Dysautonomia

I have dysautonmia.....not really bad though.

Mine is mainly the POTS. It only affects me if I'm sitting and then stand up. Or if I'm bending down (to pick weeds for example) and then stand up.

I wonder if that's what happens to me every morning. I wake up with some anxiety...and I used to also sweat...although not sweating most mornings....anymore.

bluelyme said...
the adrenaline surges were actually spasms near them whenever my bladder would fill up . waking me up horribly. i almost became addisons like with white spots . iv magnesium if unavailable try topically over kindneys for relief until you can clear offending pathogens and heal the nerves and adrenals . load up buffered vit c and sleep by any means

for pots i got away with eating raw licorice for acute episodes and drinking sea salt solution until i dosed alot of l. planterium probiotics which seemed to reinflate my veins like nitric oxide production went up . georgia hunters science aint wrong imo ...careful of blood pressure my pulsile tinnitus was like a timpani drum ....

Bluelyme can you explain a little more about the spasms? I’m curious because my daughter continues to have urinary issues. She has a frequent urge to urinate but also has times starting urine stream. Her dr feels she may be having bladder spasms because her nervous system took such a big hit. She also continues to have sweats mostly at night which I know is typically babesia but I often wonder if it just nervous system dysfunction.

Girlie yes I was thinking Bart as well. Very stubborn symptom for my daughter

A lot of us with Lyme and co-infections (and chronic fatigue syndrome/myalgic encephalomyelitis, and Ehlers-Danlos, and other conditions...) have some form of dysautonomia. It's common. Have you found a specialist with any actual expertise in dysautonomia? The specialists are rare, sadly.

When mine is bad, I wear compression stockings and do things to stimulate my vagus nerve (there are lots of lists online for ways to do this, and posts on this forum as well). I also take magnesium, burbur-pinella, Jernigan Neuro-Antitox, and adaptogens for nervous system health. I make sure to get at least 1.5 teaspoons of salt per day (non-iodized) and lots of water to maintain blood volume. Make sure also to get the nutrients you need to keep your adrenal system fortified, like omega 3 fatty acids and whichever adaptogens work well for you (they can vary a lot). Make sure your other hormonal systems are well-balanced, too, as all the hormone systems affect each other. Another thing that has been helpful for me is limbic system retraining through the DNRS program.

So sorry you're dealing with this. I know it's maddening sometimes!

A (lot of my past doc.s have been familiar with dysautonomia but my current doc is the first one to put me on fludrocortisone. We'll see if that helps.

Bluelyme. Are you saying l. plantarum reduces POTS?

Anyone have the increased heart rate when sitting to standing?
My bp doesn’t drop too much - it’s mostly affecting my heart rate.


If you see this Aerose - is the
fludrocortosone helping at all yet?

My LLND suggested I take propranolol - but I didn’t want to take it

Aerose91 said...

Girlie said...
Anyone have the increased heart rate when sitting to standing?
My bp doesn’t drop too much - it’s mostly affecting my heart rate.


If you see this Aerose - is the
fludrocortosone helping at all yet?

I can't say it's helping anything yet. However the derealization is so thick it's hard for me to monitor small changes in things. Either way it's nothing major if it is

Aerose,

Have you been reading the Disulfiram posts? Someone else with symptoms similar to yours is doing it and is getting better. I’ll try to find the specific post and link it here.

Found it. It was Brab8878 on one of your other posts. See all of his posts on page 2. He tells some informative details.
https://www.healingwell.com/community/default.aspx?f=30&m=4140849&p=2

Post Edited (WalkingbyFaith) : 10/7/2019 9:57:51 AM (GMT-6)

Aerose - are you still with the J clinic?

I asked DrJ about it and he said it’s too early to tell if DSF is going to be useful.
He said he had a few patients taking it - but he isn’t endorsing it - they’re doing it “on their own”

I don’t know if that means he will give a prescription for it or not.

No, I don’t think that about DrJ.

I believe he won’t endorse something he hasn’t thoroughly studied, and knows it to be safe and effective for treating lyme and co’s.
He is a very busy dr - he does a lot of teaching (including his NP’s/PA’s). Training these practitioners allows them to take on more patients. Otherwise it would be a very long time to get into the clinic for treatment.
He recently had a conference in the UK.

I think it’s still early to know if disulfiram is going to be an effective protocol for lyme.
So far it looks promising....

@JovaLyme...your last line had me dying of laughter!

Hoping you're getting somewhere in your NHS journey!

That is kind of interesting however I know here in the states ( I live near DC) many of the IV metabolites are on the FDA chopping block as of this year. I believe iv curcumin is being restricted as of 2020. And don't want you to circumvent the process by simply paying a nurse practitioner to come to your house to treat you. They're using the guise argument that manufacturing quality control consistency cannot be guaranteed for IV use......of course ignoring the fact that most Americans don't realize many of their pharmaceutical drugs are synthesized in a warehouse in India.