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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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My experience with Klimas

Discussion in 'ME/CFS Doctors' started by thegirlwiththedog, Mar 19, 2011.

  1. thegirlwiththedog

    thegirlwiththedog

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    I just got back from Klimas's clinic in Miami, where I had a very positive experience. Of course, the question is how I'll do over the long term, but the visit itself could hardly have gone better. I have four treatment approaches starting now, and that's before the test results come back. And I'm already feeling better.

    Brief background: I had a very gradual onset over many years. A bit over five years ago, it started getting more serious, and a bit four years ago, I had a dramatic worsening after getting a hepatitis-A vaccine. I found that I had great difficulty walking: it was as if my legs were very very heavy, or as if they weren't getting my brain signals very clearly. That pretty well scared the crap out of me, and I went to a bunch of doctors who said a bunch of mealy-mouthed things. The neurologists told me I was fine, even though I couldn't walk. I saw Michael Rosenbaum in Corte Madera, who put me on a bunch of supplements that seemed to have no effect at all, so I gradually stopped taking them.

    It's been up and down over the years, and for quite a while, I was mostly just not seeing doctors, since they didn't seem to have much to offer. Then three months ago, I suddenly got much, much worse. I've been mostly bedbound, sometimes so weak I could barely lift my head. So that made me get desperate enough to see doctors. I first went to Kogelnik in Mountain View, which is close to me, and he did some useful tests but didn't seem to have much to offer in the way of a treatment. So then I decided to fly across the country to see Klimas.

    Wow-whee, Klimas is impressive. Of course, she has no more clue than anyone else does about the ultimate cause of the illness, but she has a commanding knowledge of its different physiological impacts and how to counteract them. The most dramatic thing she found out in my case is that I have raging orthostatic intolerance, which I hadn't known. She gave me a tilt table test, and after six minutes, my blood pressure plummeted to 88/60. Rapidly thereafter, I felt awful and had a wave of heat and nausea sweep over me. By then my blood pressure was at 80/52. The nurse put me down before I puked.

    She gave me a liter of saline by IV and repeated the test. I was able to finish the repeat, though my pulse was at 108 by the end, and my blood pressure dropped briefly about every six minutes. So Klimas gave me a prescription for a beta blocker, which slows the heart rate and gives the heart muscle more time to fill, which affects some region of the heart that detects these things and regulates blood pressure. (Take that last with a grain of salt -- I was listening to this while utterly exhausted and brain-fogged.) So my instructions are to drink Gatorade or the equivalent when I first wake up and at lunch time, and to take the beta blocker. That should make a substantial difference in my ability to tolerate being vertical.

    One of the interesting things about that is I wasn't aware of the sensation of my heart rate going up. I was certainly aware when I felt like I was going to puke, but I haven't felt that way previously. I had a bit of a clue that I had OI because lately I've gotten short of breath when upright, but it's pretty interesting that it wasn't totally obvious to me given that I'm HUGELY orthostatically intolerant.

    So that's step one, and that should make a significant difference, pronto. In fact, the day after my appointment, I was feeling really, really wiped out, and although we'd hoped to go to the Everglades before going home, I just felt too awful. We had to check out of our hotel, and I was feeling so bad that I called Klimas's office and asked if I could just sit in her waiting room in one of her lovely massage chairs. Hannah, the delightful office manager, got me a Gatorade and PRESTO! I felt a thousand times better. It's particularly interesting because I was feeling awful whether I was vertical or horizontal. Gatorade rules. And over the last week, electrolytes alone have been enough to bring me back from the dead. I'm certainly not normal, but I can have a bit of a life now, which wasn't the case before the trip.

    The second treatment she gave me that starts now is an immune modulator, Immunovir. I clearly have immune dysfunction, given that I have almost no natural killer cell function and I have several activated viruses, and my walking difficulties were originally triggered by a vaccine. (My walking stuff was on full display while I was in the office.) She says that she's not opposed to antivirals, but they're expensive and hard on people. Her preference is first to use an immune modulator like Immunovir, and then she uses oxymarine, the herbal antiviral that Dr. John Chia has developed. She spoke of his work on this admiringly, talking about how he sourced his herbs and that kind of thing. She's had good results with it, and it's cheaper and gentler.

    The third treatment that starts now is low dose naltrexone, which should have an impact on brain fog. I tried LDN myself, but she said that I didn't try it for long enough. It needs at least a three-month trial.

