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Does anyone know when the Florida Neuro-Immune clinic will start seeing new patients again?

Discussion in 'ME/CFS Doctors' started by Fuschia, Jun 4, 2013.

  1. Fuschia

    Fuschia

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    I rang today, I was told to check back periodically as Dr Rey is not taking new patients and she is fully booked for a year...I remember they were talking about training new doctors in. When I asked they said that there was no other doctor taking patients. Does anyone know what the story is? cheers
     
  2. SOC

    SOC Senior Member

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    You might try calling back and making it clear that you will go to either clinic. I'm a patient already, but when I called to change an appointment they screwed up, I was told I couldn't get an appt until next year. I asked if that was true at the Ft Lauderdale/Davie office also, and they said no and got me an appt in Aug. o_O If I hadn't asked about the other office, I wouldn't have an appt this year. :rolleyes:
    NOVA's scheduling still has a lot of problems, imo.

    I hadn't heard that Dr R is not taking new patients, but I'm not surprised, either. She is swamped. They are training new docs, but I haven't heard of any taking patients, yet.
     
    Valentijn likes this.
  3. Fuschia

    Fuschia

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    Thanks a mil. I actually first rang sometime in Spring, Dr Rey was still taking patients then but I was hoping just for a Skype appointment at first (which they can't do for the initial) because I didn't want to spend on air fares, etc, doh! I rang Davie and they said the situation was the same as for Kendall. The line was bad though so I'll ring again and say I'll take an appointment at either place. It seems you have to pester them. I wonder is there any clinic affiliated with them or is it literally just Dr Rey operating at the moment? I'm anxious to get an appointment soon!
     
  4. SOC

    SOC Senior Member

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    I think it's just Dr Rey at the moment. Dr Klimas has been doing mostly administration during the start-up of the Neuroimmune Institute, although she may be seeing a few patients.

    If it's any consolation, I've seen at least 2 different docs (residents?) for part of my appts in the past year, so they definitely have some new docs in training.

    It's getting harder and harder to see a good specialist. They're getting so booked up that they have years-long waiting lists. I think Dr Lerner is still taking patients, but he's only economically feasible if you live nearby because he wants to see patients face-to-face every 4-6 weeks.
     
    Fuschia likes this.
  5. acer2000

    acer2000 Senior Member

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    Didn't they just open this new clinic a couple months ago so they could take on patients? Now they aren't taking any? Thats not so good.
     
  6. SOC

    SOC Senior Member

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    They need to train the new docs. That will take some time. Drs Klimas and Rey are currently swamped -- as are most of our top specialists. :(
     
  7. nettie

    nettie

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  8. nettie

    nettie

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    Soc,
    Could you tell me what to expect when I go. I have waited so long that I just want to function and have energy again. I all started ldn and getting my viral load down. But thyroid and Adrenals are a issue. I Will bring labs with me will they start testing I would love to try the NK booster shot I heard about. Thank you for any info. Totally grateful……..
     
  9. SOC

    SOC Senior Member

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    You'll fill out a LOT of paperwork (hopefully in advance) about symptoms and current meds. The doc will talk to you about all that, give you a few things to do, mostly supplements, that help most people with ME/CFS. You may get some info about behavioral techniques that might help in terms of rest and push/crash cycle.

    The doc will order tons of labs based on your history and their experience. Those labs will almost certainly include the infections common in people with ME/CFS, thyroid, kidney and liver function (if you haven't had them recently), and immune tests. Others will depend on your history. They'll take lots of blood, so go well hydrated and bring water or electrolyte drink with you.

    Some people get exercise testing and some don't. If you're coming from far away and you want the testing, you might call and ask if you can schedule it while you're there.

    You'll probably walk out with some info to read and some lab requests for you to have done at home. What you probably won't get is new meds at the first visit. When the labs are all in, which will be a week or two for most tests (if you do them promptly when you get home) the doc will call you. At that point you make get part of a treatment plan and the prescriptions mailed to you. So, you aren't likely to have any new treatments for at least a month.

    The immune tests take 6-8 weeks, so you're not likely to get an immune treatment before that. They'll call you when the tests are back, but it's hard to wait.

    If you've not seen an ME/CFS specialist before, you'll think you've died and gone to heaven. ;) The doctors actually listen to you, know what you're talking about, take you seriously, and have concern for your well-being. I almost didn't know how to act with a doc who actually understands the illness, lol.
     
  10. avreed

    avreed

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    Don't know if this topic is still open for discussion but I just returned from Miami after seeing Dr. Rey. I have multiple infections of the GI tract, urinary tract with kidney/bladder impairment, menopausal hormone imbalance as well as severe adrenal/thyroid issues and a life long stress disorder that Dr. Klimas diagnosed as PTSD in 1996.

    After months of waiting for this day and terrible miscommunications of the part of the staff as to when and where my appointment was to be and a very long day traveling to Miami, I was told that the ONLY thing they treat is viral immune disorders. Not any other kind of infection, GI, UTI nor endocrine, nor neurological nor stress disorders.

    Dr. Rey wrote a list of specialists out on a piece of paper which included an endocrinologist, gastroenterologist, nephrologist and neurologist and told me I would have to consult with all of them to be treated for my various issues. She said the endocrinologist would "kick me out of his office" if I mentioned adrenal insufficiency despite having blood labs showing virtually no electrolyte function and ADH.

    Exhausted and disheartened, I struggled home in tears. This has been such a long, tortuous road and I really thought the Neuro Immune INstitute was my ticket to being treated without the revolving door of endless specialists who have not been able to help in 5 years - they all keep referring me to yet another specialist and I wind up back where I started.

