Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Institute of Neuro Immune Medicine - Florida

Discussion in 'ME/CFS Doctors' started by Sherpa, Feb 17, 2015.

  1. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

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    Has anyone been to the clinic led by Dr. Kilmas in South Florida? I called a while back and heard Dr. Kilmas was not seeing patients. Has anyone been to the Nova University clinic and/or seen the other doctors there? Can you give me any idea of what to expect if I make an appointment?
     
  2. SDSue

    SDSue Southeast

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  3. SOC

    SOC

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    Ditto.
    I see Dr Rey at INIM
     
    Sherpa likes this.
  4. *GG*

    *GG* Senior Member

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    Yes, not me, but have seen this mentioned many times. Perhaps a google search with her name and this forum will give you that info?

    GG
     
  5. lnester7

    lnester7 Seven

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    Is good for the immune side of things. I give you 100% cool with them for getting the NK and viruses under control. Dr Vera is new so I don't know much about her. But Dr K or Rey are great.

    Word of advice, do yourself a poor's man tilt table test and go see an electrophysiologyst if it is positive. To see results you have to treat OI + Immune system and any other issues (sleep, Thyroid, Gut...). So with them you will address any immune deficiency and Viral stuff. You still need to address any specific issues of any other specialty. The sooner the better if you just sit back to adress the others it will take toooo long.
     
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  6. Lauren0219

    Lauren0219

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    I see Dr. Rey/dr. Vera at INIM. A short history because I am new to the forums- I was diagnosed with ME by Dr. Lapp in NC in 2005 and saw him for 8 years. When I started seeing him I was a 1 or 2. I was treated with more conventional drugs to help with the symptoms of ME but not the underlying issues- I experienced a remission period for 3 years 2007-2010. During that time I was able to work on my undergrad degree (neuroscience) and have a really normal life with normal energy except for the occasional PEM. I relapsed in 2011 and was at a 2-3 and Dr. Lapp recommended I seek help from Dr. Klimas and have viral tests done. In 2013 I saw Dr. Rey and had blood tests showing an NK cell count as undetected (happens in 1% of klimas patients) and nk cell function of zero. I have HHV6 and EBV. I had a lot of success with Imunovir- was able to take a trip overseas with no PEM after 1.5 years on Imunovir- but it caused me to have an increase in proinflammatory cytokines so I had to DC as it was starting to cause some RA symptoms. A few months later and I am now taking Famvir...but the biggest improvement for me has been due to LDN and a beta blocker for awful POTS. I highly recommend INIM as they treat based on their own research and do not treat too aggressively for PWCs. You might have to call their office several times to get an answer if you are not yet a patient but it is worth it in my opinion!
     
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  7. Lauren0219

    Lauren0219

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    By the way I have been seeing Dr. Vera (she is relatively new to INIM) for follow ups and she is an extremely capable doc! The way she forms my treatment plan is super intuitive and prudent and I would recommend her as much as Rey.
     
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  8. aquariusgirl

    aquariusgirl Senior Member

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    Lauren.. who treated your POTS? tnx
     
  9. Lauren0219

    Lauren0219

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    Dr. Vera prescribed pindolol (a beta blocker). It really helped my energy because I don't get dizzy and I get much better blood circulation. That plus electrolyte drinks works best for me.
     
  10. aquariusgirl

    aquariusgirl Senior Member

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  11. Lauren0219

    Lauren0219

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    Yes I am just familiarizing myself with the forums it's a new thing for me so I apologize if I shared too much....on the other hand I think it is important to share my experience so other people might benefit!
     
  12. littlebird6180

    littlebird6180 Senior Member

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    I see Dr. Vera also and have been really happy with her. She takes a lot of time with you to make sure you understand everything, is very comprehensive and I just really feel I'm in good hands with her. She also recently prescribed pindolol for me as well and I was nervous about starting it but just took my first dose (fingers crossed). LDN has done nothing for me, which stinks.
     
  13. Avengers26

    Avengers26 Senior Member

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  14. littlebird6180

    littlebird6180 Senior Member

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    Life changing. I'm finally seeing a cardiologist too and am on a heart monitor for 30 days but he wants me to switch to atenolol so I'm going to in a couple weeks. His reasons were that it will be much better for the actual condition I have. He also said that many of Dr Klimas' patients who are referred to him end up having a bad circuit in their heart that he ablates surgically and it cures their problems completely. This sounds too good to be true but it's why I'm wearing the monitor. And with how much better I've felt with the pindolol, I'm willing to be a little hopeful.
     
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  15. Avengers26

    Avengers26 Senior Member

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    @littlebird6180 That's wonderful news the medicine is helping you so much. Also, it looks like you are seeing a great cardiologist.
     

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