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Just back from Dr. Nancy Klimas

Discussion in 'ME/CFS Doctors' started by shastamax, Jan 26, 2013.

  1. shastamax

    shastamax

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    This was my first visit to Dr Klimas, although I've had CFS for 19 years. I was generally impressed. If you go, here's what to expect:
    The office is currently not very organized. I was told to mail my new patient paperwork to them, but they couldn't find it for awhile and I had to fill it out again. We got there quite early so this was OK. Mail your paperwork if that's what they request, but make a copy and bring it with you. My 2 hour appointment included 4 hours of waiting. Bring lots to read! The waiting room is quite small. The walk from the front door to the office is very short (like 20 steps). Likewise the walk from the office to a limited lunch source (empinadas, chips and drinks) is very short. The questions asked by the doctors are excellent and you will feel very much like you're with people who understand and sympathize with your illness. I was given 2 prescriptions and thorough explanations about what they are for. I had a physical exam and blood drawn but no physical tests such as tilt table or stress test. Come prepared to take notes or bring a significant other/friend to help with this. It's a lot of information, and my taking notes prevented my leaving with the wrong prescription. Dr. Klimas is very friendly and upbeat. Her assistant is very nice also. My followup appointment will be in 6 weeks by telephone, as I live far away.
  2. Sasha

    Sasha Fine, thank you

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    Thanks - it's good for those of us too far away (the UK!) to know what goes on at the good places. Good luck with your treatment!
    merylg likes this.
  3. peggy-sue

    peggy-sue

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    Yes, thanks!
    You seem to have had a lot of patience - I'd go nuts if I was kept waiting for 4 hours for an appointment and that they'd managed to loose my paperwork. "Disorganised" doesn't seem to start describing it.
  4. Valentijn

    Valentijn Activity Level: 3

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    Could you say which drugs were prescribed, if it's not something you want to keep private? I'm a bit curious as to which treatments different specialists use, and what they use them for.
  5. SanDiego#1

    SanDiego#1 SanDiego#1

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    I

    Shastamax- I hope you find treatment that works also. I would not wait 4 hours for any Doctor. Them being that disorganized means they may not know which tests results or tests are yours. Also many other things they may not can FIND. I am sorry to be so negative-but this is ridiculous treatment. I am sure she is not inexpensive. I agree with Peggy Sue. I think these Dr think they have the field sewed up so can treat patients as they wish!!!I was upset with my
    CFIDS Dr. because I had to wait on reports-Nothing compared to your visit.
    Hope it works out .

    San Diego #1

    San Diego#1

    San Diego#1
    MishMash likes this.
  6. Persimmon

    Persimmon Senior Member

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    Welcome and thank you for writing.

    I have a few questions, as I am interested in going to this clinic:
    - How much time did you spend with Dr Klimas herself?
    Also, what role did her assistant/associate play?
    - Did they discuss the option of additional testing (eg tilt-table; exercise test; sleep test etc) or were these not mentioned?
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I've heard that she was this way before her move, hopefully the disorganization does not continue for long, I often have to wait at my Drs office, they spend however much time you need with them, nice thing if you ask me, but seeing how we are all different, this can mean some pretty lengthy delays, but I think the most I have ever had to wait was about 1 hour, and I have a place to rest/lay down if necessary, which it usually is, after a day of work.

    GG

    PS My Dr spends at least 1/2 hour with me, and when I first started seeing him was usually an hour or more! So you can see why the variation in times needed by people, will cause delays, especially as you go further into their schedule.
  8. shastamax

    shastamax

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    Hi everyone:
    Yes, the appointment was long and disorganized, but I've been to worse, believe me! The really important stuff felt very good-i.e. I felt like I was in the hands of someone who is as likely as anyone to help me. I was prescribed Imunovir and low dose naltrexone. She also wants to change the amitriptyline I take for sleep to doxepin. I spent around 45-60 minutes with Dr. Klimas and the same amount of time with the assistant doc. The part spent with the assistant physician (I'm not sure of her name) was mostly answering detailed (and very good) questions about my particular condition. This part also included a short physical- blood pressure standing, sitting and lying, listening to heart and lungs, and checking throat and ears. The exercise test was mentioned by Dr. Klimas and she suggested I have it done at Univ of the Pacific which is close to where I live. She recommended getting tested at a sleep lab as even without symptoms such as snoring, people can still have sleep apnea. Nothing was said about tilt table- perhaps in my case it just wasn't appropriate. I'm glad I went and I traveled 3000 miles to get there. Things are crazy booked up good-CFS-doctor-wise here in California! Also, I didn't make much progress working with Daniel Peterson (and I was bumped to new patient status because I haven't been in awhile) so it seemed time to try someone else.
    Cheers and here's to our better health!
    Shastamax
    Valentijn and Persimmon like this.
  9. Starfive

    Starfive

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    Thanks for the posting! I also live in the SF Bay area and wonder if you have seen Dr Powell in Sacramento?
    or Dr K.? I have not yet seen a CFS doctor in the area yet hope to in the near future.
  10. MishMash

    MishMash *****

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    Dr. Klimas was an absolute sweetheart who really cares about her patients. But unfortunately she's entirely limited in what she can do at this time. The only real benefit I got from my visit was some top-notch immunological test results, which showed I was really sick.

    BTW She is board certified in "Laboratory Testing," which means nobody can quarrel with her lab conclusions. That could be handy if you ever have to present test results for disability purposes.

    When I visited Klimas I got Immunovir, LDN, Ubiquinol, Florinef, and a lecture about buying an clunky sleep-analysis headset; which had the effect of keeping you awake at night. There was also the mention about sleep apnea going undiagnosed (or something like that).

    Also, when I went, several years ago, her office assistant was Hannah, who had a photographic memory, and personally looked out for every patient. She was amazing. The replacement is not as good, as I understand it.

    But I've given up going to her or any other CFS guru docs, because they are all rather expensive, they tend to be disorganized, and the travel getting to their locations does not equal the treatment you actually receive. It's been a little bit of an exercise in wishful thinking.

    If a new treatment comes out for CFS that really works, we will hear about it very quickly. If not in the media, then in the social media cloud, or here on PR. I'm pretty sure the CFS docs aren't keeping any secrets. I definitely would not fly to a different country seeking treatment for CFS. Save your money if you are thinking about coming from UK, Australia, etc.
  11. madietodd

    madietodd Senior Member

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    MishMash: "When I visited Klimas I got Immunovir, LDN, Ubiquinol, Florinef," Did these help you at all? Or was the visit a total waste for you?
  12. MishMash

    MishMash *****

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    No, I'm glad I went. But that was just for the extremely high-quality lab testing she did, showing I had elevated NK cells, elevated IL-6, etc, etc. She found a total of four reactivated viruses. She was actually interested in what that might mean. You don't really get that from ordinary docs.

    She also told me that she does really trust the lab results that other patients bring in with them. She personally visits / inspects the labs at UM to make sure they are not letting blood sample sit around, yielding inaccurate results. She is very rigorous. Plus she is a very kind lady, who doesn't judge her patients (who must sound really whiny to most doctors).

    Other than that though I did not get much concrete beneft. I took the prescribed supplements and drugs for a while, but stopped coz they didn't agree w/ me. She is stuck in the same ditch as the rest of the medical world. Science must march onwards.
    SanDiego#1 likes this.
  13. snowathlete

    snowathlete

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    Sorry to hear your appointment had some issues, im surprised that her clinic is so disorganized. She certainly has a good reputation as an ME doctor and it sound like it wasnt all bad.

    Can i ask why she wanted to change you from Amitriptyline to Doxepin? Im interested because i take Amitriptyline for sleep too. I also got a sleep study as my ME doc who diagnosed me wanted to rule out sleep apnea. I didnt have it, but it was definately good to rule it out and discover exactly was happening.

    I really hope it works out for you, keep us posted!
  14. SOC

    SOC Moderator and Senior Member

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    So what are you expecting from an ME/CFS specialist? It's not like there's a cure available. Many patients would be more than happy to have a doctor who would prescribe and monitor progress with Imunovir, ldn, and Florinef. Those treatments can substantially improve quality of life -- something most of us would love to have.

