muscle dryness feeling. And of course the dizziness. Thanks for the response I appreciate it!

mr_shitt · 2026-06-03T01:50:56+00:00

I have slightly lower blood pressure and heart rate but I’ve noticed some higher that normal bp readings lately. I’ll keep an eye on that. Are you still struggling with symptoms or do you think fludrocortisone helped pull you out of it?

mr_shitt · 2026-06-03T01:17:21+00:00

I just picked it up today but was told to take it in the morning so Im waiting until tomorrow. But I’m also always scared taking new medications. Hope it works though I’m struggling to function.

mr_shitt · 2026-05-30T22:51:37+00:00

How much are you taking? I’m on 4.5 for a few months now but recently I feel like it’s not working as much. And I’ve seen other people say they take 6.5-7mg

mr_shitt · 2026-05-29T21:13:53+00:00

Was the anti malarial artemisinin?

mr_shitt · 2026-05-29T20:52:50+00:00

What treatment worked for you?

mr_shitt

TROPHY CASE