    So if you are expecting to get anything more than immune panels done (they did do that), you may want to look elsewhere for more comprehensive care. Also, they offer absolutely no holistic treatment so again, if you are interested in a functional medicine approach which encompasses mind/body medicine, you will not find it here. I believe they are dedicated in their research but fall very short in their ability to treat the whole person.
     
    Last edited by a moderator: May 7, 2014
  11. SOC

    SOC Senior Member

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    Yes, INIM treats neuroimmune illnesses like ME, not menopausal hormone imbalances, UTIs, and stress disorders. That doesn't mean they don't treat the various symptoms of ME. Perhaps that's what she was trying to tell you?

    Dr R has given me referrals to local endocrinologists and cardiologists for conditions that could be treated appropriately locally. I don't think that's necessarily a bad thing as long as the local specialist can treat the condition/symptoms appropriately.

    I suggest that Dr R meant that you shouldn't use the phrase "adrenal insufficiency" to the endocrinologist. It's a red flag phrase for conventional medicine endocrinologists that makes them think you're a hypochondriac/kook -- fair or not. I don't think she meant that you don't have a problem with no electrolyte function and ADH, just don't tell the endocrinologist what you think you have. Let him/her make the diagnosis based on your labs. Doctors can be touchy about what they consider self-diagnosis.

    How disappointing! Had you already seen the specialists she referred you to? Did you tell her you had and got no satisfaction from them? It all sounds very frustrating. :(

    It's absolutely true that INIM is not doing mind/body medicine, so it's important for potential patients be be aware of that before they go. INIM is definitely more conventional medicine, although they use some supplements when necessary.

    They do not do ONLY immune panels. They test for a number of pathogens as well. They also ordered thyroid, cortisol, B12, and Mg tests (and others I can't remember) for us. Perhaps you didn't get those because you'd already had them?

    Is it possible Dr Rey was telling you that you don't have ME (which would be a very good thing)? Or do you think she was saying they only treat ME which has viral/immune aspects? It is true that they are not GPs, and so don't treat non-ME issues like menopausal hormone imbalances, kidney impairment, stress disorders, UTIs, or non-ME neurological conditions.

    Sounds like INIM wasn't a good match for you. :( I hope you have better luck elsewhere.
     
    Last edited: May 7, 2014
    Valentijn likes this.
  12. avreed

    avreed

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    Thanks for your edit and reply. I have seen multiple specialists, although not the particular ones she recommended as I do not live in Miami and was not helped by any of them. I do have a severe immune deficiency as documented by my local immunologist as CVID which I had received IVIG for in the past. Now with declining kidney function I can no longer tolerate that therapy.

    The infections run the gamut to to the above immune deficiency, and certainly include, but are not limited to viruses.

    Dr. Rey did not order further testing for nutritional deficiencies nor any endocrine function such as adrenal of thyroid. My adrenal status was quite clearly depressed from the labs I already had as were markers for anemia and more.

    Before making the appointment, I asked the receptionist to outline what in fact the institute treated and asked specifically about infections of the GI tract and elsewhere. I stated in brief what I was dealing with. They repeatedly told me I had to become a patient before they could discuss anything at all re: treatment. So I went in hopes that they could help me where no one else had.

    As CFS is often diagnosed as a matter of exclusion and many times DOES have an underlying illness or infection (Kenny de Meirleir and others have found this) which doctors have missed and certainly includes stress disorders of varying sorts, I was very disappointed by their single track response.

    This is a complicated illness which overlaps in all areas of the neuro/endocrine/immune spectrum and I don't believe it can be parceled out into a one trick pony diagnosis. So in light of that, I found their approach and lack of up front, full disclosure treatment protocols to be incomplete and misleading. Also that they dismiss the mind/body connection despite decades of pertinent research corroborating the implications of these effects, is somewhat mystifying at best.

    I do sincerely hope that others may benefit from the institute's research. This response was simply one person's experience and does not necessarily reflect on anyone else's experience.

    Best wishes to all and best of luck in your continuing journey to health.
     
  13. SOC

    SOC Senior Member

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    Did she recommend specific specialists in the Miami area? Are they specialists at NOVA who have been trained about ME/CFS? If so, that would be wonderful for people who are close enough to see them. Imagine, an endocrinologist and a cardiologist who actually know how to treat ME/CFS patients!

    Wow, that stinks. It's not possible to do a lot of medical treatments when your kidney function is poor. :(

    Maybe you'll be able to get treatment for those infections. That could give you a big improvement in your condition.

    No, she does not do nutritional testing. The referral to the endocrinologist was so that you can get tested and evaluated for adrenal and thyroid issues.

    My guess is that they treat what we more commonly call ME, rather than CFS. That might be what she meant when she said they "ONLY treat viral immune disorders".
    It is certainly true that ME/CFS is a complex neuro/endocrine/immune illness. I don't agree, based on my experience, that INIM is a one trick pony. And I don't think diagnosing ME according to the CCC or ICC is a "one trick pony diagnosis".

    That said, I can see how INIM is not a good match for every CFS patient. It has been great for my daughter and I, but we had the classic very sudden onset viral illness and clearly fit the viral/immune model.

    Future potential patients can learn from your experience. I advise anyone hoping to see one of the top specialists to do research here at PR where there are a lot of patient reports (like @avreed's here) about experiences with different specialists. It's clear from reading patient reports about INIM that they are a conventional medicine practice and do not do mind/body treatments.

    The same to you. :) I hope you soon find a doctor more in tune with your health needs
     
    Valentijn likes this.
  14. SOC

    SOC Senior Member

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    A local acquaintance of mine just got both her sons on the INIM waiting list with no problems in her first call to INIM. We'll see if there are any problems when she gets a call-back to make an appointment.
     
    Last edited: May 15, 2014
    Valentijn likes this.

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