posted
I guess it has been a year of treatment, and I am currently on IV abx. And while the last year was one huge herx from hell, I have seen various symptoms improve: head pressure, swelling, joint pain, hair is getting thicker, cognitive function better, feeling in my fingers returned.
I am encouraged by the improvement. But there are a couple symptoms that show no signs of improvement, and the one that sucks the most, is my inability to stand. My pulse goes up to 145 standing, walking and standing makes me sweat excessively, and I have tons of bruises from falling after getting up. Wearing compression leggings and being in cold weather helps.
Has anyone had improvement? I did a search and couldn't find anybody saying this had gotten better.
This was my first "symptom" even though I didn't realize it at the time. I just thought I hated work. What infection usually causes this stuff? Lyme or Babesia? Or is there something else wrong with me?
Gambler
Posts: 243 | From chicago | Registered: Dec 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Gambler,
My ANS stuff got worse on abx. I found a doctor who specializes it, and I feel like it's getting better under his protocol.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've been on a medication protocol for NMH/POTS (depending on the day) since before I got my Lyme dx.
I found that my ANS symptoms have improved while I've been on abx. They are not gone, but I can now cook a meal without having to lie down before I eat it!
I still have to be careful not to stand for too long, or I become very fatigued. I also don't go shopping without my scooter or a store-provided electric cart, unless I know it will be a quick in and out with little waiting in line.
I also become overheated when I am standing too long. It's one of my first clues that I need to sit or lie down soon.
I've tried compression hose and they were too tight for me, so I just use regular support hose, when I wear a skirt or dress.
The rest of the time I make sure I have a foot rest available. I have a collapsible one I carry in my purse all the time, and little stools all over my house to help me out.
I hope this helps and that you see some improvement soon.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I say yes but it was one of the last things to heal. My ANS problems were helped by bicillin, zith, and mepron.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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posted
I am taking zith and malarone. And while my head and breathing are better, no effect on the ANS symptoms.
Maybe it is still just herxing away.
Thank you for the suggestions on how to cope. It is so odd when it is easier to climb stairs than to stand still. I don't cook food, I can't deal with standing for that long. Which means I eat a lot of carbs.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Abx have really helped with NMH, but it is actually Inderal LA that is holding my blood pressure up. Dr. B said he sees this a lot in lyme patients.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
Orthostatic tachycardia and hypotension were my first symptoms too. I've just started antibiotics so I can't give you much advice there, but I do have some tips for the OH:
1. I use a stool or rolling office chair in the kitchen so I can cook sitting down.
2. I use a chair in the shower...otherwise I'd pass out.
3. Midodrine and mestinon have really helped with the autonomic symptoms. They don't cure it, but they make it tolerable in the short term.
You may want to go to www.potsplace.com for some other tips if you haven't already.
I hope you start to feel better soon!
-Lauren
Posts: 22 | From Maryland | Registered: Dec 2006
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posted
Gambler - My resting heart rate was 160...I was bed ridden. But, to get it under control, I had to go on the beta blockers. I haven't been on the beta blockers now for several years. Once in a while I get a rapid heart beat or high/low blood pressure for a day but I think the antibiotics eventually helped. The beta blockers were crucial, however. I was on them for about 18 months. Today 'beta blocker free' my resting heart rate is about 70 is BP about 110/70. I was seeing a cardiologist to help with the heart problems.
Beta blockers were no picnic as they had to be adjusted and monitored closely.
These were my first symptoms as well in 1998 but didn't get diagnosed with Lyme until 2003 so I didn't start the antibiotics until 2003.
[ 15. January 2007, 07:59 PM: Message edited by: gopats ]
Posts: 298 | From Maine | Registered: Jan 2004
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posted
Thanks for the info., I had never been to potsplace.com, I learned a lot. I am hoping that it gets better with abx, since I rarely leave the house now, I am going to wait to take medication.
I am encouraged by your improvement gopats. Next year, I want to be able to stand in line to buy x-mas presents without feeling like I am about to pass out.
Posts: 243 | From chicago | Registered: Dec 2005
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posted
Gambler - I couldn't stand in line to by a loaf of bread back then. I'd talk to the doc about what they can do to help you get by. I'd talk to the doc about beta blockers. After my bed ridden stint - the doc wrote up Physical Therapy order. This would good because they monitored my heart rate with simple exercises and it helped me gain some strength back. For a while, every time I felt my pulse race, I thought it was happening again. So the physical therapy helped gain my confidence back as well.
Take care...Hope for a better 2007!
Posts: 298 | From Maine | Registered: Jan 2004
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I work out and feel really really terrible when I do it. I drip with sweat, get headaches, feel like puking, my neck hurts, and my arms are like sand bags, I get vertigo, and feel horrible for hours. But I keep doing it because my other option-atrophy- is less appealing.
Last night I did the dishes for like an hour, standing up. Pretty good.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
gambler,
what type of exercise are you doing? Dr. B highly recommends no cardio exercise when treating Lyme.
I found I couldn't handle cardio and just do yoga. I do vinyasa flow yoga, so it has some cardio but not intense.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Doc now (after 3 1/2 years in treatment) is recommending minor cardio for me. He recommended getting a rebounder.
My doc said no cardio because of the orthostatic problems. But on the other hand, I thought if you can handle the cardio, wouldn't that be good for lyme?
It must be on a case by case basis. Years ago, I would count my period of feeling good by minutes, I can now do so (usually by weeks). Not 100% but there is hope.
Posts: 298 | From Maine | Registered: Jan 2004
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posted
I don't do cardio really, I was walking 2 miles a day before I went on IV and I would feel horrible doing it, but I went on IV about 12 weeks ago and it hasn't been easy, and the walks diminished.
But the excercise I do is circuits, pilates, and strength. I have actually gained muscle this past year. I haven't been doing yoga because it feels wierd with my PICC line. Excercising makes me feel really badly, so I hope it is good for me.
My days are comprised only of doing things that make me feel like hell-- so that I can have a better future. I infuse three times a day, take orals, work out, figure out medical bills, go to the Dr, pharmacy, grocery store...I don't do anything else. And it all sucks. That is why I was looking for some hope. It is getting really hard to wake up early to infuse and start another day.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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posted
Mine just started when taking abx. I'm fairly new to this, but I used to workout and 2 days out this last month of treatment, I've had at least a little energy.
So, of course, I tried to do some light workout(just basic yoga really), and it killed me.
Good luck.
-------------------- Never walk through a cornfield backwards.
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