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My visit with Dr. Black at Hunter-Hopkins

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Hi everyone- I had asked a question earlier about anyone's experience with Hunter-Hopkins in Charlotte.

Well, I had an appointment yesterday and I cannot recommend Dr. Laura Black and team enough. She is so incredibly knowledgeable and compassionate. (She also has a great sense of humor which is nice when dealing with this incredibly depressing illness!)

I WISH I HAD KNOWN ABOUT THIS PLACE YRS AGO.

It was an extremely thorough visit (cognitive testing on a computer, tilt-table, VO2, anaerobic threshold testing on a bike, 10 vials of blood drawn/sent out).

I've been sick on/off for several years; have seen probably close to 20 doctors for different symptoms (and I work at a medical university!) and this is the first time I feel like someone had a CLUE. She knows everything surrounding this illness and all of the components (I have orthostatic intolerance and had no idea), is up on all of the latest research. If you can financially swing a visit here (they do not accept insurance but prepared all of the paperwork for me to submit), please call them immediately to get on their waitlist!!
 

Diwi9

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@PHI413 - Thanks for sharing this information. It's really nice that this center provides so much diagnostic testing. Did your initial visit come as a package with all that testing, or did you have options on which tests you took? Also, if you don't mind sharing, how much does the initial visit with all the diagnostics cost?
 
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Hi Diwi9, everything was included with the visit with the exception of the tilt-table test and the VO2 and exercise bike to find out AT. Those 2 tests are done in the afternoon after the cognitive test and meeting with the dr, and are performed upon recommendation by the dr. The total visit was $3K. I believe it would have been closer to $1500 without those 2 tests. There is a $350 deposit when you call to join the wait list that is applied to your visit. I hope this helps. I know it is a lot but if I had started out here, it would have actually saved me $$ over the years!!
 

Diwi9

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@PHI413 - I think those prices are comparable. I have not had some of those diagnostics properly performed and the results can really help anyone applying for SSDI, so wish I had access to them through my specialist. It's a real service that they have it in-house at Hunter-Hopkins. I've spent more out-of-pocket on diagnostic blood work alone. Thanks again for sharing, it's good to learn about the facility and a "new" clinician in the field.
 

rel8ted

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@PHI413 - Thanks for sharing this information. It's really nice that this center provides so much diagnostic testing. Did your initial visit come as a package with all that testing, or did you have options on which tests you took? Also, if you don't mind sharing, how much does the initial visit with all the diagnostics cost?
You have options,it's pretty much tailored. Office visit billing is $4xx/hr and exercise/ tilt table is additional. They are not putting every patient through exercising testing.For instance, I am not well enough to tolerate that. Tilt table is only performed when indicated. My first visit was about $16xx.

Keep in mind,visits are billed by time in the office. Stay and chat, but it's on your dime.

Antivirals are an absolute last resort in this practice. I'm not saying that's bad, just that they are cautious. She is probably the ONLY compassionate doc I have seen in the last 8-10 years.
 

Dan_USAAZ

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Interesting bit of trivia.... Hunter-Hopkins gets part of it's name from a CFS patient that died (see story below). Due to the CFS diagnosis, her condition was ignored, including additional and worsening symptoms. She died of a grand mal seizure.




"Allison Hunter was diagnosed with Chronic Fatigue Syndrome, but lived in Australia, where the providers of socialized medicine ‘did not believe’ in the diagnosis. As a result she was misnamed a malingerer, hysterical, or Munchhausen – a term reserved for individuals who purposely pretend to be sick. When Alli developed convulsions they were attributed to this ‘phantom illness’ and went untreated. As a result, she died during a grand mal seizure. Lessons learned: (1) diligently look into all complaints and don’t discount them, and (2) don’t trust socialized medicine.

Allison’s parents went on to found the Allison Hunter Memorial Foundation, which has promoted CFS throughout the Pacific Basin and provides superb seminars for practitioners to learn more about CFS and FM."

p.s. while I referred to this as trivia, it is by no means trivial!
 

RYO

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You have options,it's pretty much tailored. Office visit billing is $4xx/hr and exercise/ tilt table is additional. They are not putting every patient through exercising testing.For instance, I am not well enough to tolerate that. Tilt table is only performed when indicated. My first visit was about $16xx.

