Dizzy Dame

There is also an acetylcholine (sp?) sweat test that's more sensitive. This involves placing tiny patches of acetylcholine on parts of your skin. The acetylcholine, in a normal person, will cause you to sweat, but if you have nerve damage, you won't respond. Electrodes measure the nervous system's response to the acetylcholine. I have a very difficult time sweating at all, that's one of the reasons heat is my worst enemy. Instead of cooling myself off by sweating like a normal person, my body just sits there overheating until I pass out. Good luck!

Shoot! I should have taken a photo of his car illegally parked in that spot! Oh, well. Best not to think about it now... Thanks all for your support and warmth! People are becoming more violent as time goes on. I can't imagine what was in that man's head when he threatened me. He must have felt so big and strong threatening a disabled girl in a wheelchair! But I guess there was a lesson for me in that expereince as well, I'm not strong enough to defend myself if someone attacks me, so I best be on the defensive at all times. I shouldn't have confronted him, even if his reaction was unwarranted and outrageous. Next time, I'll just call the police and let them sort it out. Hugs, Lauren

Welcome! It sounds like your on the right track by trying different meds. Good luck with the midodrine, it made a huge difference for me so hopefully it'll help you as well! -Lauren

Hi all, This afternoon when I came home from the grocery store, I found that every last handicapped space was taken. The only available parking was quite far away from the building and it's hot out today so I knew I was in trouble. That's when I spotted a man and a young woman walking away from their car that they'd just parked in a handicapped spot. I noticed he didn't have a placard so I rolled down my window and asked him if he would move his car, since he wasn't disabled and I needed the spot. He answered that he was just running in for a second and would be back out very shortly. I told him that was fine and I'd wait for him and take his spot when he returned. 20 minutes passed and he finally came back out to move his car. At this point I was seething for having to wait so long for a parking spot, so I rolled down my window and asked him (in an angry tone) what took him so long, and that I've been waiting for the spot for 20 minutes. "f*** you b***" he responded and continued to curse at me violently as my boyfriend pointed out that I was in a wheelchair and that we really needed the parking. Then he treatened to "push me out of my f***ing wheelchair"! He got in his car and drove away. I called the police and told them what happened but they said there was nothing they could do. In the meantime, my heart's still racing because of the event. I've never been talked to like that before...and he really was acting like any minute he was going to come over to my car and hurt me. It was terrifying. I can't belive that someone would act that way, especially because he was very much in the wrong, and he should have been apologetic...not agressive. I wish there was something that could be done, but I don't think there is. I guess if I see his car in handicapped again, I'll just call the towing company rather than being nice and waiting for him to move. Thanks for letting me vent. -Lauren

Of course you can use that quote Emily! It's from a Jane Hirshfield poem. I've transcribed the poem below so you can read it yourself. Oh, and the poem is from her book, "The Lives of the Heart". Hope and Love All winter the blue heron slept among the horses. I do not know the custom of herons, do not know if solitary habit is their way, or if he listened for some missing one-- not knowing even that was what he did-- in the blowing sounds of the dark. I know that hope is the hardest love we carry: He slept with with his long neck folded, like a letter put away. Thanks for the tip about the three month trial! I really hope my doctor's okay with doing it, although if she isn't I'm determined to find someone who is. Of course, I'll let everyone know how it goes! Hugs, Lauren

Morgan, I wish you a speedy recovery and I really hope to see you back to your chipper self. Hopefully this new pacemaker will make a huge difference in your life! Hugs, Lauren

Two more, then I'm through: ...when you only have a one pair of pants, but you have a whole closet full of pajamas. ...when your relatives start giving you bedding for christmas and birthdays.

I hope you start to feel better soon. And be careful not to dehydrate. Don't be too proud to go to the ER for some fluids!

Hi Willows, I'm so sorry to hear about what your doctor said. Hopefully you could look for another physician who may be a bit more knowledgable? You'll be in my thoughts. -Lauren

This topic has been discussed many times before. If you do a search using the words "prognosis" or "improvement" you should find some really good topics that talk about this.

Yikes Maxine! I'm so sorry to hear about those legions! I hope the surgeon has some good ideas and that you start to feel a bit better! -Lauren

Thanks so much for your support, Emily! I'm sorry to hear you have a bug, but so happy to hear you've been improving slightly!!!! And I just know more improvement is yet to come. It's funny, when I got the "indeterminate" results I immediately thought of you and your struggle with lyme, because I remembered you had two positive bands as well. My GP does have experience treating lyme, and she's very well researched so I'd like to give it a go with her first. However, if I start to herx really bad and she feels out of her depth, then I will go to any LLMD who's willing to take on my case. However, I've been doing much better lately since the cooler weather started and I started mestinon, so I feel like I'm stable enough to handle whatever lyme throws at me...I guess you could say I'm mentally preparing to go to war. The lyme test was through stonybrook labs, which I've heard are very good, them and ingenex (sp?). I will be interested to take the test again after a month on antibiotics and see what happens. Hopefully I'll have a positively positive test then and I can put any questions I have about the diagnosis to bed. And I agree with you that patience is the most difficult thing to keep...but one of my favorite poets said "hope is the hardest love we carry"...and I know both of us are holding onto the hope we have with all of our strength. I hope that you and I both will one day be able to dance on the grave of our symptoms.

