Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
So I'm working with mainstream (non Lyme-literate) doctors to get some control over my fainting. I also have a lot of benign irregular heartbeats that I take a beta blocker for and some other issues like weight loss, and an inability to tolerate temperature changes which may be related to the ANS damage as well.
So far the meds aren't working great. I passed out on Saturday in a really bad way. I FELL to the ground with very little warning and had no way to stop it. Luckily a pile of clothes prevented me from smashing my head on a tile floor.
I think the symptomatic medications (florinef and midodrine) will eventually work when I'm brave enough to raise the dose up high enough. I worry about raising Florinef too high. I'm on 0.1 right now. Two cardiologists want to get the Florinef dose up as high as 0.4 but since I don't take antibiotics........I have very strong concerns about anything that has even a remote chance of immune suppression. Even though Florinef doesn't have the typical immune suppressing effects like Cortef and Prednisone, I feel like it's a big risk for me to take a high dose of any steroid when I'm not on antibiotics.
I asked the EP if I'd have to be on these meds forever and he said probably. That was really an upsetting thing for me to hear since I never take medications and I'm fairly young. I'm not looking forward to a lifetime of pills just to be able to have some control of my BP and stop myself from collapsing out in public.
The doctor was not overly knowledgeable about Lyme, but he was about fainting and this type of autonomic nervous system problem. He had common sense and was not condescending. He said in my case the autonomic nervous system problems ARE caused by Lyme.
Has anyone reversed autonomic nerve damage with herbal Lyme treatment? I don't have access to IV antibiotics or even orals. I know this type of manifestation is fairly serious. I have my doubts that herbs will be strong enough. Hoping to hear some success stories.
I have tried all natural alternatives before the meds to try to stop the fainting (caffeine, licorice, ashwagandha, high salt diet, rhodiola, fluids, etc.).
posted
Summer, Can you do IV Saline? That helps my BP get up a little bit. I run super low normally.
Sorry to hear about your bad passing out episode!
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I don't have access to IV saline. I don't have a PICC. Not sure a mainstream cardiologist would go along with that. If it ever was suggested I'd jump at the chance at this point since I could also probably infuse glutathione which is the only thing that helps me (other than B12 and magnesium).
posted
For irregular heartbeat, I have taken supplements supposed to help: calcium-magnesium-zinc combination tablet(over the counter), and CoQ10 together. This combination helps my occasional irregular heartbeat.
Have you checked the Magnesium links topic here? You might check your symptoms to see if magnesium deficiency might be part of your problem.
It apparently doesn't help to test the blood for this. A supplement used by someone on the forum helped them, Remag, and the website for that is given.
Posts: 254 | From North Carolina | Registered: Nov 2013
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Read here. Ccsvi in actually Caused ANS It's all vascular and this disease blocks up blood flow and that is not just an oxygen problem but it's being proven it's more importantly causes ANS. I found it ironic I saw your post as I have recently been researching this
* With good blood flow to brain mechanical energy is transferred to the autonomic fibers that travel along the outside of the vein. This alters the ANS communications between bodies organs and the brain.
Pm me for the site of the doctor who is researching and helping people if u like.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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