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    My journey with functional medicine, Part 2

    Appointments #1-11 (June through October, 2018) are here: https://www.msworld.org/forum/showth...49#post1514649
    I decided that the thread was long enough, so I'd start a new one. Now that we're finished going through his initial packet of info and have moved to monthly visits, it seemed like a good time.

    Appointment #12 was on Thursday, November 8.

    I had a month between appointments this time. Dr. G had usually been trying to schedule them one week apart, although sometimes my schedule didn't allow for that. Other times, I chose to stretch it to two weeks, simply because I felt like I needed more than one week to make the necessary diet and lifestyle changes.

    This time, Dr. G wanted to focus on what improvements I'd seen since my October visit. I'd reported a few minor improvements at my last visit. But, I'm not sure there were any additional improvements.

    I blamed it on my choices. About 2 or 3 weeks ago, for the first time since July, I ate gluten. I acknowledge that it was a choice, and I could have avoided it. I just didn't want to. Casa Betania is a "sister church" to First Mennonite Church, where I attend. We share some activities, such as our Wednesday evening Church Family Night, which includes a meal and classes. And, we share a building. They used to meet in our basement during our worship service. When they outgrew that, they moved their worship time to 4:00 pm and now they meet in our sanctuary.

    Anyways, on one Wednesday evening, it was Casa Betania turn to prepare and serve the meal. Our congregation always looks forward to that because they prepare absolutely awesome authentic Mexican food. And I had some.

    I tried to be somewhat "good":
    - I took a Food Enzyme before I went, to help my body digest it better.
    - I chose to have mine without cheese, since I am also supposed to avoid dairy.
    - And, I didn't have any dessert, since I am also supposed to avoid cane sugars.

    But, after a day or two, I noticed that I was having more mobility issues and it didn't get back to normal for almost a week.

    I was actually sort of glad that I had that experience. Although I'd seemed to be experiencing some minor improvements on this diet, I really still wasn't sure how important it might be. I can live with experiencing some short-term additional symptoms now and then, if I would choose to "cheat". But, it seemed like this also delayed my progress / healing.

    Dr. G also had the same opinion. That it was OK that I'd experienced this because I had the opportunity to learn from it.

    We also talked quite a bit about drinking water. We've been using a Brita pitcher for a few years already. And, after we purged our kitchen of a lot of plastics, we pour our filtered water into a glass or stainless steel container after it is filtered. But, during our conversation, we realized that we needed to look into whether our filter also filtered out the flouride in the water. And, it was a reminded to hubby to change the 20-year-old filter on the ice maker on the refrigerator.

    So, this week, we ordered a different water filtering option that also filters out flouride. And, he ordered a replacement filter for the refrigerator. We should have done those things months ago, probably, when we were making lots of other changes.

    To prepare for the next appointment, Dr G wants we to focus, again, on looking for improvements in my symptoms. Specifically:
    - stamina, energy
    - length of time that I can stand
    - quad strength
    - changes in use of cane
    - naps
    - balance

    Dr. G thinks that I walk faster, now, than I did back in June and that I seem to rely less on the cane. Hubby and I aren't sure that's accurate, but, maybe it is. We live with my symptoms daily; Dr G might be more likely to notice changes when he observes me less frequently.

    Next appointment: Monday, December 10
    ~ 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.

    #2
    I neglected to mention that I've been dealing with a UTI, off and on, this week.

    In the past, I used to get them once or twice a year. I probably haven't had one, though, for about 10 years. I'm not sure what triggered it this time.

    Also, in the past, UTI's used to trigger an MS flare every time. And, that was back in the years before I was on Copaxone, which has managed my MS and its flares much more effectively than Betaseron did for me. This time, I had no flare, which was really good news. I haven't had an MS flare for over four years.

    I've been treating this UTI naturally. Dr. G practices what he calls "concierge medicine" and being his patient offers the opportunity to text him with questions whenever I want. He's usually fairly good at responding in a fairly timely manner. So, he's been advising me on how to treat my UTI. I've also done a lot of Dr. Google for additional suggestions.

    Dr. G recommended mostly Uva Ursi. Initially, before the symptoms included urge and inability to pee, I didn't recognize what was going on, so he also offered suggestions for symptoms for back ache, etc. Ideas included mega-doses of Vitamin C, and higher doses of Omega 3 than usual.

