posted
I went to a lyme doc - ILADS member and all- he did not know anything about POTS - postural tachycardia and really what to do for me.
I am considering switching to Dr. H in NY - would he know about POTS and what to do about this mess?
Is there anyone who was treated Dr. H for POTS?
And are his PA any good?
If you have POTS and got better, please PM me the LLMD who treated you.
If you have a general answer please post here but PM me anything more private. Thanks.
Posts: 581 | From CT | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Rather than switch LLMD's- IF you could even get an appointment- why not look locally for someone who can diagnose and/or treat POTS on its own and has the tools needed to properly diagnose it.
The doc doesn't have to be a LLMD to do that, and LLMD's aren't necessarily suppose to be experts in POTS.
You maybe should have a doctor locally who does work with POTS (everyone should have a local primary care doc to handle this sort of stuff and more), especially considering the treatment is not a one-size fits all and patients must be monitored closely.
Consider this...
"POTS can be difficult to diagnose. A routine physical examination and standard blood tests will not indicate POTS.
A tilt table test is vital to diagnosing POTS, although all symptoms must be considered before a final diagnosis is made.
Tests to rule out Addison's Disease, pheochromocytoma, electrolyte imbalance, Lyme Disease, Celiac Disease, and various food allergies are usually performed.
A blood test may be performed to verify abnormally high levels of norepinephrine present in some POTS patients."
Also consider this...
"Beta blockers such as atenolol, metoprolol and propanolol are often prescribed to treat POTS. These medications slow down the excessive heart rate response (tachycardia) that POTS patients experience.
They also work by blocking the effects of epinephrine and norepinephrine released by the Autonomic Nervous System. In addition, beta blockers reduce Sympathetic Nervous System activity by blocking Sympathetic impulses.
For some patients, Beta blockers increase POTS symptoms (e.g., lowering blood pressure, increasing fatigue, which is why they are often prescribed in conjunction with Midodrine). Beta blockers may be dangerous to individuals with asthma or allergies."
posted
Thanks for the opinions. I do have a local doc to treat the POTS symptoms but I find it discouraging that my LLMD knows nothing about POTs or the autonomic dysfunction.
Posts: 581 | From CT | Registered: May 2008
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
My LLMD's knew what POTS was, but not much else. I saw a cardiologist, familiar with it, who basically told me to drink more, add salt etc. He was hesitant to prescribe meds.
Happy to say with lyme/babs tx, it is going away
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
How can you keep your standing heart rate down without a beta blocker?
Posts: 581 | From CT | Registered: May 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You do use a beta blocker for this! All diagnosed and rx'd by a dr who knows about it, of course. Cardiologists are usually the ones to do the tilt table test an to treat.
I actually had my LLPA at the time simply dx me by my clear low BP, and other symptoms, and rx flornef and a beta blocker. He knew enough to do that without the tilt table test. Not all LLMD"s will do that though. Most probably want a cardio to dx. But then they are often willing to rx after that.
Posts: 3771 | From around | Registered: Mar 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My LLMD was trained by an expert in dysautonomias before he was even Lyme Literate. Mine was so severe it was the first issue he addressed. I couldn't even sit up for 30 minutes without needing a nap.
When I drove (I'm single and had my 90 year old mom and son with a severe mental illness living with me, so I had to drive) I had to put my feet up on the dashboard at lights.
Once I had to lie down in the back seat of my car after shopping, using a power cart. I threw my legs over the back of the seat to get the blood back out of my feet and into my upper body.
I look back and shudder, but it was all I could do at that point.
The church had declared I had received too much help, so nothing from them. They actually cut me off four days before Christmas, saying they knew someone would be in town who could cook for us. No one was.
Anyway, I know of others who see cardiologists for POTS. I am just lucky I found a doctor who knew how to treat it.
posted
Thanks. I am now on a beta blocker and florinef. I hope this helps as I treat the underlying cause.
Posts: 581 | From CT | Registered: May 2008
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