Might go to Dr. Klimas' office

[Sushi]

My BP tends to be all over the place. Some days it's high, some it's low. I'm not sure what to make of it, either. Next week I'm pulling everything together so that I can be very consistent on when I take my fluids, electrolytes, and medicines and see if I can get a more consistent BP.

I take my BP sitting upright after a few (or more) minutes rest. Does anyone take it differently -- standing, laying down, etc?

I'm still trying to sort out the HR/BP/POTS thing and how best to manage it. I suspect it may be the next big area where I can get a significant quality of life improvement.

I usually taking after sitting and resting for a while, then stand up, prop my arm on something heart level and take it again after, 1, 3, 5 minutes to get an idea of how much it is dropping.

Sushi

 

[Sushi]

I applaud your resurrection!

Thanks! Good to be back! (bowing)

(The old Lazarus routine )

 

[HTree]

HI Marg,
I thought Dr. K and Dr. R usually use Famvir. Did they give you a reason they chose Acyclovir? (I know Acyclovir is Dr. M'/stanford's antiviral of choice for EBV, so wondering what's best for this/why chosen...)
What are your viruses?
Thanks:0)

 

[Persimmon]

I've just waited up until midnight (local time) to ring the Klimas clinic, wanting to make an appointment.
After explaining I'd be coming from Australia to visit the clinic, I was told the following:
- They're not taking new patients;
- They don't know when they'll be taking new patients;
- They don't have any information about when the new clinical facilities in Davie / Ft Lauderdale will open;
- When they are taking new patients, it wouldn't be possible to make an appointment with Dr Klimas.
This was rather disappointing. It's a couple of years since I last felt well enough to contemplate traveling.
Any suggestions?

 

[maddietod]

Maybe the next person visiting the clinic could ask in person about new-patient appointments? Meanwhile, I have a question for them, and I'll see if I can get any information for you.

As to seeing Dr. Klimas, I'm so happy with Dr. Rey that I wouldn't want to switch.

Madie

 

[SOC]

I've just waited up until midnight (local time) to ring the Klimas clinic, wanting to make an appointment.
After explaining I'd be coming from Australia to visit the clinic, I was told the following:
- They're not taking new patients;
- They don't know when they'll be taking new patients;
- They don't have any information about when the new clinical facilities in Davie / Ft Lauderdale will open;
- When they are taking new patients, it wouldn't be possible to make an appointment with Dr Klimas.
This was rather disappointing. It's a couple of years since I last felt well enough to contemplate traveling.
Any suggestions?

Setting up the new clinic and training new docs has to be swamping Drs K and R. It's possible that they simply won't have time for any more new patients for a while. Sadly, some of our best ME/CFS docs have waiting lists from several months to a couple of years long.

Also, the new administrative end (missing Hannah ) is not always up to speed on what's going on. We've had several snafus during this transition time. So it's possible that you were misinformed about Dr K's group not taking new patients. Dr K has not been taking new patients since the NOVA Southeast Univ deal came through, but Dr Rey has taken some since then.

Last time I was at the office, Dr R was training a kind, gentle, and charming new doc who was about to "get his Boards" (is that the correct medical phrase?). I imagine when another new doc or two are in place, new patients will be able to get prompt appts. May have to wait 6-9 months (or more?), though.

 

[Marg]

Setting up the new clinic and training new docs has to be swamping Drs K and R. It's possible that they simply won't have time for any more new patients for a while. Sadly, some of our best ME/CFS docs have waiting lists from several months to a couple of years long.

Also, the new administrative end (missing Hannah ) is not always up to speed on what's going on. We've had several snafus during this transition time. So it's possible that you were misinformed about Dr K's group not taking new patients. Dr K has not been taking new patients since the NOVA Southeast Univ deal came through, but Dr Rey has taken some since then.

Last time I was at the office, Dr R was training a kind, gentle, and charming new doc who was about to "get his Boards" (is that the correct medical phrase?). I imagine when another new doc or two are in place, new patients will be able to get prompt appts. May have to wait 6-9 months (or more?), though.

 

[Marg]

Exactly SOC, they are in a huge transistion. It all takes time and Hannah leaving was really too bad. i don't know why but when I was there in May she was not her usual self. Friendly to us and had a bigger good-bye that usual. I wondered about that at the time. I loved that place. Finally, people that knew and cared.

I am suppose to hear from someone there soon, so if I can learn anything I will post.

M

 

[Persimmon]

Thanks to Madie, SOC and Marg for your replies - much appreciated

 

[maddietod]

Dr. Rey told me that Hannah moved to take care of her very sick mother in Pennsylvania. A new office manager took over on August 1st, but had to quit almost immediately to care for his father. Meanwhile, when they were funded by U of Miami, they got to use a very sophisticated and encrypted email system, so communication was easy. They lost that with the move to NOVA, so now they do everything by phone and fax, in an office that's using temporary managers.

Persimmon, when you called, did you reach an answering service at NOVA, or did you get through to the office?

 

[Persimmon]

Persimmon, when you called, did you reach an answering service at NOVA, or did you get through to the office?

I rang 305 595 4300.
The call went through a university answering service (automated) and was answered by someone who sounded like she manned a general university switchboard - she seemed disinterested - but she said that I had got through to the CFS clinic.

 

[Marg]

I rang 305 595 4300.
The call went through a university answering service (automated) and was answered by someone who sounded like she manned a general university switchboard - she seemed disinterested - but she said that I had got through to the CFS clinic.

The first calls yesterday were to some place "off site" so the answering person said. I had to tell my story to her and she told the Miami office. I was told Dr. K was in with a patient and she would give her the message. So she is still seeing people. I called again at end of their day and the message was out of the office.

