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ACB

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About ACB

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    Female
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    Oklahoma
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    My family, getting off this motherflipping couch!, embroidery, word games, reading, science, nutrition, bargain shopping

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  1. I've been wondering about blood volume since my POTS diagnosis in Feb '11. I have been instructed to salt and water load, but had never had a blood volume test. A couple weeks ago, I went to Mayo Rochester for testing, because my local docs treatment plans were not working. At Mayo, I did a 24-hr urine collection. At my doc and nurse consults up there, I was shown the results of that collection, which indicated that my output was good (meaning that I was drinking enough water), and that my sodium levels were normal. However, they said that they wanted to see my sodium levels at the upper end o
  2. Lotusflower, as far as good initial exercise, recumbent types are recommended by the pros. So, the recumbent bike, rowing machine, and strength training you can do without standing are great. HR zones vary by person and are determined for the Levine protocol by a stand test participants do with their doctor before starting it. Before I started the protocol, right after I got diagnosed, I bought a recumbent bike and just did what I could each day. I didn't know how hard or how easy to take it, so I just did what I could (which was very little at that point!). The exercises on the protocol do i
  3. Lotusflower, I received the protocol through my PCP and have never personally spoken with Levine. I've been in contact via email with a PT who works with him a few times, however. On the protocol, its my understanding that followers are supposed to exercise through the flares and that is what I have done. If I didn't, I'd never have completed the darn thing! I have flares sometimes right after exercise, sometimes a couple days after, and sometimes during - and then I also have flares that seem unrelated to the exercise. Good old POTS and its unpredictability! My response to pushing through
  4. Hi Alicia, I've been working beyond Levine's three month exercise protocol for almost two months now. My ability to do household work varies greatly each day, throughout the day. Usually, I can still do at least some amount of laundry and light cleaning after doing cardio/weight training that day.
  5. OK, folks. Time for a new update on this treatment. I finished the three month protocol a while back and contacted Levine's crew about how to proceed. I was given an (unstudied) extra three month protocol to do. I'm now in the middle of it. These exercises are an extension of what was on the initial protocol. They're harder - I do interval training approximately 1x/wk in addition to continuing the exercises I did during the first three months and I have just one day off per month. Working with my local cardiologist, we decided that I would try the Levine protocol for three months and that if
  6. How timely! I was just logging on to update my original post about the protocol. I'll do that now!
  7. Just wanted to pop in to leave an update about my experience with the protocol thus far. I've recently started the third month of the protocol and about a week or so ago, I started exercising completely upright (i.e., walking!). I'm getting noticeably better each day at this point. For the first month, I muddled through the exercise and didn't see any changes, but did revel in my ability to actually DO the exercise. During the second month, progress generally occurred in the two steps forward, one step backward fashion. In other words, I experienced increased energy, improved cognitive funct
  8. Naomi, Thank you for linking this article! I agree that there appear to be some big problems with Levine's research regarding POTS (as well as some errors/less than stellar reporting by the author of this WSJ article). However, I was interested to read that "Dr. Levine presented research last week indicating that as little as 30 minutes a day of rowing could be as effective as 90 minutes of cycling." I'm currently on week 3 of Levine's exercise protocol, during which the importance of rowing is stressed. This new data was interesting to me and could be helpful for POTSies who *do* benefit fro
  9. I'm starting week three of the protocol today. Yep, HR is individualized based on your 10min stand test. Maybe I'm wrong, but doing a single stand test seems like a poor assessment approach given that POTS is highly variable. In my case, my HR was quite a bit lower the morning of my test than it typically is. I wonder if they'll modify this assessment in the future and how that might impact treatment.
  10. Radiohfan, I'm glad to hear that you're powering through. Keep up the awesome work! I look forward to your next update. Daveb, In my case, it took 1.5 months to get the protocol! Turned out that the delay was due to my PA not faxing my stand test results for a month, though. Aargh! Hope your son gets his in a timely fashion. As far as my progress goes, things are going well, overall. I'm finishing my second week today. I had an increase in symptoms last weekend, however. I think that may have happened because I did three cardio workouts on consecutive days - I was squeezing workouts together t
  11. True about the sodium. My cardiologist hasn't had my blood volume tested and I have forgotten at every appt to request it. I don't know if I should be salt loading or not! Awesome that the diet was helpful for your AS and POTS! Would you care to give details about how the it helped your POTS symptoms? And, did you discontinue the diet? If so, why?
  12. Good question. I'm going ahead with the salt and water loading, even though they're not a part of the diet. In one of Cordain's scholarly articles about the paleo diet, it is estimated that a typical hunter-gatherer would eat approximately 700-800mg of sodium per day. Makes sense, given that sodium would come solely from food sources rather than being additive. On Levine's exercise protocol, I'm supposed to take in 10,000mg of sodium per day. (Yikes!) The most I'm able to get is in the 3,000mg range - and that's with dumping salt by the 1/4tsp-full on my food. I'm just working with what info I
  13. Oh, wow! I didn't know the pasting the link would put the video in my post. Just an FYI: the video is almost 10 minutes long and is the first of seven (yikes!) in the presentation.
  14. Several weeks ago, while pushing through a recumbent bike ride, I stumbled upon a series of youtube videos of Loren Cordain, PhD giving a lecture on the potential of using the paleo diet to treat multiple sclerosis. The title of Cordain's talk was "Potential Therapeutic Characteristics of Preagricultural Diets in the Prevention and Treatment of Multiple Sclerosis." (OK, I'm tired after just typing out that title.) The link is MS is considered to be an autoimmune disorder in which the body attacks the central nervous system, specifically myelin in neurons. No newsflash here: MS and POTS are q
  15. Mary, I also thought there was no way I could exercise. I mean, most days I can only stand less than a minute before having to recline or lay down due to increased fatigue and dyspnea upon standing. So frustrating! Before obtaining Levine's protocol, I started with what was manageable for me on the recumbent bike and with strengthening exercises. You could always have your doc request the protocol for you and try working up to it. I guess I'm just saying that you never know until you try, right? In any event, best wishes with trying whatever you find that works for you - we're all different! D
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