Keep in mind,visits are billed by time in the office. Stay and chat, but it's on your dime.

Antivirals are an absolute last resort in this practice. I'm not saying that's bad, just that they are cautious. She is probably the ONLY compassionate doc I have seen in the last 8-10 years.
Are you able to elaborate as to the treatment options made available through the Hunter-Hopkins Clinic?

Are they still offering Ampligen?
 
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Hi RYO and Pink:

Answers below!

RYO: Ampligen was not mentioned to me as a treatment so I don't know if it's still offered; I am still waiting on the bloodwork to come back, but I'll keep you posted if it is prescribed. As for my treatment, I am ordered to 6-8 weeks off of work. I have never paced before, my heart rate monitor and strap arrive tomorrow so that will be new for me. I have POTS as well, which I had never heard of, so I am very hopeful the pacing will make a difference. Since I exceed my AT just by standing up, she prescribed a beta blocker to lower my heart rate, just started that yesterday. I will be adding magnesium to my vast supplement list. I will be eating between 8am-5pm 80% of the time, which is no sweat for me since I go to bed so early anyway. I eat well, but will be reducing my (already pretty low) sugar intake. I have made an app't with a therapist to discuss my new normal...I've been incredibly active, I'm a single mom who works full time and used to a lot of responsibility...that has changed for now. I'm having a hard time dealing with feeling of letting others down. I am a highly-strung person and truly need to make relaxing and processing stress in a healthy way the highest priority.

Pink: I cannot say enough about Dr. Black's willingness to listen, hear my entire medical history (she actually went all the way to the day I was born and asked how my delivery was, if I was breastfed, etc..), and explained things very well...maybe 3-4 hours worth. Also, I emailed her the next day with a set of new questions and her nurse called me back within 24 hours with very specific answers. Was I kept waiting at the office a long a time? Not at all. They were ready and waiting when I walked in the doors, and I am always early. Everything and everyone was exceedingly organized, it is a tightly run ship.

I hope this helps! :)
 
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rel8ted

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I saw a new primary yesterday bc I needed someone to coordinate care bc I now have multiple out of state specialists, he was SO impressed with the notes that I sent him from my visits with her. He kept raving about how thorough they are. HE asked a bunch of questions about her and the clinic bc he does not believe that CFS is psychosomatic or that we should be prescribed SSRIs. It was like he was in disbelief that there is actually a practice that treat CFS!
 
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Yes, they still treat with Ampligen. But it costs about $60k/yr and you would have to move to Charlotte to go for infusions several times per week. Also Dr. Lapp is seeing patients part time. I think it is a fabulous place if you can afford it. I have an appointment with Dr. Black in June.
 

RYO

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60 k is pretty steep not considering living expenses in Charlotte . Do I consider taking vs putting my sons through college?

Perhaps organization such as SolveMECFS or even NIH will consider funding a treatment study.
 
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I ended up cancelling my appointment with Dr. Black owing to price. Dr. Lapp, the dear man that he is, said that I was in good hands with NOVA... he said "trust me." He said that his practice is more personal and if I did not like NOVA that I could come to his practice. Since NOVA gave me a partial scholarship it was far more affordable. And I think Dr. Rey is excellent.

I also recently went to the Cleveland Clinic functional medicine group and consulted with Dr. Alice Prescott. A patient told me that she helped him a great deal. Dr. Prescott believes that I have MCAS mast cell activation syndrome, which I also have suspected but neither my hematologist or allergist locally are familiar with it. So I kind of forgot about it and was pleasantly surprised when Dr. Prescott brought it up. Also within the functional medicine group, I have an RD who put me on an elimination diet, and I have a health coach who is an RD.

The Cleveland Clinic Functional Medicine Group takes insurance!!!! I have not found a single FMD who does, so yeah for me! After the initial visit in person you can do Skype-like virtual visits. These are generally not covered by insurance but they certainly are convenient. The health coach is FREE and I Skype with her once a week!
 
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Dr. Lapp, the dear man that he is, said that I was in good hands with NOVA... he said "trust me." He said that his practice is more personal and if I did not like NOVA that I could come to his practice. Since NOVA gave me a partial scholarship it was far more affordable. And I think Dr. Rey is excellent.
What is NOVA?