Good doctor in the US? (SE preferred)

[WantToGetWell]

I'm looking for a doctor and / or somewhere I can get testing done that's relevant to ME specifically and / or CFS generally.

While my location is in the Mid-South / SE US, travel elsewhere may be possible.

My first priority is nailing down what specifically is going on. Is it ME? The more we know about what's going on, the better we can figure out what might help.

Any ideas or advice?

 

[FiliaLumen]

@WantToGetWell

I have ideas, but not advice! I live in the DC area, where we have nothing. I have been "eyeing" the following two places, but don't have the energy to travel South to them. Perhaps you would like to check them out if you are able.
1)
The Institute for Neuro-Immune Medicine at Nova Southeastern University
Located in Miami, FL and Ft. Lauderdale, FL
Dr. Allison Bested, Dr. Nancy Klimas, and Dr. Irma Rey

2)
The Hunter-Hopkins Center
Located in Charlotte, NC
Dr. Vincent Hillman and Dr. Charles Lapp

If money and energy weren't issues, I myself would give the Florida one a shot, as they are plugged into academic research.

 

[rel8ted]

2)
The Hunter-Hopkins Center
Located in Charlotte, NC
Dr. Vincent Hillman and Dr. Charles Lapp

Dr, Lapp is at least partially retired. Dr. Black is also practicing there. If you want a doc with a very strong belief in functional medicine, she is the one for you.

 

[FiliaLumen]

@rel8ted As of this past October, Dr. Black has retired for family reasons and Dr. Lapp has returned. https://drlapp.com/category/news/

 

[WantToGetWell]

@WantToGetWell

I have ideas, but not advice! I live in the DC area, where we have nothing. I have been "eyeing" the following two places, but don't have the energy to travel South to them. Perhaps you would like to check them out if you are able.
1)
The Institute for Neuro-Immune Medicine at Nova Southeastern University
Located in Miami, FL and Ft. Lauderdale, FL
Dr. Allison Bested, Dr. Nancy Klimas, and Dr. Irma Rey

2)
The Hunter-Hopkins Center
Located in Charlotte, NC
Dr. Vincent Hillman and Dr. Charles Lapp

If money and energy weren't issues, I myself would give the Florida one a shot, as they are plugged into academic research.

@FiliaLumen, can you give me some insight into how much they cost, especially Nova? Is there any other helpful information you can share?

 

[ebethc]

Has anyone on this board been to Lucinda Bateman? (Bateman Horne Center) I've always been surprised that there aren't more comments on her and also on Dr Nancy Klimas (I'm talking about first person accounts... ppl who've been patients of these docs)

 

[WantToGetWell]

Nova and Hunter-Hopkins both aren't taking any new patients right now. Hunter-Hopkins may do so next year.

This is very disappointing.

 

[geekbread]

Nova and Hunter-Hopkins both aren't taking any new patients right now.

I would love to know if anyone has any more info on Nova not taking patients? Is it indefinitely or because of COVID?

 

[Anncomingtogrips]

With Hunter-Hopkins, I reached out last July and got an appointment for this May. With that delay, I'm not surprised that they aren't taking new patients.
I'm seeing Dr. Susan Levine in New York and am traveling from North Carolina to NY next week for various diagnostics. She was great in running a full battery of lab tests.

 

[Stretched]

With Hunter-Hopkins, I reached out last July and got an appointment for this May. With that delay, I'm not surprised that they aren't taking new patients.
I'm seeing Dr. Susan Levine in New York and am traveling from North Carolina to NY next week for various diagnostics. She was great in running a full battery of lab tests.

IMO, you’re lucky to have found Dr. Levine. I’ve followed most of the top docs as a very long term PWC, who has followed the research, trials and publications since the early 1990’s. Hunter-Hopkins has been controversial, with less than optimal first hand reports. FWIW, Dr. Bateman is also a top clinical physician, in addition to conducting numerous trials... . I wish there were some good or even knowledgeable ME docs in Atlanta, GA.
If anyone knows of or has had good experience in that regard please post.

 

[jamie13]

With Hunter-Hopkins, I reached out last July and got an appointment for this May. With that delay, I'm not surprised that they aren't taking new patients.
I'm seeing Dr. Susan Levine in New York and am traveling from North Carolina to NY next week for various diagnostics. She was great in running a full battery of lab tests.

How is it going with her?

