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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.
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.