Thanks Malosp, I'm glad you improved on antibiotics. I'm really hoping to see some changes when I try them too After reading ariella's article, which stated that many of the "sickest of the sick" don't have postive tests because the body's given up fighting, that made me realize that perhaps I really do have lyme...or some pathogen running amok. I've made an appointment with my GP next week, and, of course, I'll keep everyone posted on how the trial goes! Hugs, Lauren

While my doctor recommended the wast-high stockings, I can't stand the way they feel and prefer to wear knee high ones. I know they work because if I stand for a few minutes with my stocings on, then take them off, I can see the lower half of my legs are pale and from the knees up is purple I do wear waist high ones in the winter time if I leave the house, but in the spring and summer it's just too hot for them and I get sick from overheating when I'm in them. It's kind of a catch-22. In my experience, most people with POTS wear some sort of compression hose, and most benifit from doing so

MG is the initials for Myasthenia Gravis, which is an autoimmune neuromuscluar disorder that causes muscle weakness after exertion. I've PM'd you about my doc at Hopkins, but he's an MG specialist...who ultimately was a bit of a disapointment when it came to thinking "outside the box". He ended up referring me to mayo because he didn't know what to do with me. However, if you think you may have MG he's the guy to go see...but if you don't think you have MG, then there's not much he'll be able to do for you.

Thanks for the article! I'll take it to my doctor when I make my case for the antibiotics. I really hope I can start the trial...and that the antibiotics work!

Can you call your pharmacy? Most pharmacies allow for phone consultations with pharmacists. I hope everything works out! -Lauren

Ariella, You and I have such similar stories! My doctors for a long time have argued wether or not I have MG. The issue's still unresolved since I technically tested positive for MG but don't really have the kind of muscle weakness associated with the disease. Thanks for commenting. Do you know of an article anywhere that talks about the seronegative results changing with antibiotic treatment? I'd like to present it to my doctor when I see her, if such an article exists.

Hi guys, I've made an appointment with my GP and I'm going to ask her if we can just start antibiotics. I'd like to try them for a 30 day course and see if anything happens. I figure the worst case scenario is nothing happens, and I stop taking them, but if I start to feel better than what's the harm? At this point I feel it's one of my only treatment options left because I've tried just about every drug for the POTS and while I've improved some, I'm still very, very disabled by it.

Lulu, I'm sorry you've been having a flare-up lately. Hopefully you're just fighting a bug of some kind and you'll be back to "normal" asap. Still, I know how scary and discouraging any setback can be...I always worry that I"ll never recover, but I always do, even if it takes longer than I'd like. You'll be in my thoughts. Hugs, Lauren

Hey Claire, My ELISA was negative, the WB was positive for 2 bands, but that's not enough to get a real positive result. The lab said the results were indeterminate. As for fibro, I was diagnosed with it a few years ago, but when I was evaluated at hopkins, I was told I didn't have fibro after a very detailed work-up. From my understanding fibromyalgia is a wastebasket disorder anyways...just a name they give people with chronic pain when they can't figure out what else to call it. I'm positive I have lyme...I just have to find a doctor who agrees with me.

Hi all, I know this isn't a lyme forum, but I know that many here have POTS as well as lyme, and wanted to get some input. My western blot came back today. It was positive for band 41 but not any other bands. The CDC criteria for a positive western blot is 2 positive bands, so my test was deemed negative. However I don't understand how I could have a positive band and still not have lyme. Can someone explain this to me? Also, have any of you had "negative" lyme tests and still had lyme? I'm not sure if I should still aggressively persue the lyme diagnosis or if I should look elsewhere for answers. I definitely have ALL the symptoms for lyme...many of which really only are seen in lyme and not in POTS (ie, chronic joint pain, numbness etc.) Thanks in advance for any advice/answers/thoughts! -Lauren

I'm sorry you're suffering so badly. Have you been to see an allergenist? Is it any particular herb that you react to? Is your reaction consistent with an allergic reaction (ie. flushing, hives etc.) or is it diffrerent? Sorry I have so many questions, it's just hard to tell exactly what's happening from your description. -Lauren

Some benefit from taking drugs that primarily lower heart rate, such as beta blockers, but for some their symptoms worsen. I'm one of the ones who does horribly on beta blockers. The meds that work for me are the ones that raise blood pressure, such as midodrine and mestinon. Both of these drugs raise my BP enough that my heart rate goes down on its own because I don't have as much blood pooling. Unfortunately the only way I know of to find out what meds will work is to try different ones and see how you feel. If you work with your doctor, through trial and error you may find a medication, or combination of meds that work for you. You may want to tell your doctor about your concerns. Perhaps you could try a vasoconstrictor first rather than a beta blocker first? I hope that helps! -Lauren

Often times when a person has low blood pressure, it's difficult to find a radial pulse (pulse on the wrist), in cases of severe hypotension, even finding the pulse in the neck can be difficult. If you have low blood pressure chronically, you may want to see if your blood volume is low, however there are many different causes for chronic hypotension. Many people with POTS have similar problems as you with finding pulses...it seems to be par for the course. Have you tried to see a POTS specialist?