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My journey with functional medicine -- wheat-free,dairy-free,sugar-free

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    #46
    Appt #7 -- High Vitamin D protocol?

    Appt was Thursday. Sorry I'm so slow to post update.

    We reviewed how my week went, in terms of compliance. I'm doing pretty well, as far as diet. I also shared some of my thoughts on his list of lifestyle changes. We had some discussion about that. We didn't always agree on what activities are stress-reducing and which are stress-producing. But, he's somewhat flexible. I'll see what he says next visit, when I document things my way, instead of his way. I could try to do all of his suggestions and check off his little boxes to make him happy. But, making Dr. G happy isn't going to help to manage my stress; I have to make me happy, not him. I'm going to need to manage / prevent my stress in ways that work for me, not for him.

    Dr. G also talked alot about Vitamin D supplementation. He'd like to recommend a really high dose -- like maybe 40,000 mg daily. I'm currently taking 10,000 mg a day, which my MS Specialist (Dr L) already believes is too high.

    Dr. G is aware that Vitamin D can be toxic at doses too high. He believes that, if taken correctly, it can be safe up to 60,000 mg. I don't remember all the protocols for taking it safely at high doses. It involved some additional supplementation of other things and drinking lots of water, I believe.

    We spent a good deal of time talking about that, because I have some reservations. It's a dilemma when two doctors are recommending very different strategies. Dr. G reminded me that I am paying him for his expertise. I reminded him that I am also paying Dr. L for her expertise. Dr. G's training, however, is specifically in clinical nutrition. I don't know how much training a neurologist gets in nutrition, but I would guess that it is not much.

    Dr. G is going to send me some links to some articles from medical journals that support his recommendations. I'll read them and see what I think. He believes that high doses of vitamin D have the potential to reverse myelin damage. And, he says, there are not many strategies that can make that claim.

    He, actually, just learned about this research recently. Another MS patient of his asked him about it, and he just recently read the research himself. He has not tried it with anyone else yet. Maybe that would make me his guinea pig.

    But, I'm not opposed. I just want to think it through a little bit first and make sure that, if I take a high dose of something that is potentially toxic at high doses, that I am also taking appropriate precautions.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    Comment


      #47
      Appt #8

      Appt. was Tuesday, Sept. 6.

      We reviewed my compliance.
      • -I'm complying with no-wheat, no-dairy completely.

        -I'm not adding any sugar. I'm mostly eating raw vegan at home. But, occasionally, I eat somewhere else. I had a meal that included sweet potatoes at a volunteer activity last week that would have had a little bit of sugar on.

        -I'm including meat about 3 meals per week. Dr. G suggests no more than 5 oz per week (but no limits on fish), but he doesn't empahize that strongly. He also recommends grass-fed meat, free-range chicken and wild-caught fish. We're still cleaning out our freezer, so our meat isn't all in compliance. And, restaurant meat isn't in compliance.

        He recommends one 8 oz smoothie per day. I usually have 24 - 30 oz. I do a lot of smoothies.

        -He recommends a certain amount of fruits, vegetables, nuts / seeds per day. I'm usually in compliance, or at least close.

        -He recommends half our weight in ounces of water / liquids daily. For me, I should be drinking 65 oz per day. I'm closer to 30 oz, which is ore than I used to drink. It makes me use the bathroom so frequently. I'll try to keep gradually increaseing that.

        -He recommends fermented foods. I've been adding 1-2T of apple cider vinegar to my large smoothe each day. It's hardly noticable in there, as compared to how awful it tastes in an 8 oz glass of water.

        -We've purged our kitchen of plastics and teflon / non-stick pans. I got my housekeeper on-board with using non-toxic cleaners. I'd already been using some non-toxic personal products (shampoo, toothpaste, etc) for several years. I'm not using the microwave.

        -He recommends life-style changes to reduce stress. I do some of his, but I've substitted some for alternate activities. Some that I've done include meditation, prayer or serenity prayer, family time, positive time with "right tribe" friends, listening to music, playing piano, etc.


      We talked a lot about Vitamin D. Dr. G wants me to add K2, K4 and K7 to my supplements, in specific amounts and to, over the next week, increase my vitamin D to 20,000 mg.

      CAUTION -- I am not recommending this to anyone else. It can be toxic at certain levels, and he is recommending that I follow a specific protocol so that it won't affect me in a toxic manner. He also plans to do lab work to monitor it. You should only consider something like this under a doctor's supervision.

      I haven't started this yet because I don't have the Vitamin K supplements that I need to add yet. I also want to ask him more about calcium and about drinking more water, because he said something about those once too -- about needing a certain amount of a certain kind, but I think that was related to an even higher dose. So yeah. I haven't started yet. When I do, I want to be sure that I understand everything that will protect me from consuming Vitamin D with a toxic risk.

      Next appt: Sept. 12
      Last edited by Mamabug; 09-28-2018, 11:42 PM. Reason: Added spacing to make reading easier.
      ~ Faith
      MSWorld Volunteer -- Moderator since JUN2012
      (now a Mimibug)

      Symptoms began in JAN02
      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
      .

      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

      Comment


        #48
        Appt #9 and #10

        Sept. 12 --
        Sorry I didn't post sooner. We mostly reviewed my compliance again. I've continued to be pretty compliant with diet, especially not cheating on wheat and dairy. I'm making additional lifestyle changes as I have the energy; I've sort of put most exercise on hold. I just don't have the physical or emotional energy to do everything he wants.

        He's Ok with that. "Progress over perfection."

