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My journey with functional medicine, Part 2

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    #16
    Appt. #15

    My appointment with Dr. Garrett was yesterday, March 14.

    He checked in with me about past kidney / bladder symptoms. They seem gone. The only symptom that might be somewhat related is urination continues to seem more frequent than before, but that's not a big deal.

    He also checked in with me on what I'm doing with Vitamin D3. In addition to re-starting the higher dose last month, I've also begun slowly increasing it, along with the recommended Vitamin K, in order to try to reach Dr. Garrett's recommended dose. I've had no negative symptoms with the increase. My follow-up appointment with Dr. N, urologist, is scheduled for April 4.

    We reviewed my MS symptoms, to see whether they had progressed, or improved, etc. No symptoms have been worse, except one day last week when I was starting with a bad cold. My ability to go down sidewalks curbs without a cane seems to be improving slightly; I try to go down without using my cane to help and I can do that sometimes. Also, a week or two ago, when we went to the pool at the YMCA with my daughter's family, I was able to function without exhaustion after getting out of the water. For me, that's a significant change. Usually, I'm so exhausted that it's difficult to change out of my swimsuit and into my clothes; and I need my cane on one side and my husband on the other side to walk out of the building and to the car. This time, changing clothes was fine, I walked out of the building with just my cane, and, although I was somewhat tired and requested hubby's assistance to the car, I wasn't exhausted. When I got home, I didn't have to sit and do nothing and recover.

    1489
    ~ 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


      #17
      Appt #16

      Reviewed my disease progress. There really was very little difference since last visit, except that I've often been able to fall asleep without Valerian.

      I have some toenail fungus which I'm treating naturally.

      Dr G talked about placebos and nocebos. A nocebo is when we don't get better because we don't believe treatment will work. He thinks that is slowing / stalling my healing.

      He loaned me Dr Wahls' protocol book. He has not treated many with MS (3or4) but claims 100% success.

      I've always had some skepticism. Maybe this can help me believe more in the food as medicine approach.

      On the positive side, I'm not getting worse anymore. Some friends seem to think I have more energy.

      I continue to include things that complement his approach -- acupuncture, kinesiology, my monthly peer counselor, my small group and church activities, a little bit of volunteering. And I'm getting ready to start an in.form maintenance group that is studying The Daniel Plan.
      ~ 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


        #18
        I believe food matters because what you eat determines which bacteria thrive in your gut and the gut-brain axis is key to how your brain is doing. Feed the good bacteria and starve the bad. Your immune system has a grand role in your gut so itīs all connected. Then thereīs the molecular mimicry and leaky gut so if you eat gluten and your GI tract cells have loose junctions, then proteins enter the bloodstream and cause a reaction from your immune system.

        Iīve started on a grain bowl kick- quinoa, kale, a protein, maybe mango or beets or sweet peppers. Change up the dressing and youīve got something new every day. Donīt forget to massage the kale!

        Comment


          #19
          Temagami --
          I'm interested in following you. Please let me know if your change in diet results in any change in symptoms.
          2047
          Last edited by Mamabug; 05-11-2019, 01:53 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


            #20
            Originally posted by Temagami
            I believe food matters because what you eat determines which bacteria thrive in your gut and the gut-brain axis is key to how your brain is doing. Feed the good bacteria and starve the bad. Your immune system has a grand role in your gut so itīs all connected.
            I'm curious: Have you read Dr. Gundry's thoughts/theories as he explains in the Plant Paradox book?
            59M / RRMS / Dx1987 / Ocrevus

            Comment


              #21
              Originally posted by Golgotha View Post
              I'm curious: Have you read Dr. Gundry's thoughts/theories as he explains in the Plant Paradox book?
              No; I haven't. I'm not much of a reader anymore. I used to be. I'll have to get through The Wahls Protocol first.

              I'm also reading The Daniel Plan for an IN.FORM maintenance group that I'm in. It also has a good focus on health.

              I'll try to put it on my "To Read" list. I do focus on getting mist of my protein from plants. I'm not vegan or vegetarian, but I don't consume animal protein every day.

              What are your thoughts on the book, Golgotha?
              ~ 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


                #22
                Originally posted by Mamabug View Post
                What are your thoughts on the book, Golgotha?
                Sorry for dropping this; I just caught your question so a delayed answer.

                He's got some skill as a writer. He deals with enough of the science to hit that angle and does a good job putting things in layman's terms. He does a very good job explaining why he's making the recommendations he does. The Plant Paradox is an easy read.

                As someone who grew up on a farm his explanations of fruit and why it's bad the way we eat it now, and the links into the letin ideas ties things together to make that recommendation (eating only local/in-season fruit) "logical." To me that's the most "radical" part of the diet.

                He dedicates some space near the end of the book noting that he sells supplements which raises sort of red flag in me. Is it a money-grab type of thing? It's not over-the-top, and he notes lots of local recommendations for the same supplements.

                The overall theory appeals to me on the one hand, but the wide scope of lectins being behind lots of auto-immune diseases (all?) and many other health problems both makes sense and is also over-the-top at the same time; if you know what I mean.

                If he's a snakeoil-salesman he's a good one.

                In one video I saw of him he said he first wanted to tackle "curing" MS. Obviously that didn't pan out.

                But to me, a "cure" for MS is difficult because it would have to encompass 2 separate things:

                (1) Stopping/ending the immune system attacking the brain/spinal cord.
                (2) Re-mylinating the damaged brain and nerves. (My guess is that would be a slow process.)

                Frankly, I'll be happy if the diet accomplishes #1.

                I'm still moving in the direction of doing the diet. I've started avoiding lots of things, wrapping my head around what I'll need to do, started pressure cooking some things -- stuff like that.
                59M / RRMS / Dx1987 / Ocrevus

                Comment


                  #23
                  Golgotha --

                  I just saw this today, so I guess I dropped the ball too.

                  Thanks for your detailed description of the book. I'm still, slowly, working on reading my two books.

                  I've also not updated this thread for awhile, even though I've had an appointment with Dr. G and multiple other appointments.

                  I'm not sure how much interest there continues to be from our members, so I don't want to belabor my experience with functional medicine.
                  ~ 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


                    #24
                    I love reading your posts! I think there is not nearly enough emphasis on functional medicine. The whole body works together and it makes no sense to me that we are so focused on isolation of issues when treating a person.

                    Comment


                      #25
                      Thanks, Sara.

                      I haven't been diligent at keeping up with recording recent appointments. My next appointment is scheduled for October. Maybe I'll try to post an update before that.
                      ~ 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


                        #26
                        Dr. G
                        I'm stable, but not a miracle patient. Some of his kind of are. That's who I want to be.
                        Perhaps I need to track more and be more intentional about doing more.

                        I'm doing a lot right:
                        - no wheat, no dairy, almost no sugar
                        - organic produce at home
                        - avoid food sensitivities at home
                        - grass-fed / free-range / wild-caught meats
                        - got rid of known toxins in home

                        I need to:
                        - eat more greens
                        - drink more water
                        - be more intentional about resiliency strategies
                        - figure out a way to get rid of the "no-cebo" effect (opposite of placebo). I need to believe this is going to work.
                        - talk to Dr. G about all of this stuff

                        Other
                        - My In.Form health consultant
                        - My kinesiology / acupuncturist
                        - My peer counselor
                        I'll continue with these.

                        Complications
                        - toenail injury and long list of related problems. Lots of pain, multiple appointments wit PCP and podiatrist, unable to wear shoes for awhile, multiple rounds of anti-biotics (after natural methods failed), two outpatient surgeries. On the mend, but it affected my ability to exercise for months.

                        It had all been worth it. Stability with my MS is worth a lot; I'd been declining regularly before. I'm healthier, in general -- I've lost weight, my notoriously high cholesterol is significantly down, etc. But, I want more. I want to believe, and become "symptom-free". Dr. G says it is possible.

                        Next appointment: October 7
                        ~ 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


                          #27
                          Appt. #18, I think

                          Dr. G reviewed what I was still working on and how I was doing.

                          Originally posted by Mamabug View Post
                          Dr. G

                          I'm doing a lot right:
                          - no wheat, no dairy, almost no sugar
                          - organic produce at home
                          - avoid food sensitivities at home
                          - grass-fed / free-range / wild-caught meats
                          - got rid of known toxins in home
                          I'm still doing these things well. I'm also continuing on his Vitamin D protocol.
                          Originally posted by Mamabug View Post
                          I need to:
                          - eat more greens
                          - drink more water
                          - be more intentional about resiliency strategies
                          - figure out a way to get rid of the "no-cebo" effect (opposite of placebo). I need to believe this is going to work.
                          - talk to Dr. G about all of this stuff
                          We talked about most of this. I'd like to start tracking some of this again. It seems to help me to write things down on a chart; it keeps me more accountable to myself. However, I'm as busy as I want to be right now, and it requires time and self-discipline. However, I have printed out a tracking chart and look at it occasionally; that seems to help me remain focused on my goals.

                          Since I wrote these down:
                          • - I am (often, but not every day) concentrating on drinking more water. My goal is 60 oz per day; I'm often getting more like 40 oz.

                          • - I have added more greens. My goal is 3 servings per day. I'm doing more okra. Okra is highly recommended by THM (Trim Healthy Mama). I'm not on that diet and I don't aspire to be. But, they do eat fairly healthy, so I tend to "borrow" some of their ideas. Some days, I add a scoop of greens powder to a smoothie or water. I'm still not eating 3 servings daily.

                          • - I could work more on adding resiliency strategies daily. I am doing more yoga and I use some of the strategies at night to help me fall asleep quickly (mindfulness, "happy place", etc.). And I do activities with "right tribe" people. But, I should add more music (listening, playing piano, etc), more outdoor/sunshine time and I should start up my monthly movie nights with friends again.

                          • - I decided that I'm not going to worry about whether the "no-cebo" effect is an issue for me. My attitude is positive. I think that I believe this can work. Sometimes I'm frustrated that it's not following the time line that Dr. G predicated. But, mostly I'm grateful that I'm going in the right direction -- stability and occasional small improvements.