    She also talked about exercise. She encouraged me to exercise in 5-minute bursts, lying down for five minutes in between. She also said that it's easier for ME/CFS folks to tolerate anaerobic exercise, so I should do some very light weight work or Pilates, along with some stretching, again in 5 minute stretches with 5 minute rests. She recommends doing as much as possible sitting or lying down, so Pilates is good since it's on the mat, swimming is good, that kind of thing. She would have given me an exercise test, but the person who does it wasn't available while I'm here. She recommended going to the Pacific Fatigue Lab, so that they can figure out exactly where my anaerobic threshold is. I doubt I'll do that though -- too expensive and too exhausting.

    She recommends taking CoQ10 (or, better yet, ubiquinol, which is the active part of CoQ10), both because it has anti-fatiguing effects and because it helps protect against cancer. She recommends a bit over 60 mg ubiquinol twice a day or 100 mg CoQ10 twice a day, based on a Japanese study of it at those dosages; she points out that we tend to be bigger than Japanese people, so we should take a bit more. Natural killer cells are critical cancer fighters, and I don't have any -- and my mother died of colon cancer at 50 -- so that's particularly important for me. She also recommends 4-6 g per day of omega-3 fatty acids and 2000 mg/day of vitamin D, along with a good multivitamin (I've been taking the latter two already). All of these recommendations have studies to back them up.

    And that's just what she can say without test results. Another avenue for treatment, depending on my results, may be treating low cortisol. I did have test results from ages ago that suggested that my cortisol is low. She tested me for cytokine levels; excess cytokine production may be at the root of both my brain fog and my extravagant walking difficulties. She can block individual cytokines using monoclonal TNF inhibitors. She ordered a sleep study, because ME/CFS folks often have sleep apnea and often don't get much deep sleep, so she'll treat that on the basis of what we find there. (She also pointed out that there's a device sold at myzeo.com to monitor sleep that's quite useful for seeing what's going on over the long term, and it measures how much stage 1 and how much stage 2 sleep you get.) She also was shocked that the neurologists I'd seen hadn't ordered an MRI and said that needed to be done pronto.

    Personally, she was extremely impressive. Compassionate, low key and commanding -- she has a command of the field, an ability to see the big picture, and she clearly really cares about helping patients. It's a tiny operation at this point, just Klimas, her office manager, and a nurse. They have really thought through all the details, down to things like telling you in advance which door to the building is closest to her office (a blessing, since I was barely able to move when I went in). She said that all of her patients have improved, some just a little and some to the point of fully recovering. (The bummer, she said, is that when they recover, she never seems them again.) She also pointed out that we get a skewed picture of things when we hang out on the forums, because the people who have recovered aren't here.

    I wish I'd come years ago. I also wish that many, many more doctors had the knowledge that Klimas does. Again, we'll see: The question is how I do over the long run, and that's a harder test than one impressive office visit. But it *was* one impressive office visit, and her treatments already seem to be making a difference. So I'm grateful.
    CJB likes this.
  2. Navid

    Navid Senior Member

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    thanks for the update...very thorough and informative. your symptoms are just like mine....severe OI/NMH, would you mind sharing the name of the beta blocker she put you on?

    also when your cytokine tests come back did she discuss what the treatment options are to bring down those that are too high?

    did u need a prescription for immunovir? what dose of LDN did she put u on.

    funny, your description of a kogelnick appt was the same as my experience, tons of tests but no treatments offered.....lots of money for nothing, really ; )

    thanks,
  3. thegirlwiththedog

    thegirlwiththedog

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    Atenolol is the beta blocker. She started me on 12.5 mg twice a day, which she described as a tiny dose.

    She said that a monoclonal TNF inhibitor might be the way to treat the cytokines. It depends on which cytokines are high.

    Yes, I needed a prescription for Immunovir. She ordered it for me from a pharmacy in Canada.

    I'm ramping up on LDN: a month at 1.5 mg, a month at 3.0 mg, and a month at 4.5 mg.

    Yeah, I was disappointed in Kogelnik in the end. I think he really wants to make a contribution to the science, and more power to him, but I don't know how driven he is to help patients with the tools we've got now.
  4. Wayne

    Wayne Senior Member

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    Hi Gwdoggie,

    Very much appreciated reading about your visit with Dr. Klimas. Many little items in your review to look at a little more closely, and perhaps integrate into some of my own future planning.

    I was intrigued by Dr. Klimas's comments about CFS forums. In the 2-3 years I've been perusing CFS forums, I've noticed that many who report significant improvements in their health often become the object of anger and derision. If the treatment they used is somewhat non-conventional, their treatment can be even worse. So it wouldn't surprise me if more people recover from CFS than is reported or seen on CFS forums.

    I'm not sure what I would do if I improved significantly. Would I take the chance and report it openly on a public CFS forum, especially since some of the attacks can be pretty brutal? My inclination at this time (sad to say) would be to contact a number of trusted members by PM, and share my results within a relatively small circle of people.

    Thanks again for sharing your experiences. And welcome to the forum; nice to have you aboard! :Retro smile:

    Wayne
  5. dsdmom

    dsdmom Senior Member

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    did she say if this type of treatment was happening yet? Last I heard from her, she was discussing this in the form of a trial.
  6. serg1942

    serg1942 Senior Member

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    Thanks very much for posting in so much detail, and congrats for your improvement! i hope you can recover much more when your treatment is tailored to you accordingly with your test results.

    Best,
    Sergio
  7. Cloud

    Cloud Guest

    Hi Girlwiththedog, Thanks for sharing your story of optimism and hope. If I were on the East coast, Dr Nancy would be the one to see for sure. I agree about Dr Chia's work too. I also believe the statement that many people who recover, or even make significant improvements, are not in the forums. I want to come back to your post and ask a few questions...but for now, I wish you all the best and leave you with the recipe for the isotonic solution I used instead of gatorade. I made it with pure water, good sea salt, organic lemon or lime juice, and natural sweeteners. It tastes much better than gatorade, without the sugar. I made a 1/2 gallon every morning.

    http://www.dfwcfids.org/healing/gokhmbrw.htm#homebrew
  8. LaurelW

    LaurelW Senior Member

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    Thanks for that recipe, Cloud. I've been buying Knudson Recharge (the healthy version of Gatorade), but it's pretty expensive. I drink a bunch if I have to go out, and it really seems to help.
  9. drex13

    drex13 Senior Member

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    thegirlwiththedog,
    I'm glad you had a really positive experience with Dr. Klimas. I've been wondering if I should make that trek myself. If you don't mind my asking, what were the costs of the visit and tests, etc..., and is Dr. Klimas on any of the major insurance carriers ? I hope things continue to improve for you. I also find her comments about CFS forums interesting and I think I tend to agree with Wayne on this. Those who report recovery or significant improvement suddenly find themselves ostracized and attacked for recovering, because of course, if they recovered then that means they could not have possibly had real CFS/ME, CFIDs, or whatever name finally gets settled upon. It's understandable, I suppose, when a person has been sick as long many PWC's have with little or no answers or help, for some to feel a bit of resentment when someone else recovers. Just one more item in the list that divides this community.
  10. urbantravels

    urbantravels disjecta membra

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    That's sadly true.

    I also think it's a frustrating situation because we can never actually know whether a person's self-reported recovery (partial or complete) is actually due to a specific intervention, or whether it's a "natural recovery" that would have happened anyway, or it's just a dramatic decrease in symptoms but not a full "recovery." (Not to mention the people who go into remission and relapse later.) (Or the people who had some other fatiguing condition that resolved, but maybe it wasn't "true" ME/CFS in the first place.)

    Without the good research we need, WITH CONTROLS ... everything is anecdotal, and the plural of anecdote still isn't data.
  11. drex13

    drex13 Senior Member

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    I am one of those who went into a long term remission (dramatic decrease in symtpoms) only to have relapsed over the last 9-12 months.
  12. Cloud

    Cloud Guest

    Hey Drex, The stories of long remissions always amaze me. I have been on a 17 year progressive course with this disease...no remissions. I don't know which is worse, but I do think it would be very hard to relapse after a long period of thinking you had it made. But then, I would love a remission, even knowing it may not be permanent. I guess "knowing" would make all the difference. May I ask what precipitated your relapse?
  13. WillowJ

    WillowJ Senior Member

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    That's very true... it is frustrating because we can't tell... we don't even know if we all have the same disease (even all of us that fit, say, Canadian criteria)... and it will be more time yet before we know...

