posted
HI everyone....for the people here who have been diagnosed with POTS, do you find that it makes you feel breathless quite easily, sometimes even just from standing up quickly?
I am getting this a lot lately and it is really disconcerting. Thanks. Jess
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
posted
Yes, it certainly did for me when it was a bigger problem, it's better at the moment. I hope you can start something soon that will bring you some relief.
It's important to help your body when you have automomic dysfunction. Per my LLMD, one can have an incomplete response to abx when the body has this issue going on and it's not addressed.
I wish you could get in with a top LLMD...have you thought of having another doc review your case? I believe I know who you see, and I went there way back when and I'm glad I left. I hope you don't take offense to this, but I don't feel he's a good fit, esp for a complex case like yours. I know you like him, it's up to you, just a thought.
I wish you the best.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
| IP: Logged |
posted
My mother in law has had Potts for 23 years. She has what you describe.
My cousin has had Potts for 16 years. She can get really sick. Everything from passing out to diarrhea. She is on a new medicine that Vanderbilt is trying out on her. So far it is really helping!!
Posts: 415 | From USA | Registered: Jun 2012
| IP: Logged |
posted
Dizziness, breathlessness, almost passing out, increased pain, horrible brain fog, etc. etc... I haven't officially been diagnosed yet but for about 8 years I was not able to be vertical and was bed-bound.
Seeing a fabulous neuro (a distance from me unfortunately) and will post after seeing them. You're not alone in this and I think if we don't get this under control we may be missing a big piece of the puzzle! I truly believe that getting a handle on this will help us with our quality of life!
Posts: 394 | From Southeast | Registered: Oct 2012
| IP: Logged |
posted
Is POTS a commonly found syndrome in Lyme sufferers? Are we more prone to it if we have POTS, are they independent things, or does the Lyme mess with the autonomic nervous system and cause it?
I think I might be suffering from something similar myself. All the symptoms you describe, Jess. Constantly breathlessness when even thinking hard. Heart rate goes from 70-108 when standing! The cardiologist told me to eat more salt.
Posts: 36 | From Connecticut | Registered: Jun 2012
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic