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Nancy Klimas Opening ME/CFS Clinic Next Month

Discussion in 'General ME/CFS News' started by Cort, Sep 14, 2009.

  1. shrewsbury

    shrewsbury member

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    I had written to the Klimas clinic at info@cfsclinic.com to express my enthusiasm and good wishes plus my concerns about Chronic Fatigue Center as the name.

    The Administrator, Hannah Olanoff, was kind enough to write back. She said that while the clinic will have a specialty in Chronic Fatigue Syndrome, many people with profound fatigue don't know the cause of their fatigue and this clinic will be an expert place to go and find causes for those symptom
    complexes.

    islandfinn
  2. Aftermath

    Aftermath Guest

    Outrageous Pricing

    As much as I respect Dr. Klimas, the pricing advertised on her Web site is absolutely outrageous.

    $1,500 minimum is absolutely off the wall--and this is for a visit not with Dr. Klimas, but one of her nurse practitioners (this is not a knock on NPs--I agree that they often provide outstanding care--but on pricing for a visit with one).

    My first visit with Dr. Susan Levine was under $200. Dr. Natelson was under $600.

    Considering the cure rates (or even substantial improvement rates) with this illness, spending this type of money on any physician is simply foolish. We are better off funneling our money toward WPI in anticipation of the day where research will reveal understanding of the mechanism behind this illness and produce some research validated therapies.

    Then, the supply of competent docs will increase and the prices will fall to standard infectious disease/medicaid rates.

    Still, I give her tremendous credit for refusing to be involved with an investor who had the goal of going down the road of hawking questionable nutriceuticals at outrageous markups.
  3. calzy

    calzy Senior Member

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    those of us that are slaves to long term disability companies must have an expert to manage this illnes or they will cut us off without an explaination.:(
  4. Matter of economics as usual.

    Initial appointment Max: $3,300
    Follow up appointment: Max: $2,000

    It is quite expensive, $5,300 max for two appointments without lab fees apparently. How much are lab fees going to be? a couple of $100? or more?

    Having said that, we don't know if these costs include such things as:

    Brain scans (usually over $1,000).
    TILT test (need a cardiologist and team of nurses).
    Or are they 'just' blood assays?

    What's so sad is that 99% of people with this disease don't have any income of any sort to pay for their care.

    If it's 5 grand ($) for the Floridian 'locals', then travelling costs in an ambulance (e.g from west to east of USA) would maybe equal another $10 grand if you need a nurse escort? Certainly if using air ambulance. Probably more like $20-$30,000.

    So if you don't have insurance, for someone extremely disabled (bed ridden) who can't use a train/car it would cost $10-15,000
    to get there (or more) by road ambulance including staying in a hotel and waiting for a follow up appointment.

    That works out about the same for me in the UK to get a road ambulance from UK to Belgium with a paramedic and see Dr Kenny De Meirleir
    (Quote was $8,000 travel costs before clinic costs), and that's nothing like the thousands of miles Americans would need to travel from Cali
    to Florida. Or Japan to Florida.

    As incredible the price looks for this CFS clinic, to be fair to Nancy I think the costs are just the going rate in medicine.
    Health care is so expensive, tests are very costly. Even purchasing immune tests online, you can soon spend $2,000.

    Doctors over here in UK, if you pay cash - charge up to $400 for 30 mins consultation, patient history, and a letter to say there's nothing wrong. LOL.

    And thus we were never given any health care worlwide, CFS was a great way out for not pipointing the cause of our gross disablities.
    Psychology is so much cheaper, and removes responsibilty on government agencies to act.

    It was inevitable that when private clinics DO act, we're then shocked at the prices that are just way out of our league. :(

    Only the fortunate and priviledged currently get health care for this disease. If I had anything valulabe I'd sell it for cash when the WPI opens it doors in 2010 and we know they're prescribing appropriate medications that no one else can. Which hopefully they will.

    Then it's time to blow our wad of monopoly money in a Nevadan Casino to fund the ambulance trip home!
    For people in the area, I would imagine Nancy's clinic is very much welcome - albeing rather difficult to get 'into'.
  5. gracenote

    gracenote All shall be well . . .

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    what it may provide

    I think your use of the word "foolish" is maybe not the best choice of a word. You may be completely correct that the money may not translate into a "cure" or even "substantial improvement," but for those who can manage to pull together payment, it may provide a needed diagnosis, enough improvement to make life more manageable, better understanding and support from family, a glimmer of hope, or priceless peace of mind.

    I spent a whole lot of my student loan money on out-of-pocket medical care that has not ended up helping very much physically. But I am not sorry even as those loans now hang over my head. Spending that money felt like I was doing everything I could to help myself and that provided its own type of healing.

    It is very, very sad that so many of us cannot afford these prohibitive fees.

    And now that I've written all this, I'm wondering if I missed your point just a bit. You mentioned finding less expensive medical treatment that helped you. Maybe I am just trying to say (and by this point in my response I'm no longer sure) that despite the expense of this new Chronic Fatigue Center, for some it may prove worthwhile on many levels even if it doesn't provide everything.

    I'm going to stop now. I don't know if I've said too much or not enough.
  6. Kati

    Kati Patient in training

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    Let's hope that in the near future, your local HIV dr will be able to treat all XAND related disease and the high profile doctors will be there to treat the more complicated cases or will be spending more time on research and teaching family physicians.