    Still, that frustrating situation is no reason for the sort of behavior Wayne described. We should be happy for anyone that has a remission or recovery, whatever the reason behind it. Even for purely selfish reasons we should be nice, because they might advocate now that they have the energy. But we should of course be kind and civil just because it's the right thing to do. Being nice can be pretty hard when we feel so miserable, of course.
  14. Otis

    Otis SeƱor Mumbler

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    Same here Cloud. I have had 30 years of accelerating progression. I'd settle for shedding one symptom for a while but I agree that relapsing after feeling well, even by our relative standards, is a cruel fate.
  15. thegirlwiththedog

    thegirlwiththedog

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    Dsdsmom, my understanding was that this is a treatment that she uses regularly and has had good success with. I wouldn't swear that it's non-experimental for her, though, as I was exhausted and brain-fogged.

    Cloud, thanks so much for the recipe. I'll make it! I can't see myself drinking Gatorade regularly for a long time. That also raises a question for me: Is there any reason not to take electrolyte tablets? I end up peeing a lot, and it seems like I might retain more of that fluid if I did.

    Drex13, Klimas does not take insurance at her private clinic, though she does at the University of Miami (but there's a long waiting list there, which there isn't at her private clinic). It cost $900 for the office visit, plus almost $450 for the tilt table test and the saline. I don't know how much the tests will cost, but I'll report back when I do. Some of it will be covered by insurance.

    I also had a remission. Seven months of feeling pretty much normal. It ended a bit over a year ago, and now I'm worse than I've ever been. It was great to feel good during that time, but it does create a greater sense of insecurity: Even if I start feeling way better, who knows how long it will last?
  16. Marg

    Marg Senior Member

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    I am also one with a long remission and 8 year one. Dr Klimas said I had to have a trigger or triggers. I did have a stomach bug a few weeks before but I had started seeing some of the old symptoms again. My sleep was really off. It was the holidays two years ago and I ignored any trouble and went about my Xmas routine, by February I was down again. Dr. Klimas found Epstein Barr and HHV6 reactivated...never knew I had them but the feeling was the same as before. I am not as sick this time so am hoping for the best. I am getting a very good respose to Imunovir. I had no idea I had POTS either and think it is under control with low dose beta blocker and electrolye drink. One thing I know for sure it is best going to a doctor that knows ths illness and has worked with it a long time.

    I think that when remission does come we still have to be careful. I can say that no on ever looked at my immune system like Dr. Klimas. I am planning to go back in the summer.
  17. thegirlwiththedog

    thegirlwiththedog

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    How long have you been working with Klimas, Marg?
  18. Marg

    Marg Senior Member

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    Very good summary of your visit to Klimas Land. I was there last summer and it was an experience. I strarted to write about my visits a few times but could never get the spirit of the clinic to come through, I think you did. The best doctor experience I have had. I am anxious to see numbers and may over night blood soon. My cytokines were 25%more they should be and killer cells less than they should be. Classic case, I guess. I plan to go back in the summer and I would highly recommend the trip.. Dr. Klimas looked at my immune system like it has never been looked at. Epstein Barr and HHV6 had reactivated...never knew that was a big problem before and no one ever got it that I have POTS. I am working on all that now and she did mention Oxymatrine for later. Thanks for posting!
  19. WillowJ

    WillowJ Senior Member

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    She doesn't bill the insurance, but she... designed the fees so that if you presented the bill it would likely be covered? Is that what I heard? I wonder what happens if your insurance requires certain things to be pre-authorized?

    Looked carefully at immune system sounds really good. Florida is super far for me, but I really wish someone would do tests so I know what is wrong. I did find someone who looked for infections (found two), but I would like NK tests and such, SPECT scans if cost-to-benefit ratio was good, something to measure strength/fitness (muscle EEG or Stevens Protocol or something like that), and maybe even that new spinal tap.

    Hopefully after Mangan's workshop they will actually advise doctors on some tests to run for standard assessments. Every other disease has standard things you check from time to time to see how the disease is doing. We should have that with Klimas' NK cell profile, check for active infections, maybe SPECT scan, etc.
  20. drex13

    drex13 Senior Member

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    I'm not exactly sure what caused the relapse, but I believe it was a long series of things combined. My theory goes like this : I had my gallbladder removed 4 years ago (or 5, I can't remember) and have had problems ever since and have gone through periods of being sick and being not so sick, devolped IBS etc... then last February I herniated a disc in my lower back. I went through Physical therapy for a few months and was on Vicodin for several months. During this time I also had 3 epidural injections in my back. These are steroids (cortisone ?) Injected directly into the disc. It is my theory that those injections combined with the Vicodin threw my already fragile immune system into dissarray and here I am. I started to notice problems during PT, when I would be totally wiped out for a few days after a session and I couldn't figure out why I wasn't bouncing back. Things have gone downhill since then.

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