Dr K did get the message and my prescription was at the drugstore this morning. I know Hannah called in things before so did not understand why it was not being done..one said it had not been autherized. It took all week and a lot of calls to get it done. I would tell the people and nothing would happen.

I think I said they said they did not receive the first two faxes with my tests. I did get Dr. Rey that time, she answered the phone. I sent the fax again and she called and said she got it. This was last week and she was leaving on Thursday and said Dr. Klimas would be there Monday. So it was another week but I got my script today. Yay, no more calling. LOL. I think they just do not have their ducks in a row yet and it is hard for new people at first. Hannah set up the office in the beginning or most of it anyway and got it up and running, so to lose someone like her would be tough.

I noticed the disinterest from one of them. The one the time the Miami office answered was on the ball. It will be better in time when the work out the kinks.

 

[November Girl]

I haven't finished this thread yet, but can someone tell me where to find the contact info? I also have a fuzzy question. I am ready to purchase a scooter as I have a real hard time walking very far - both the exertion and the POTS. Any guesses whether treatment w Dr K or R will obviate the need for scooter/wheel chair?

 

[Marg]

I haven't finished this thread yet, but can someone tell me where to find the contact info? I also have a fuzzy question. I am ready to purchase a scooter as I have a real hard time walking very far - both the exertion and the POTS. Any guesses whether treatment w Dr K or R will obviate the need for scooter/wheel chair?

The office is small, so if you have a car or cab to the office it is a short walk and the office on the first floor. If you get out by the door, just go inside and it is a short ways to the right .You will be sitting most of the time in the office.

The phone is 305.595.4300 , the email was www.cfsclinic.com There may be a new one with Nova, not sure. I had Hannah's, e-mail before but got a naswer that it was no longer working and a member of the staff would be in touch. That never happened so I started calling. The first calls were not answered by the office an "off site" answering service taking the calls. My husband tried and low and behold he got the Miami office so don't know what is up with that. Dr. Klimas did get the message and my prescription was called to my pharmacy. I am set now for a while. There was a site that told about how to make appointments, Maybe if you Google Dr. Nancy Klimas it will come up. I did not try that, think I will now.

 

[November Girl]

I take mine sitting with my feet up. It drops considerably if sitting with feet on the floor - I don't remember the details, and haven't kept a chart, but it was quite noticeable.

 

[Marg]

There is a lot written about the office but it is the same so any change has not taken place on the net. No mention of Nova, at least where I was looking.

 

[SOC]

I haven't finished this thread yet, but can someone tell me where to find the contact info? I also have a fuzzy question. I am ready to purchase a scooter as I have a real hard time walking very far - both the exertion and the POTS. Any guesses whether treatment w Dr K or R will obviate the need for scooter/wheel chair?

Probably not in a short time. Treating the POTS (if you haven't already) might make a big difference, though. Still, it all takes time. If the scooter improves your quality of life significantly, I'd go ahead and get one.

FWIW, in the times I've been able to use a scooter/chair, I've found the power chair to be much easier to get around in and less tiring to use. It's smaller and easier to maneuver, and you steer with a joystick at your hand so you don't have to sit as upright and steer with your arms.

 

[November Girl]

Thanks SOC. that makes so much sense. I think I was indulging in wishful thinking! My POTS is fairly well treated with all the electrolyte minerals I take. I still avoid standing still, and my blood pressure is lower when sitting with my feet on the floor than when reclined back with my feet up. A scooter would greatly enhance my quality of life.

Probably not in a short time. Treating the POTS (if you haven't already) might make a big difference, though. Still, it all takes time. If the scooter improves your quality of life significantly, I'd go ahead and get one..

I'm not sure what you mean by power chair and scooter. Some sites list the same machine as a scooter and a power chair. I'm leaning towards a Luggie, mostly because it appears to be the most practical for getting in and out of the car.

FWIW, in the times I've been able to use a scooter/chair, I've found the power chair to be much easier to get around in and less tiring to use. It's smaller and easier to maneuver, and you steer with a joystick at your hand so you don't have to sit as upright and steer with your arms.

 

[Valentijn]

I'm not sure what you mean by power chair and scooter. Some sites list the same machine as a scooter and a power chair. I'm leaning towards a Luggie, mostly because it appears to be the most practical for getting in and out of the car.

A power chair is a powered wheelchair. Usually needed by people that can't walk at all, and need it to maneuver around the house, etc. A scooter is a mobility scooter - 3 or 4 wheels, and used more for outdoors, shopping, etc.

 

[SOC]

T'm not sure what you mean by power chair and scooter. Some sites list the same machine as a scooter and a power chair. I'm leaning towards a Luggie, mostly because it appears to be the most practical for getting in and out of the car.

A Luggie is a scooter. A power chair is a powered wheelchair. Different people have different preferences. My preference is the power chair because it has a much smaller footprint, so it's easier to get around in stores or busy places. Also, a scooter requires me to sit very straight upright or even leaning forward to steer with a handlebar. I find I have a lot more time out and about (because of lower energy expenditure) with a power chair than a scooter. You can drive a power chair up to a restaurant table rather than have to find a place to park a scooter and walk to the table. For me, the power chair is less intrusive -- more like being a mobile person -- than a scooter, which always feels to me like I'm maneuvering a little vehicle. Overall, I find the smaller footprint and joystick control uses less energy than manhandling the larger scooter with it's handlebar controls.

Many, many people use scooters, though, and I'm sure they have reasons why they prefer it. It's probably best to try both, if you can.