Hi, can anyone share with me their experience with this test.
What it is like, and how the results affected your treatment.
Thanks.
Posted by Keebler (Member # 12673) on :
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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.
I'll check back later with some links for you.
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Posted by laura j (Member # 14257) on :
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!
Posted by kpa (Member # 12079) on :
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.
Posted by njlymemom (Member # 15088) on :
Hi - thank you for your responses.
I understnd why the llmd wants to rule this out.
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?
Posted by disturbedme (Member # 12346) on :
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.
Posted by Cass A (Member # 11134) on :
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
Posted by lymednva (Member # 9098) on :
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.
Posted by Lymetoo (Member # 743) on :
My test was screwed up too. The nurse did NOT tell me to stop the Inderal LA for 5 days as she should have.
She told me 24 hrs... so when I didn't pass out, the cardiologist asked me about the beta blocker I was on.
When I told him I was on the LA, he said I should have been off it for 5 days, not 24 hrs.
So, we didn't find out much of anything. I'm sure I would have failed the test had it been done right.
At any rate, I couldn't take florinef, and my lyme treatment has improved my fainting problems.
Make sure you're treated for babesia if you are having problems with fainting.
Posted by njlymemom (Member # 15088) on :
ok, now i'm scared
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