u/Flashybigbum

I think the first thing I’d have done differently is to get the MMA and Homocysteine tests while I was waiting for the B12 shots to arrive from Germany.
Also I’d have started taking electrolytes ( K, Na, Mg with added phosphorus), a multi and a trace mineral complex to prevent the depletion on other micronutrients when ramping up the organism with B12 shots/ Folinic Acid
And Iron of course.

Hi, I upped the dose on Saturday night from 0.5 to 1.0 as my practitioner asked to up weekly. Because it seemed to give me a boost at night I started on Sunday to take the dosing in the morning, Sunday was a good day, a bit impatient but I seemed to have a lot more motivation. My mood was good.
My Garmin says I didn’t sleep well last night and my HRV seems a bit messed up since I upped the dose.
Today I feel tired, I’m not motivated but I also don’t feel anxious or like a normal PEM crash. Just fatigued and feeling like I should just rest.
For context I had a day surgery last Tuesday and I’m quite bloated still.
Shall I wait and see how this evolve in a couple of days or maybe go back to take it at night?
My body seems to react differently to the same things in a random manner is really frustrating.

I’m curious to know why so many of use get headaches when titrating LDN. I certain woke up with one today and felt a bit like a migraine or a tensional headache but also one provoked by dehydration.

Other than the headache that was totally bearable I’m feeling really motivated. Which is good! I’m taking LDN for the PEM from Long Covid so I need to the careful not to overdo it. Certainly i feel happier so far and only at 0.1mg/ml

Even the bioidentical type makes me weak and demented I don’t know what to do. Sometimes it can help me sleep but if I take it more than 2 days in a row I can’t think straight I feel weak. Is not that I can sleep any better anyway.

I’ve been suffering from severe insomnia. You can see I posted about this a few times.
This could be anecdotal but worth a try.
I did a few bits and pieces yesterday (I have ADHD,so pacing is hard) and went to the corner shop (1 block) on the way back I felt I was coming down with a crash. I read somewhere that sodium bicarbonate could help to stop the PEM crash so I went for it of course. I rested after that but the most insanely effect for me was that I slept like a baby for the first time in MONTHS without the need of meds.
I did take the progesterone orally in the odd chance it would help me. It never does just makes me weaker.
I also read that this is something that SHOULD NOT BE DONE EVERY DAY but as a once in a while, once a month or something I think could be a good helper for us non sleepers.

I used to never sweat I thought of it to be a good thing back in time.
Now I have POTS from Long COVID and I have episodes of profuse sweating ( to my standards)
Could anyone shed some light on this? Is there a relationship?

This might sound odd and I apologise in advance but I’m the type of person who connects dots as a way to understand better.
A while ago when this long Covid nightmare started, my first symptom was physical, I had a really bad piriformis pain and I could barely walk I did some PT sessions and on the last one they did some dry needling on another muscle that got resented after following the exercises they prescribed. I felt enormously well manic even with a lot of energy right after and a few hours later I got a massive episode in which I felt really unwell and my hands were a bit swollen and painful. I had to lay down and felt fatigued. Ever since I’ve been dealing with these episodes and I thought them to be PEM but I can’t sleep so just recently I found out that I suffered from POTS most likely the hyperadrenergic/ neuropathic kind, but not sure.
Anyone has had any bad reactions to dry needling?

I want to add this I have Long COVID (POTS, PEM)

Any side effects when taken together, or improvements? Thank you

B1 shots I inject EOD and even taking high iron supplementation I go like clockwork. Is the BEST solution for your constipation issues and you can have as much as you like because is not toxic.
Wish me luck, god knows I need it

I started taking Famotidine 20 mg morning and night alongside Fexofenadine 60 mg morning and night. I think it helps my sleep but I just took it to see if would help with my POTS and I'm getting sleepy and not major changes in HR.

Anyone has a similar experience? Or maybe is the low dose propanolol thats making me tired?

Sorry 3rd day.
I’ve been taking 0.2 ml morning and evening so 3 doses of 0.2 in total and I feel sad like when I was waning off the dose of antidepressants.
Is this a thing?

I have random itchiness and weird spots on my upper arms and side of the face neck sometimes, random sneezing and some either dryiness or runny nose or mucus that drips on the back on my treat but I I have a friend with MCAS and she can't eat anything. I don't see direct correlation to any of the foods I eat apart from alcohol that I was never able to consume much and now in menopause I can't even think of.

I'm generally really sensitive to medications and supplements but not to the extreme I've seen in some people. Is this still worth pursuing? I have all the other dysautonomia, POTS, PEM from Long Covid, most likely ME since always that has gotten extreme after COVID.

Now I know with such a low dose maybe the side effects won’t be as severe. That’s the reason why I decided to go for 0.2 first But I did have sort of a full story kinda dream, it wasn’t a nightmare in the classical sense but I was in a relationship with Bo from the TV show Superstore 😂😂🤦🏼‍♀️

"Some drugs interact with LOWTREX-LDN®. Therefore it is important to talk to your doctor or pharmacist about any medicines and supplements you are taking such as, but not limited to:

• Pain killers (such as opiates or tramadol)
• Sedatives
• Hypnotics
• Antidepressants
• Blood pressure medications
• Heart medicines
• Cannabis (including cannabis oils, supplements andCBD vapes)
• Cancer medications"

I sometimes take bezos to sleep bc insomnia is terrible, might have to start taking an antidepressant and in fact I took 3 days of Mirtazapine last week so I could sleep, I discontinued bc It was bad for my POTS and also, are blood pressure medications Betablockers? I'm taking 30 migraines of Propranolol divided in 3 doses to keep my hyperadrenergic POTS at bay.

And I wanted to get some cannabis instead of the array of things I take for sleep as it has helped in the past.

Is this a problem? I will not be able to take it if I cant take a beta blocker my POTS is insane.

Hello, I'm waiting for the delivery of LDN to arrive tomorrow morning, tomorrow afternoon I will have some small procedure to see my womb, I have Long Covid that has been getting worse for the last 18 months since the GP's have spend more time double guessing me and treating me like a hysterical person instead of being curious and caring. So here I am, a wreck and a shadow of my former self, hoping this will work. (sorry, I'm having a bad day)

Shall I wait a few days after to get started or I can take my first dose if I feel ok later on the day of the procedure? I will take paracetamol and ibuprofen before the procedure.

Hello, I'm trying to understand the difference in symptoms as I believe I have a mix of a few types of POTS but mainly hyperadrenergic (my CNS can't shut down)

I've been reading old posts around Reddit but I am confused because I have POTS symptoms constantly and what I think it is PEM is like an exacerbated state of doom and anxiety that renders me insane basically. But I am unsure because I'm trying to understand all of this on my own. As you know primary care doctors are arrogant and clueless in my experience.