I just had a quick question. I am having major issues with sweating. Now, I know you are thinking 'ding ding ding, that's Babs!" I actually don't think it is Babesia at all.
It isn't drenching night sweats. It is just very exaggerated axillary and palmar sweating. I have to change shirts throughout the day and try to camouflage it as best I can. I sweat through layers of clothes. It's ridiculous.
I am using clinical strength deodorant, and it isn't touching it. It is significantly impacting my daily life at this point. I even am getting dehydrated from it.
I have dysautonomia, so I feel like that could be the culprit. I am no where near the age of menopause, my thyroid levels are 'fine,' my hormones look 'fine,'even though I haven't had a menstrual cycle in several months.
I don't think it is Babesia because all of my Babs symptoms I used to have are gone. I have no more air hunger or cough. I now test negative through the good labs. I know there are multiple strands, but I really don't think it is the issue.
Any suggestions? Advice? I've looked into Botox shots, but they aren't covered by my insurance for this problem.
Thanks!
Posted by lax mom (Member # 38743) on :
Mine is caused by Dysautonomia. Are you being treated for that? If so, maybe your treatment needs to be adjusted.
Posted by Life+Lyme (Member # 33568) on :
Hey lax mom,
I have been trying to get my Dysautonomia under control for YEARS, but I've been unsuccessful. What has worked best for you?
Posted by lax mom (Member # 38743) on :
Hmmm, Florinef, Propranolol, Clonidine and then Desmopressin made me feel worse.
Toprol XL is helping slightly. I keep neding dosage increases though.
I'm supposed to start Midodrine, but am still too scared to take it.
Using Jobst Thigh highs and an abdominal binder, along with sugar free Powerade Zero helps.
I want to try IV saline but can't get a Dr to RX it.
I wish I could get referred to Vanderbilt's Autonomic Dysfunction Center.
It's not an easy feat to get this under control. I have my LLMD, Neurologist and Cardiologist all working on it and not making much progress.
BTW, I love your signature! Posted by Life+Lyme (Member # 33568) on :
Well, thank ya!
I've been taking Florinef, but I haven't had much relief from it. I am severely allergic to Midrodine...I'm surprised everything turned out ok.
My ADH is low, so I was taking Desmopressin for a while, but I couldn't say it was beneficial.
I have tachycardia, really low BP (almost pass out all day every day), stomach motility issues, etc that I can all link back to dysautonomia.
I've done IV saline on and off for years. I guess it is good when things get really bad--at least in terms of low BP. I also inhale those Powerade Zeros, too funny!
Funny that you should mention the Vandy clinic. I have been really looking into it the past couple of weeks. It is in my backyard, relatively speaking. Do you not think your LLMD would refer you?
I also looked at the research study, and it looks mighty tempting. All of that free healthcare sure does seem great.
My only concern with the clinic as a whole is their view on Lyme. It makes me nervous that they would try to throw steroids at me. Also, we all know that Lyme caused our dysautonomia, but I doubt they will acknowledge that.
It's just tricky trying to figure out what to say/not to say. If you have a port, there aren't many secrets you can keep haha.
Posted by lax mom (Member # 38743) on :
I just emailed a request to be referred to the Vandy clinic. Fingers crossed.
What type of Dr RX'd IV saline? I just know I need that, but have asked and have been dismissed.
Posted by Life+Lyme (Member # 33568) on :
I'm going to pm you...
Posted by seibertneurolyme (Member # 6416) on :
I found a post I made several years ago and brought it back to the top again.
Hope the post is helpful.
Bea Seibert
Posted by Life+Lyme (Member # 33568) on :
Thanks, Bea!!
You always have great advice, I'll check it out:)
Posted by Keebler (Member # 12673) on :
- LL Bean 100% cotton shirts also very helpful. I can't handle even 1% synthetic fabric in anything near my skin. -
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