        Sept. 26 --
        For most of the past two weeks, my daughter and her family (hubby plus 2 1/2 year old plus crawling 10 month old) were visiting. We talked a little bit about how I managed the additional stress of cooking. Often, I only cook once or twice per week and do a lot of raw vegan / fend for yourself stuff the rest of the week. Son cooked one meal (he usually does). Daughter cooked one meal and packed a picnic lunch another time (I took my own separate raw vegan food because it was mostly wheat, dairy and processed meats). Both helped with other meals, sometimes, that I prepared.

        I cooked some meals that we could all eat. Sometimes there were leftovers for another meal. I cooked some meals with Schwan's stuff from the freezer that I'm trying to get rid of and I ate leftovers. We went out for a few meals where I could order something appropriate. We did carry-out a few times and I ate leftovers.

        I didn't do any planned exercise, but had a similar amount of steps to a previous goal on my fitness tracker. More up and down off the floor. More outside time -- Dr. G likes it when I'm in the sun ten minutes every day. I'm often not. Lots of "right tribe" time -- time with friends and family members who have shared interests and values. And, I love spending time with my grandchildren!

        We talked about balancing hormones naturally by building resiliency. Building resiliency involves social time (he recommends 3-6 hours per day). If I include time spent with hubby, I sometimes have 3 hours. Other days that I approach or exceed 3 hours include small group nights (prayer and sharing with 6 of us female friends once every two weeks), volunteering at Circle of Hope (once a week, when I go -- sometimes only 2 or 3 times a month), Sunday School and church weekly. Occasionally I attend a political candidate forum that I'm interested in, sometimes I go to the Rec Center for Silver Sneakers classes -- that's a little bit. But, most days, I don't do much outside of the house.

        I have a few ideas for increasing away-from-home social time; I'll have to work on that.

        Other resiliency activites he recommends include self-enrichment time, "comparmentalization and balance", and believing that everything is a choice.

        He recommends "eating for hormones" by increasing "natural progresterone" foods: alfalfa, fennel, peas, red beans, anise, green beans, pomegranates, rice, apples, potatoes, garlic, sage, carrots, sweet potatoes, cherries, licorice, pumpkin seeds, dates. Almost half of these foods are currently on my restricted list, due to my food sensitivity test. But, I eat some, and I can try to increase them.

        He also recommends reducing hormone exhaustion. Emphasizes this -- says it's very important. This includes:
        • -purposeful and mindful mediation -- 10 minutes per day
        • -power posing for 2-3 minutes -- 3 times per day. For this, he recommended a TED talk by Dr. Amy Cuddy. I haven't watched it yet.
        • -Imagery. Find your happy place; engage all 5 senses in your memory.
        • -Taking time for yourself. This included a bunch of those things he called lifestyle changes awhile back: mandala coloring books, gratitude journaling, nature staching, time with "right tribe" friends, going for a walk or a stroll, petting a dog or a cat, watching a fish tank or a lava lamp, etc.

        I'll have to work on these. I've been doing some meditation and "taking time for yourself" but probably not as much as he recommends. And, I'll have to start some of the others.

        Next visit: October 11. He wants me to come with a list of what things are difficult for me (physically, mostly, I think.) It sounds like he kind of want a baseline so that I can measure my improvements and compare where I was with where I progress to.

        So far, I think that, since I've started seeing Dr. G, my MS has not gotten worse. And, before, it had been, over the previous 6 months, and year or 2 or 3. But, I haven't noticed continued progression of my MS since I started seeing him the end of June. I've also experienced a couple of times when it seemed that I had more stamina to stand for longer than what I can usually stand for. I didn't think to mention it to Dr. G, but when I saw my kinesiologist this week (I hadn't been there for quite a few months), she said that my "organs" and my "systems" tested healthier than they had the last few times.

        2092
        Last edited by Mamabug; 09-28-2018, 10:58 PM.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #49
          Appt. #11

          We completed Dr. G's protocol packet last visit, two weeks ago. Over the past 10 visits, we had focused on 8 strategies for health: Food, Movement, Immunity, Breathe, Stress, Hydration, Hormones and Purpose. Last visit, we also talked about the Blue Zones. People from 9 different locations, world-wide, live about 10 years longer than other places and live happier and healthier lives. We looked at what people from those nations do differently.

          The Blue Zones: Lessons for Living Longer From the People Who've Lived the Longest https://www.msworld.org/forum/showth...38#post1513838

          This visit, I reported on how I'd been doing.

          Pretty compliant with dietary guidelines. I especially stick to no wheat, no dairy. Other guidelines (food sensitivities), I stick to really well at home, but sometimes, when i'm away from home, my options aren't available. Dr. G is OK with that.

          He especially wanted to know how I was doing with other lifestyle changes that reduce / manage stress, and practice resiliency. I worked pretty hard, these past two weeks, at adding activities that create happiness. I had a list of activities that I'd included, such as mediating, prayer, playing piano, enjoying a cup of tea, listening to happy music, keeping a gratitude journal, adding social activities with other people, etc.

          We identified some of my MS challenges: low stamina (walking only 1 1/2 or 2 blocks, standing during exercise time before needing to sit for remainder), falling asleep at night, gait (including weakness in quads on L leg), urinary frequency or leakage, etc. We evaluated which challenges have already improved somewhat since I began seeing him in June. An he helped me identify strategies for them. ie: PT exercises for quads, raspberry leaf tea for urinary issues, etc.

          Next appointment is scheduled for November 8.

          2325
          Last edited by Mamabug; 10-13-2018, 12:46 PM.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #50
            Next appointment Thursday

            This thread is long enough. I'll start a new one.

            2958
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #51
              Appt #12

              I started a new thread.
              https://www.msworld.org/forum/showth...26#post1514726
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment

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