    And let's hope that the HIV dr won't be call that but simply retro-virologist.
  7. andreamarie

    andreamarie Senior Member

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    My concern about Dr.Klimas clinic is even if I could afford it (and ironically fifteen yrs ago when I was dx I could) will she do anything that the very bright, dedicated doc I saw for years has not already tested me for or tried. I do not need "back to basics" and I fear that's what a large part of the fees would cover. Inevitably, she will dx patients who have severe fatigue, not CFIDS, that their PCP's and other specialists overlooked.
  8. andreamarie

    andreamarie Senior Member

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    re lab fees. DO NOT UNDERESTIMATE THEM. My gastro did lab fees because he was concerned with liver disease and they came to $1,000. My insurance covered everything. But since Dr.Klimas doesn't take Medicare, even though I have excellent supplemental insurance, nothing would be covered. That is why I'm waiting to see what tests she does. My docs here who do take Medicare would do them.
  9. bee33

    bee33

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    I would be interested in knowing more too. I live in NYC so I could potentially go see him, but he doesn't take my insurance. Is it worth paying out of pocket to see him? In the context of this thread his initial fee of $650 seems downright modest, but it's still a significant amount of money.
  10. bee33

    bee33

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    You make a really good point. I think it's important not to discount the peace of mind that simply having one's symptoms acknowledged by someone who truly understands them can bring.

    But for myself, I find that going to see any doctor, even an understanding one, is very difficult and very stressful. Even seeing a psychotherapist has been very stressful and did not make me feel better emotionally but much more stressed, and angrier, more confused and more bitter. (I've been to quite a few, so it's not just that the individual therapist was not a good fit.)

    I know this will sound absurd given the toll that CFS takes on us, but I am terrified of blood tests. I find them excruciatingly painful. (Perhaps this has to do with the heightened pain sensitivity of FM. I wonder if anyone else here has had trouble with this?). So I really have to work up all my courage just to go and submit to one.

    And I have never received any treatment that was at all helpful. So I am very reluctant to put myself through a doctor visit unless there is some very real physical help that I can hope to derive. I'm posting because I'm wondering if anyone else has similar feelings. (Or am I just a crybaby? :( )
  11. andreamarie

    andreamarie Senior Member

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    Bee, re blood tests. I have small, thickened veins. This has NOTHING TO DO WITH CFS. I have to get an IV every three to four months for a procedure. Again, NOTHING TO DO WITH CFS. I've at times, had to have pedi needles used because I was dehydrated which makes it harder. Also, is is possible for a cream to be applied that would numb the area?
  12. bee33

    bee33

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    Thanks for your reply, andreamarie. I'm sorry to hear you have to frequently deal with what must be unpleasant procedures.

    There is an anesthetic cream (it's called Emla, I believe), but from what I've read it's usually used for children or for procedures where they have to cut into the skin. I'm reluctant to ask for it because it's already so hard to have the symptoms of CFS and FM taken seriously by doctors that I worry I would just be pegged as a whiner for complaining about a simple blood test.
  13. Chrissie

    Chrissie

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    The tests from Kilmas cost $1500 all in. People with insurance can be covered for the testing as far as I know, just not the consultation.
  14. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    Chrissie, do you know which tests exactly are included?
  15. Chrissie

    Chrissie

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    I'm going to seem a bit stupid as i'm planning on seeing the woman...but no actually. I will try and find out.
  16. bee33

    bee33

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    I've made an appointment to see Dr. Enlander. He has a long list of tests he wants me to do as well, but since he doesn't take my insurance what his office suggested was that I get the tests done ahead of time through my own doctor to save on the expense. (I think the office fee will still be $650, but it would be much more with the tests. I was told that the echocardiogram and carotid test alone would cost $500.)

    I wonder if taking the tests ahead of time with one's own insurance coverage could also be done if people want to see Dr. Klimas?
  17. That's a fair price, a full blood count/thyroid/U&E's in private health care over here cost me $1,000 (credit card, no insurance exists) 5 years ago.

    So in 2009/10 for many tests you're getting a good deal.
  18. fresh_eyes

    fresh_eyes happy to be here

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    Not at all! :) Do let us know what you find out, if you don't mind - I'm thinking of seeing her too.
  19. Nielk

    Nielk

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    Dr. Enlander

    Bee33,

    You asked about my experience with Dr. Enlander in NYC. I am very satisfied with his care. He initially takes a physical and a lot of bloodwork and talks to you. It's on your return visit that he maps out the therapies, since it's all individualized based on the test results. His basic protocol is weekly injection of cocktail of hepapressin, b12, glutathione, magnesium. He'll add supplements to fight brain fog and boost immune system. And then base on your symptoms he'll treat insomnia, pain etc..

    I had also gone to Dr. Natelson in NJ for a few appointments and felt that he was more interested in studying me than treating me.

    The truth is that each of us are so individualized that not one treatment will work for everyone. (as we can clearly see following the forum posts.)

    I personally, like him and trust him but I'm also realistic that there is no magic
    bullet that will cure me, especially since I've been sick so long.

    If you go to him, I wish you the best of luck and hope that he can really make a positive change for you!

    Nielk
  20. bee33

    bee33

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    Thank you Nielk. My appointment is for late January so I just have to wait and see for now.

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