                          • - I'm getting more exercise than I used to. Some Silver Sneakers Classic, some chair yoga, some strength training, occasional recumbent bike.


                          Originally posted by Mamabug View Post
                          Other
                          - My In.Form health consultant
                          - My kinesiology / acupuncturist
                          - My peer counselor
                          I'll continue with these.
                          I'm still doing these. These are some of my "right tribe" activities. They make me feel good.
                          • - My In.Form consultant holds maintenance meetings once every two weeks. Usually 3-5 of us attend. We weigh in on a bio-tracker scale. We discuss our progress with our goals (diet, exercise, etc) and we are going through a book. We finished The Daniel Plan; now we're doing The Blue Zone Solution. I showed Dr. G my bio-tracker results. They were mostly OK, but he was impressed with my "metabolic age". My real age is 57; my metabolic age is 41. He says most people have a higher, not lower, metabolic age.

                          • - I also have a consultation with my consultant about once every 6-8 weeks. She does some kinesiology and a ZYTO scan. I place my hand on a hand cradle and the scanner reads what my body needs within its different systems and organ functions.

                          • - Alternating, also once every 6-8 weeks, I go to my kinesiologist. She also does kinesiology and does acupuncture too. They have very different methods. So, I like to alternate because I assume that maybe they each have their strengths and come up with things that I need that the other person may have missed.

                          • - I have a standing monthly appointment with my peer counselor. She's not a therapist. She's certified in peer support and is just a good listener; someone awesome to talk to.

                          • - As I mentioned earlier, I also have other "right tribe" people that I get together with.


                          Originally posted by Mamabug View Post
                          Complications
                          - toenail injury and long list of related problems.
                          Resolved.

                          4760
                          Last edited by Mamabug; 10-10-2019, 02:40 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


                            #28
                            By chance are you tracking the costs of all these appointments?

                            When I looked at functional medicine providers here the initial consultation was between $2500 and $6500 with additional appointments running $100s of per hour.

                            I could look again, but at the time I called half a dozen providers and they were all cost prohibitive. I also knew each of them would like on a variety of supplements that would further increase the costs. Sad...

                            Comment


                              #29
                              We all have to weigh costs against perceived benefits. I've decided that this is self-care. I believe that these practitioners help me to keep my MS stable.

                              My costs are significantly lower than the costs you cite.

                              - Dr. G charges $80 for a one-hour visit. There was no additional fee for the initial consultation. The charges include access by text between visits.
                              The IgG Food Sensitivity tests have an extra charge.

                              - My In.Form consultant, my kinesiologist/ acupuncturrist and my peer counselor are all very reasonably priced. Kinesiology and ZYTO scans probably save me money because they narrow down the number of supplements I take to those my body needs at the time.
                              Dr. G recommends a few supplements but he doesn't push them a lot. He mostly believes that food is medicine.
                              ~ 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


                                #30
                                Appt. #19

                                Dr. G -- functional medicine, Nov. 10 (Appt. #18)

                                - We talked some about some supplements recommended to me by my daughter, an RN, after she attended a workshop on alternative meds. I may consider adding one of two of them. Lately, I've been taking mostly a combination of what Dr. G and kinesiologist have suggested. I want to be careful not to let my supplement list get so long again, like it was a few years ago.
                                - Recommended seeing a chiropractor to see if a few adjustments could improve my hip flexor muscles. (See Dr. L notes below.)
                                - I received results from my 3rd IgG Food Sensitivity Test (June 2018, Feb 2019, Oct 2019). Improvements between the first two tests were small. Improvements on this test were significant. I have many more foods that I can eat, and much fewer sensitivities. This indicates that, even though I haven't seen a remarkable improvement in MS symptoms, I'm healthier now than I was 18 months ago.

                                Dr. L-- MS Specialist, Nov. 7

                                - I had an appointment this week with her. I admitted that, the past 4-6 months, I've cut back on my fx of my Copaxone. I'd previously had her OK to take it 2-3x per week, rather than 3x every week. But, I'd gone down to 1-2x, and lately often just once. She recommended that I either "fish or cut bait" (ie: stop vacillating and just do it, or discontinue). We both agree that, likely, my most recent MS flare and the newest MS lesions occurred in 2014. It's possible that Copaxone is no longer needed or effective. I'll think on it for the next 6-12 months. If I stop, Dr. L wants to 2 two MRI's, 6 months apart, followed by an annual MRI for the next four years.
                                - My MS has been mostly stable; I've seen small, incremental improvements in some things (balance, exercise stamina). I think that my strength in my leg (Dr. L determined that it was my hip flexor muscles, on both sides but quite a bit weaker on my right side) has decreased some. I talked with Dr. G about that.

                                Other
                                - My In.Form health consultant -- once every 6-8 weeks appointment, plus every two weeks In.Form Maintenance group
                                - My kinesiology / acupuncturist -- alternating 6-8 weeks. I might go occasionally to community acupuncture as well.
                                - My peer counselor -- once a month
                                I'll continue with these.
                                I'm still doing these. These are some of my "right tribe" activities. They make me feel good.

                                5986
                                ~ 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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