I was surprised at all the POTS patients on this site, that was what prompted me to get tested. I also see a Doc at the Cleveland Clinc, a Dr. F, she's very knowledgeable at diagnosis and testing of POTS, I go to a Dr in Toledo, OH for treatment, he is the topmost authority on POTS in the USA, His name is Dr. Blair Grubb, and he wouldn't mind his name being used so I am not worried about using it here. A good site is dinet.org there is a good forum for patients and you'd feel right at home. I know the Dr I see at cleveland CLinic loves to diagnos but doesn't usually see the patients she tests long term, she is more into testing which she is the BEST in her field at. If you run into this problem dinet.org is a good place to find another Dr. to see. There are a few very good ones scatered thoughout the US. I am fairly new to the LYME to, only on my 4 th month of treatment and still very scared at the prospect of months or years of treatment.
Yikes
Posts: 33 | From OH | Registered: Feb 2006
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Hello again, I also see DR. F, at the Cleveland Clinic. The only bad thing is her follow up seem too take so long, as I live in Iowa it all over the phone now. Last time I saw her was oct 05. My doctor is working on my referal right now to dr. G. The bad thing we are looking at March of 07, before you can bee seen. I know he is that good, but I really don't want to wait that long.
As for Dinet, I love it. ( Who knows we may have talked there before) I been on the forum there for over year now. It due to everyone there I found this site for more info on Lymes. It nice how will everyone is to help.
I am praying that the test comes back postive, bad thing my doctor is like I trust this test, and there no reason to do treatment if it is showing no lyems. So the LDA sent me the western blot test to sent to CA, I got to get him to draw it though if the frist test comes back negitive. I am hoping the doctor office will call so for the LLMD in CO. As I think at this point it my best opiotn as I have 3/4 of the lymes symtoms, and I been sick fo rso long. I don't to wait any more. I been thought so many test but never lymes. I should be getting my first test result back today, keep you fingures crossed!
Posts: 51 | From Des Moines, Iowa | Registered: Jul 2006
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Your best bet is to make an appointment with his nurse practitioner, Bev. She is very nice and I have seen her 2x already. The other good thing is that with Dr Grubb you can wait up to 5 hours even with an appointment to see him. With Bev I usually get called on within a half an hour or so. She will take her time with you and she can consult with him while you are there with anything to questionable. Also, there are always cancelation, that's how I got in for my first appt. I had to wait 6 months to see him, and I called allthe time and hit a cancelation only a month after trying. It's worth a try.
yikes
Posts: 33 | From OH | Registered: Feb 2006
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Yikes, That's for the info. I have just heard thing both ways about Bev. I know she must know alot being dr.G asst. but, For me to fly out there I think I may wait to see him. I am going to try the to call for cancelations. Hopfully I can get somthing sooner.
Thanks again! Posts: 51 | From Des Moines, Iowa | Registered: Jul 2006
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bettyg
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posted
up for lookingforhope since she has POTS & lyme..
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POTS stands for positional orthostatic tachycardia syndrome...a form of autonomic nervous system dysfunction that causes peoples heartrate to increase to inappropriately high rates accompanied by low blood pressure(not all POTS patients experience the low blood pressure aspect)when changing from a laying down to upright position.It's much more complex than this brief explanation.There is a great POTS site out there,I just can't remember the URL. Maybe someone out there does?
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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Yikes: I'm curious about your situation and sent you a private message, so if you have any ideas that would be greatly appreciated.
Posts: 2 | From ohio | Registered: Jul 2006
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