posted
Hi, can anyone share with me their experience with this test.
What it is like, and how the results affected your treatment.
Thanks.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
They did my test wrong.
I got the IV and all and, despite my being very chemically senstive, that part went fine.
But I soon tired and my legs started to give out. This happens a lot if I don't keep moving. So, I've learned to pump my legs - pushing on my feet to help keep from passing out.
I did this during the test but did not know not to.
The interns/residents were in the room and must have noticed but didn't say anything.
When the doctor came and in and saw me, he said "you're NOT supposed to do that" - when I explained that it was sort of second nature by now - and since he's seen me pass out many times, he just had to clinically dx the NMH.
So, if you have the test done, be sure it's done correctly.
Still, I could not take Florinef. Sea Salt helps - but Marnie just posted some stuff about regular table salt - and Na's effect with lyme - the other day.
Be sure you have some sea salt each day, though. The kidneys and adrenal's must have a little salt each day to help our blood pressure.
AND - adrenal herbs are the very BEST thing to help the kidneys, too. If you have an acupuncturist or naturopathic doctor, they may have good information. Ashwagandha or Siberian Ginseng (not a true ginseng).
You would also look at the work of Arnold Peckerman, MD and Paul Cheney, MD regarding cardiac impedance.
d-Ribose might be your very best help.
Bottom line, tough, if there are sympathetic (para-sympathetic or the automomic nervous system dysfunctions, they can be CAUSED by lyme + co. Getting to the underlying reason is best.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Definitely worth it. They strap you to a table and tilt it up just short of completely upright and leave you there I think for about 40 min. You are strapped to the table so you can't fall.
You are not supposed to pump your legs but I think I did too but I still failed. They do inject you w/medication to try and induce symptoms.
If you do come back positive I would try to avoid meds if possible and try to control your symptoms with salt and fluids unless of course you absolutely need meds.
I wouldn't hesitate having it done. I've had 2. I have heard that some people describe it as the worst experience ever and although it wasn't the best experience I've had it was far from terrible. Good luck!
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Yes. It may detect POTS- Postural Orthostatic Hypotension. This condition can make you so exhausted. My daughter was pretty much bed-ridden until diagnosed and treated with POTS.
We thought it was the lyme. She is much better. I would, if possible have a knowledgebale cardiologist do the test who will be able to prescribe best treatment. POTS, I keep hearing improves as the lyme abates.
Posts: 56 | From Virginia | Registered: Jun 2007
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I did some reading on NMH and POTS. I finally found an explanation that was very simple.
It really does not sound like what I go through, and have a feeling tht this is just going to be another expensive test that will not be of much help.
How can they tell if the symptoms are from
NMH, POTs, encephalitis or vasculitis?? I know
that this brain is still swollen, not as bad as
it was. I think that is what the problem
is.....but I am not a scientist. Has anyone had
this test and found something else that caused
their symptoms?
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I've never had this done, but think I may have POTS. I also have tachycardia and low blood pressure.
Sometimes I cannot stand for long without getting short of breath or feeling very weak so that I have to sit down. What is strange is that this doesn't happen to me all the time. I think with lyme treatment it has gotten better.
This seems to come and go for me. One day I'll be fine and will be able to be up on my feet all day even and the next won't be able to be on my feet for 10 minutes without feeling like I'm going to faint. Not sure if that's consistent with POTS or not.
I am going to ask my new LLMD about this when I see him in August.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I had this test done because I had passed out twice, had EEG's and nothing was found.
The test resulted in NOT having POTS.
So, for me, it meant that my collapse was a reaction (Herx?) to the herbs I was taking at the time.
I guess it depends on what you're trying to find out and what you'll be able to do with the information once you get it.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I had this done for one of my disability cases, recommended by my attorney, I think.
I already had a dx of NMH and the test left me a real mess for a month afterwards. A few days after the test I was driving to an appointment three miles from my house and I looked up and had no clue where I was going. It was scary. Only time that has happened to me.
For me, it wasn't worth the after effects. I didn't win the disability case either.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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lymed - i have that problem now with driving - i am afraid this test is going to really mess me up
i can't even roll over in bed without the vertigo
yesterday had an echocardiogram - they need it done before the tilt table test - the young tech was impatient when it took me so long to move into position for her - i can't move my head too quickly or i experience the vertigo and nausea
lymetoo - you mention babesia and fainting - how does this relate to babs? i don't test pos for anything but lyme (and myco - but that was 6 years ago) the bart treatment has gotten me this far -
do most people pass out on this table... i am afraid that i am going to experience the "seizure like" episode again - last time it took a week to "bounce" back if you can call it that - still not right
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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