posted
So my ANS was severely screwed up when I initially got ill. BP was really high all the time as with resting heart rate (over 100). I had orthostatic hypertension (not to be confused with hypo) and orthostatic intolerance. I still have the intolerance as I can't exercise at all or stand very long without feeling bad. Had tilt table test, echo multiple times, stress echo, holter monitor, 21 day heart monitor, numerous CTs and MRIs all over my body, catecholamines checked, thyroid checked, etc. I feel cold all the time, but my body temperature is fine (even in the morning). I had an isolated episode of hypothermia/confusion (93 deg F) with CT showing nothing significant at ER. The confusion and anxiety state persisted for a couple weeks, and is still partially there. Although it's [BOLD]MUCH[/BOLD] better after stopping antibiotics and taking neurotoxin binders.
I went to a sauna the other day and couldn't sweat. A little sweat came from my forehead, but nothing significant. I felt like I needed to sweat. When I was well, I know I would of sweat A LOT.
Anyways, my LLMD referred to to an Autonomic Nervous System Specialist. There are several in the area, but I never heard of this type of specialist. Anyone here been to one? What do they do?
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For a start, there are a few links of interest from a Google search of the term "Autonomic Nervous System Specialist"
Most likely, you will be evaluated for POTS and NMH and for vasal-vagal reactions. They may do a tilt table test. POTS and NMH are low blood pressure things connected to the nervous system. I'm too tired to explain but you can google the terms and also check out much more at the "CFIDS Chronicle" website.
Beyond that, I'd love to learn more, too, from others' experiences if they have seen such a specialist.
Since your LLMD has referred you, I'm assuming this specialist will understand how lyme affects all this and not discount you for that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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massman
Unregistered
posted
ANS is ultimately run by the hypothalamus. Why would one need a "specialist" - to run all the fancy, expensive tests ?
And how would a "specialist" treat it ? Drug it into submission ?
I have heard of + seen alt docs concerned with ANS imbalances but never an MD or DO. Would like to hear more about this.
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I have been to one...mine was a cardiologist, but he specializes in autonomic dysfunction. My guess is that quite a few of the specialists will be caridologists.
He was really good overall, and he was also understanding of Lyme. He said that Lyme or any other serious infection can make dysautonomia (autonomic dysfunction) worse.
Generally the recommendations he gives are things like the prescription Midodrine, or lifestyle changes like strengthening leg muscles, NOT avoiding salt, electrolytes, or wearing compression stockings, to name a few.
He'll also want you to avoid any drugs or herbals that can cause hypotension, which can make some dysautonomias worse.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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posted
Also, a lot of times you don't diagnose it with fancy, expensive tests....the diagnosis is often based on clinical findings like measuring blood pressure before and after standing, etc.
My doctor told me I didn't need a tilt table test because he already had enough criteria to diagnose me after examining me.
Another cheap way to know is if someone gives you a "bear hug" where they wrap their arms around you and imobilize you so you can't shift your weight on your feet......and it drives you insane and makes you feel like you are gonna pass out....that's basically the same as failing a tilt table test, in my opinion.
Because it's saying that holding you still and immoblizing you makes you feel like you're gonna pass out, which is what a tilt table test measures.
I have a hard time standing if someone holds me in place, like with a hug where my husband pulls me into his body while standing, but my feet are on the ground.
People with dysautonomia also tend to cross their legs when they have to stand in place (as an adaptive move, to push blood upwards), or they will do things like sitting on one leg when in a chair. They hate not being able to have their feet touch the ground while seated.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I went to one at the Cleveland Clinic before I knew I had lyme. He was a cardiologist that specialized in this.
I didn't need any testing other than checking my BP standing/sitting, ect. The nurse came in and checked my BP. She just kept doing it and I wondered why.
Dr. Grubb came in and stood me up and checked it and I passed out. He caught me thank goodness. My BP was 102/90. That was proof enough for him. I never had any tests done. He said anyone will pass out with BP that close together.
The treatment was the same as Hoosiers stated but he also said to be sure and stay hydrated. I don't think she mentioned that.
He said there is usually an underlying cause, it's just hard to find sometimes. Of course, now I know it was lyme.
He was one of the most compassionate drs I've ever been to. He stood there and held my hand till I was feeling better.
A couple of weeks after I got home I got a package and it was a book from him titled "When Bad Things Happen to Good People". I was shocked. I'm sure he does this for all patients.
I heard he got cancer and it made me so sad. I don't know if he's still around or not but I sure hope so. He was one of a kind.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Sapphire, I saw one of his Nurse Practicioners. Nice place, but the wait time was astounding. 6+ hrs just to see the person. It was a LOT LOT LOT to deal with. I would've seen Dr. Grubb next time and was warned at times the wait could be 8+ hrs.
The office acknowledged TBIs slightly, but didn't seem to have a good knowledge base on the connection between ANS issues and Lyme. They seemed to think it was like EBV or other issues. They're all just a 'bucket' of unknowns. If they were more educated on TBIs, it could be very useful. They tried to push a drug on me that made me lightheaded.
THEY NEED TO LEARN WHAT BABESIA IS!!!! Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
It was somewhere around 2003 when I saw him. It wasn't like that then. That's a long time to wait especially when you are sick.
Unless he hears from his patients about the connection to ANS problems and lyme he really wouldn't have a way of knowing.
I don't know the best way to contact him but it sounds like a bunch of us need to let him know that. At least, he might look in to it more.
Even if he did know that's the cause I don't think his treatment would be any different. It might help him to help his patients if he were more aware though.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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massman
Unregistered
posted
Thanks for the info and for the links, too.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My LLMD is very knowledgeable about this and has presented at ILADS conferences on this topic. It was the first of my symptoms he addressed due to the severity of it at the time. It continues to improve with treatment, both for Lyme and Babs.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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gackedo
Unregistered
posted
I went to see a cardiologist who specializes in autonomic dysfunctions and had extensive testing done. There are several tyes of autonomic dysfuntions (dysautonomias) and the results of the tests help the cardiologist differentiate which one/ones you have. And the type of medications that he will recommend for you are determined by the type of dysfunction that you have. You can use the following wesite to find a cardiologist who specialize in autonomic dysfuntions:
I have a dysautoniomia called POTS (postural orthostatic tachycardia syndrome) and the medications that I have started have really helped me feel better. The medications don't cure anything but they help control my symptoms of fatigue, dizziness, shortness of breath, and racing heart when I am standing.
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posted
You are very welcome Massman. Not sure who you were referring to but just in case.
This is actually the worst part of this disease that I deal with. Fortunately it doesn't act up all the time but when it does it's terrible. It's been acting up a lot lately.
It's so much better since lyme treatment so there is hope for those that have it.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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posted
Ok, wow, the doctor he wants me to see goes way beyond any of the stuff mentioned here. According to the website the clinic is supported by grants from the NIH, NASA, American Heart Association, etc. The clinic is running nearly a dozen different studies right now. They have a thermoregulation lab to tests for abnormalities in thermoregulation and several author autonomic function labs. A total of 7 labs, including a hyperbaric and water immersion lab for both healing and aerospace traning.
I was questioning why my doctor was sending me here since I have had all the standard tests done, but now I think I know why. This facility sounds cool, and I want a tour. Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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