ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My sickest and youngest child has POTS. So far he is not in the clear. He has bart and babs. How long did it take for your POTS to go away? Can you start back up on florinef? Did you ever see Grubb?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I have both Bart and Babs. I hope you get it all figured out!!
Posts: 265 | From Oregon | Registered: Aug 2009
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I never took florinef or beta blockers, couldn't tolerate them. It gradually got better over the course of a year with treatment, and was totally gone by the 2 year mark-I was walking for 50 minutes 3x/wk and doing yoga/pilates 2x/wk by then.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I am so glad you posted this. Dx'd in 2007 with dizziness, and in 2008 with CFS, then in 2009 with Lyme. I just started a beta blocker last night-propranolol. This was prescribed by an internal med doc, but since my main problem is dizziness/balance/nausea, i welcome this non-abx treatment. I became sickly thin on oral abx, and even more GI problems.
Tolerance is okay with this drug so far..fingers crossed. It's the original beta blocker manufactured in the 1960's.
I read in previous posts that treating BABS makes the gastroparesis and POTS symptoms magically disappear. I treated for Lyme, BART, and BABS for 1.5 years, and i've got worse POTS symptoms now...although i got off abx and everything got worse. Except i can hold a steady weight of 122 and i'm 5'7. Oral abx with gut issues has it's consequences. Best of luck in healing.
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
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posted
beths-you said POTS got better gradually after 2 years of treatment. Can you explain further what meds you took to get that battle won?
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Bactrim/zith rotating with malarone-and detox!
The toxins affect the vagus nerve. I just took baths, and drank detox tea or lemon water.
I lost 25 lbs-and I'm 5 feet tall to start. I tried to heal my gut -have a great acupuncturist. Took l-glutamine, DGL licorice and probiotics.
When I first went off abx, I was worse due to the toxins flooding out.
Posts: 1276 | From maryland | Registered: Jan 2009
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I have a FIR sauna (dry heat), which i used religiously but i had the extreme shakes even though i had lemon water before, during, and after. POTS patients are intolerant of heat.
The vagus nerve is infected for sure, but the beta blockers (low dose yet) seemed to help immediately with my moving around. I still experience extreme brain fog, speech dyslexia, and word problems, and the nausea suckx. There are veteran POTS peeps, and i am the NEWBIE. Looking for help. I'm on super salty chips, compression stalkings, beta blockers, wellbutrin, and soon to add an SSRI.
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
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