dysautonomia

[rowingmom]

Found this on the LymeMD blog a couple of days ago. I don't know if it would be helpful in your situation, he is obviously referring to bacterially induced POTS.

 

http://lymemd.blogspot.ca/2012/04/pots.html

Edited April 30, 2012 by rowingmom

[philamom]

Julie- so sorry to hear what your daughter is going through! Did they do the tilt testing while in the hospital or did you end up seeing a Cardiologist? I'm starting to think my daughter is dealing with some sort of dysautonomia (not as disabling). She is also homebound with severe nausea, GI issues, headaches, dizziness, gerd, trouble breathing at times, thirst, and temperature regulation problems.

My daughter's dysautonomia like symptoms have resolved (for the most part) since being put back on antibiotics for lyme disease. We had an appt. scheduled with a cardiologist who specializes in dysautonomia/POTS, that we were able to cancel.

Edited April 30, 2012 by philamom

[sosudden]

I see this post is old - hopefully someone can help me with POTS?!?

DD 10 has been suffering from this since June (at least).

Hopefully starting Florinef.

Her heart rate can shoot up to 178!

Are there any other tests I should be asking for?

Once again I feel like I have to research and ask for any testing and treatment and I just don't want to miss anything.

Any good/bad Florinef issues? It is a steroid and DD FREAKED OUT on prednisone and could not take so....

Thanks!

[tpotter]

All the symptoms you are describing can be symptoms of lyme, bartonella, and other co-infections.

[kos_mom]

Two years ago DD was evaluated for POTS but she didn't fail the tilt table test so it was ruled. Does failure to fail the tilt table test rule out dysautonomia as well?

[mompaisley]

Yes, Dr. T says there is a connection between EDS, POTS and PANDAS. I have Hypermobile, my hubby and son have Classical. My daughter has PANS. Would love to see Dr. T figure this all out. What a mystery!!!