 

[Shanti1]

@geekbread @WantToGetWell
I have an appointment with Dr. Bested on Tuesday at Nova as a new patient. I made the appointment about 6 weeks ago. When did you last check for an opening? Nova does not take insurance for the visit. $350 and they told me the visit would be at least 3 hours long.

Prior to that I saw a Dr. Dantini in Palm Coast, Fl. I wouldn't say he is an expert in ME/CFS, but he does believe that ME and Fibromyalgia are caused by viruses, having had fibro and treated himself with antivirals. I went in with EBV, CMV, parvo, and HHV6 labs already done (and the labs showing that everything else had been ruled out) and he gave me the antiviral RX that same visit along with a prescription for LDN. He wrote a book https://www.amazon.com/New-Fibromyalgia-Remedy-Anti-Viral-Regimen/dp/1886039844, which is how I found him.

 

[jamie13]

@geekbread @WantToGetWell
I have an appointment with Dr. Bested on Tuesday at Nova as a new patient. I made the appointment about 6 weeks ago. When did you last check for an opening? Nova does not take insurance for the visit. $350 and they told me the visit would be at least 3 hours long.

Prior to that I saw a Dr. Dantini in Palm Coast, Fl. I wouldn't say he is an expert in ME/CFS, but he does believe that ME and Fibromyalgia are caused by viruses, having had fibro and treated himself with antivirals. I went in with EBV, CMV, parvo, and HHV6 labs already done (and the labs showing that everything else had been ruled out) and he gave me the antiviral RX that same visit along with a prescription for LDN. He wrote a book https://www.amazon.com/New-Fibromyalgia-Remedy-Anti-Viral-Regimen/dp/1886039844, which is how I found him.

please let us know how your appointment goes. Good luck.

 

[Judee]

I have an appointment with Dr. Bested on Tuesday at Nova as a new patient. I made the appointment about 6 weeks ago. When did you last check for an opening? Nova does not take insurance for the visit. $350 and they told me the visit would be at least 3 hours long.

Were you able to do this appointment?

I'm seeing Dr. Susan Levine in New York and am traveling from North Carolina to NY next week for various diagnostics. She was great in running a full battery of lab tests.

Did your insurance cover the testing and any medications she prescribed? Also do you know if she does telehealth appointments?

 

[Shanti1]

Were you able to do this appointment?

Yes, I was. I saw Dr. Bested a few times, but got very little from the visits. I continued to go because she is good at documentation and did a NASA lean test, and I wanted a well documented diagnosis in case I ever need disability.

As far as therapy, she is mostly into teaching people how to pace. She did renew my antiviral prescription, but when I saw her last she told me that she was going to take me off the antiviral (Valacyclovir) so that I would know how sick I actually was because I was using it as a band aide . I told her that everything I do to function is a band aid and if she had the cure, I would gladly take that instead. She also told me she didn't want me to take droxidopa anymore because it would make me worse. I tried to explain that I couldn't stand up without it and was using it to maintain my blood pressure and not as a stimulant, but to no avail.

At that point I decided not to see her anymore, that and she wouldn't ware a mask because she thinks they do more harm than good . I ended up transferring my care to Dr. Miguel Trevino in Tampa, Fl. He is not so familiar with ME/CFS, but specializes in POTS/OI and other dysautonomias. He is the one who prescribed the droxidopa and I have been very happy with him. He does telemedicine, but is out of pocket.

 

[Judee]

As far as therapy, she is mostly into teaching people how to pace. She did renew my antiviral prescription, but when I saw her last she told me that she was going to take me off the antiviral (Valacyclovir) so that I would know how sick I actually was because I was using it as a band aide . I told her that everything I do to function is a band aid and if she had the cure, I would gladly take that instead. She also told me she didn't want me to take droxidopa anymore because it would make me worse. I tried to explain that I couldn't stand up without it and was using it to maintain my blood pressure and not as a stimulant, but to no avail.

Wow. Sounds like she doesn't really "get" this disease. Yikes. Not good.

He is not so familiar with ME/CFS, but specializes in POTS/OI and other dysautonomias. He is the one who prescribed the droxidopa and I have been very happy with him. He does telemedicine, but is out of pocket.

Is he helping you get the antivirals as well?

Thanks for the feedback.

 

[Shanti1]

Is he helping you get the antivirals as well?

I haven't asked him yet. I have enough to last me through march. I'm not sure if he will continue that prescription or not since he isn't accustomed to prescribing antivirals. If I need to, I could go back to Dr. Dantini for a renewal, but at some point, seeing these docs out-of-pocket is more expensive than buying the med myself overseas.