    Did you get any improvement in your NK cell function or virus titres during the time you were on treatment? How long did you take the prescribed treatment, if you don't mind saying?
  15. SanDiego#1

    SanDiego#1 SanDiego#1

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    SOC- What I expect from one of these Dr. is for them to monitor the tests they do. Also to recommend someone a little closer to where most of us live. IF THEY DO MONITOR THEM. Not a one shot deal where you have to travel thousands of miles to be retested. If you are sick -you can't do that. At least I can't. There has to be a lab that can do some of these tests that are not in California, Arizona, and NJ. Australia. Ridiculous!!!

    San Diego #1
    MishMash likes this.
  16. SOC

    SOC Moderator and Senior Member

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    I can certainly understand that. I think we'd all love to have a doctor closer to where we live. The closest one to me is about 300 miles and his treatment is very limited, so I have no choice but to travel.

    As for the immune tests -- there are very, very few places that can do the specialized tests for NK cell function. It's not a standardized test, it's a research test. To add to the difficulty, the blood test has to be started within 24 hours of the blood draw at the very most, and preferably much less, so collecting and shipping from your home lab is frequently not feasible.

    I wouldn't do a one-shot deal, either. Unless I needed the immune results for some other purpose, I don't see the point. Drs Klimas and Rey expect to see patients once or twice a year and will do phone consults in between. They are willing to let you get many tests done at your home lab when possible.

    I also agree that doctors should monitor the tests they do, assuming that means look at the results, draw conclusions, and devise a treatment plan if needed. Otherwise what's the point of having the tests done?

    Sadly, we have an illness for which there is no established treatment, and for which there are very few knowledgeable doctors. Most of our specialists are researchers working at the cutting edge of knowledge about the illness. If we want the best available treatment, we have to go see those few at the forefront, and get tests that are rare and difficult. It sucks, but that's the current reality of our illness.
  17. SanDiego#1

    SanDiego#1 SanDiego#1

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    SOC- I agree to a point. However in reality there is no established treatment for any Auto-Immune
    Disease. Everyone is different depending on the Physician and what a patient will accept or tolerate.
    I hope it works out for you as I know it is frustrating. Keep all of us informed.

    Best-
    San Diego
    August59 likes this.
  18. SanDiego#1

    SanDiego#1 SanDiego#1

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    Something everyone may be interested in is I have recently stopped taking my Immune Globulin shots as mfg has added a detergent that does not work for me. Dr. Cheney suggested since many of his patients he has taken off of GcMAF have used this and wanted for me to try it. It is Raw Colostrum from Kirkman's lab . I use Hypoallergenic. Gold liquid..I have had very good results from it. I take it in small amount of Greek Yogurt. I can definitely tell a difference in energy and cognitive factors. Been on it about 2 weeks. You do not need a RX for it . I am only using 1 tsp once a day or 1/2 twice a day. Dr. Cheney said I could do 1 tablespoon. I haven't had to do that The Gc protein alone in raw colostrum appears to prevent Immune Resuscitation Inflammatory Syndrome (IRIS) as Gc protein in the colostrum halts macrophage cytokine production and opposes GcMAF which activates macrophage cytokine production. Don't know all the technology-just know it works for me.
    jsfm, SOC and voner like this.
  19. lnester7

    lnester7 Seven

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    I have been looking for colostrum TX FOR THE INFO!!! Do you know why this patients are getting Off of GCMAF and into colostrum instead?
  20. SanDiego#1

    SanDiego#1 SanDiego#1

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    These came in response to inquiry from another Dr. about using GcMAF either chemical from the Netherlands or Probiotic from Dr. Ruggiero in Italy. He states the Probiotic GcMAF is stronger and more primordial in concept and is not a drug like chemical GcMAF. He says however he would use neither if your Nagalase is below 2.5-3.0 and would stop altogether if it after it drops to 1.5.As Nagalase drops to 1.5 he saw sig cytokine storms. He says not to mix GcMAF and Vitamin D as they are synergistic. He said he eventually tapered probiotic GcMAF to raw colostrum from Kirkmans lab in Plain yogurt. This is as technical as I can get. Also said stem cell therapy seem to work or had benefits during the first year but after that had varying degrees of relapse (full or partial). Best benefits were for those under 35. Says has seen some success with both with both GcMAF and afterbirth derived from Stem Cells/ But there are many different outcomes and complicating factors.

    San Diego
    jsfm and lnester7 like this.

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