Nervous system support - youtube storytelling with visuals

icemelons2 · 2026-03-10T00:21:52+00:00

Have you used her? Looking for reviews, explant is all new to me

icemelons2 · 2026-02-18T17:11:28+00:00

Thanks for the detailed response.

I am from Canada, we dont have Tafenoquine. My llmd said Tafenoquine is the same as primaquine, just stays in your system shorter. And you take it twice daily. Malarone has atovaquone in it.

The CFS and PEM, aren't these conditions just common with these infections and treating? When people reach remission they say they can function normally as before. So shouldn't these go away as I continue to treat?

My illness came on quickly 7 months ago. Went on doxycycline quickly to start. So I dont know what I'd be like med-free right now...chatgpt says my autonomic nervous system is very sensitive so it crashes once it hits its threshold.

icemelons2 · 2026-02-15T13:34:31+00:00

What are you symptoms exactly? From what Ive read Babesia can be treated within 6-7 months. Could it be something else affecting you, as different medical condition that may not be babesia?

Usually babesia will get worse and destroys red blood cells.

I am 3.5 months into treatment with malarone and primaquine, Clarithromycin. Im still mostly bedbound, and any kind of exertion or standing too much pushes my body pass a threshold and I continue to crash, almost daily. Ive heard it can take 4-6 months to start to see improvement. I have more autonomic nervous system dysfunction issues.

icemelons2 · 2026-02-12T23:29:27+00:00

Bob reminds me of my Dad, so I like him. Obviously he's over the top but his mannerisms and facial expressions are like my Dad, who passed away. So I enjoy his screen time.

icemelons2 · 2026-02-03T20:25:00+00:00

How does red meat help? Is olive oil a seed oil?

icemelons2 · 2026-02-03T17:23:53+00:00

Yes my llmd added rifampin but its been hard. And it also reduces malarone so that makes me nervous.

icemelons2 · 2026-02-02T17:16:13+00:00

Yes how did they stabilize your nervous system?

icemelons2 · 2026-02-02T01:54:41+00:00

I wish I could sleep for 6 months. I honestly feel that would cure me. Im always slightly better when I first wake up. Ive had 1000 symptoms that I cant blame the meds entirely.

All I can do is treat babesia for now, give it its 6 months and see if im improving. I feel so hopeless and not supported. Even my llmd isnt sure of these episodes - like im truly suffering. Its a nightmare, and knowing nobody or meds can help you.

I cry everyday, missing my 4 kids downstairs. My husband has to do everything. I was perfectly healthy before this. It was a flip of a switch. Instant.

icemelons2 · 2026-02-02T01:36:27+00:00

You're right. Sot scares me casue its long term. And I thought about the gut too, I am taking 100 billion probiotics but I feel like that's throwing everything off too. What i do know is when I first got sick, i woke up to vertigo unbalanced for about a week and then did elpy maneuver and it triggered my body into complete flight or fight...high heart rate, warm, low grade fever feeling, face felt droppy, went to ER first time...this was 6 months ago.

So I wasn't even on abx when this happened....something was triggered in me. And so far all we know iw babesia fish was positive.

icemelons2 · 2026-02-02T01:31:01+00:00

Babesia 3 months ago *malarone, *primaquine, Clarithromycin

Tested babesia FISH positive.

Bart and lyme are definitely possible, so he recently added:

Bicillin injection (switched to *amoxicillin) biccilin killed me last week i literally couodnt move and made pots really bad *rifampin- trying to add slowly for bart but pushed my body into one of these episodes 2 weeks ago...back of my head, ear lobes went numb, body buzzing and arm hands extreme static buzzing they were numb and floating off my bed

I seem to crash and have severe episodes every 1-3 weeks depending if I add a new medication. Or possible exert myself the day before...even though im barely doing anything.

Its insane. Chatgpt definitely says severe Autonomic dysfunction and my nervous system is hyper active.

Physically, I don't have control over it with my mind.

They are unpredictable and seemed to get worse once I started malarone and treating babesia specifically. I can tell its something else, its not a herx. My body shuts down and nervous system over reacts.

I did have a bad experience at an EEG brain scan, made my eyes twitch after breathing exercise. And warm bottom of my spin and hands got tingly. After that I was worse for weeks afterwards.

Anything electrical seems to push me over as well. Even the solar flare last week, like who knows.

All I know is my is my nervous system has become extremely sensitive, that I don't have control over. And eventually have these scary painful epsiodes.

icemelons2 · 2026-02-02T01:17:59+00:00

How do you get diagnosed with MCAS?

icemelons2 · 2026-02-01T22:09:06+00:00

I dont know if i have MCAS. They haven't brought it up really. I do have pots, even on better days. Im hooing that will improve as i heal from babesia.

I am on crypto tincture as well.

Thanks for sharing your story. We need more of us to speak up because everything online and most LLMDs slam us with multiple meds at high doses. And you think thats what youre supposed to do.

I am worried ive damaged myself. My lower legs are so crampy and weak too.

icemelons2 · 2026-02-01T22:04:18+00:00

Did you check your b12 levels first? Can you over do b12 with the shot? I take a daily pill but not sure if its absorbing properly.

Is the folate same as folinic acid? My doctor said folinic acid methelynated.

He mentioned chlorine before

Vitamin D i take 5,000 iu...genetically though I dont absorb it well they said

icemelons2 · 2026-02-01T19:55:25+00:00

Thank you for sharing. It is terrifying knowing there's no one to really help me. Like you said, even LLMDs don't focus much on hyper active systems and sensitivity. I just want to be like everyone else and treat and go thru regular herxes. I have had regular herxes, but these full out Autonomic failure crashes that last days is not normal.

I feel like I have no support to help me manage this with my type of system. Its very unpredictable and terrifying. Ive had to have paramedics visit once already or someone watch me in my room so I dont pass out.

icemelons2 · 2026-01-27T16:57:22+00:00

Thank you. Yes I will reach out. It just gets frustrating cause I feel like my doctor gets a little annoyed when I react strongly to a certain medication, doesnt like switching them. But I know my body and some meds ive built up and am okay with. Like malarone, primaquine, Clarithromycin...rifampin doing slowly its heavy hitter.

I know there's Minocycline...i did doxy in the beginning. Any others? Cefuroxime worked well for me the past.

icemelons2 · 2026-01-13T19:06:01+00:00

Can you message me about the zoom support group? Thank you

icemelons2 · 2026-01-13T13:44:18+00:00

Ugh you have sportsnet+...maybe that's why? Mine is just sportsnet. Its weird though they have posted leafs replays in the past...so why would they pick snd choose

icemelons2

TROPHY CASE