    I also added D-Mannose and ACV (apple cider vinegar) to my treatment regime.

    So, that was something else we talked about at my November 8 visit.
    ~ 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


      #3
      How are you ingesting the ACV- straight up?

      Comment


        #4
        Originally posted by Temagami View Post
        How are you ingesting the ACV- straight up?
        No; that would be way too strong. Most days, I put 1-2 T. in a 24-28 oz smoothie, and I can barely taste it.

        On my UTI days, I also drank an extra T. once or twice a day in a glass of water. Doesn't taste very good, but it's do-able. I used to drink it in a glass of tomato juice or V8 juice. That helps a little.
        ~ 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


          #5
          Appt. #13

          Appt. #13 was December 10.

          - Dr. G asked about how I managed with my diet at Thanksgiving. I, actually, did really well. I attended a large family reunion. There were just over 100 people there. There are 700-800 living direct descendants of my husband's great-grandfather. They get together every year for a large carry-in for Thanksgiving dinner at noon; it used to be annually, but they changed it about 10 years ago. So, it includes my husband's first and second cousins and aunts and uncles, my father-in-law's (FIL) cousins, etc.

          It is generally just those that live in the south-central Kansas area who attend, although a few of my husband's cousins and their families from other states did attend this year (Texas, NM, CO, MI, PA).

          Anyways, how did I do with eating? Great. I was able to eat turkey. I brought a vegetable dish that I could eat. And, there were two or three other healthy vegetable dishes that worked for me, including sweet potatoes that weren't smothered in marshmallows or brown sugar.

          There are a number of Type I diabetics in the family of one of my FIL's cousins. I anticipated that they would be some sugar free desserts, but, I correctly guessed that there would not be any gluten free ones. And, pumpkin pie has dairy, so that wouldn't work for me, even if the crust was gluten free.

          So, I found a recipe on-line for gluten / dairy /sugar free pumpkin pie. I brought one piece along, just for me. It was pretty good. I bought a gluten free pie crust from Natural Grocers. I used coconut milk instead of dairy, and honey instead of sugar. I left the meal not feeling deprived at all.

          - We also talked a lot about some symptoms I'd been having, off and on, for over a month. Originally, I thought it was a UTI, but that was ruled out. I'd tried treating it naturally, with supplements, for quite awhile, but it hadn't gone away for a few weeks. My symptoms finally had discontinued, but then re-started a week or so later.

          So, he looked at the ingredients on some of my supplements, etc. He tried to figure out what I might be sensitive to that could be causing it. He gave me some testing sticks and instructions to test my own urine at home, and told me if they weren't normal, that I needed to go to a lab and get a UA.

          We also talked a lot about the high-dose Vitamin D protocol that he put me on, and whether that could be playing into it. I'm currently sort of on the fence about whether I want to continue on it.

          We didn't set our next appointment yet; he wanted to wait to see how this worked out.
          ~ 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


            #6
            Update

            Here's an update on my symptoms. It's not really related to Dr. G, other than I'm keeping him updated.

            I could have taken a UA sample in to the lab he works with in Wichita, but it was easier to call my PCP doctor here in my community. They found an infection. I wish I'd asked more questions, but I assume it was a kidney infection, based on the symptoms I was having. I'm currently on an anti-biotic for it, so I should be better in a week or so.
            ~ 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


              #7
              Another Update

              This is also not related to Dr. G. I continue to keep him updated.

              My PCP thought I had a kidney infection, not a UTI as I had originally suspected. They treated me with a round of anti-biotics; it didn't clear up. They did a second UA and treated me with a second anti-biotic; it still didn't clear up.

              Although my PCP believed that the abnormal UA's indicated a kidney infection, he also believed something additional must be going on. He ordered a CAT scan to look for possible kidney stones. CAT scan came back clear. He referred me to a urologist.

              My urologist appointment was yesterday. He said that, although my previous UAs were abnormal, they had not been indicative of a kidney infection, as my PCP had believed.

              He did another UA yesterday. Although it was improved from the 2 UA's done at my PCP office, it still wasn't normal. He suspects some kind of bladder inflammation -- possibly IC (interstitial cystitis). It appears IC is manageable but not curable.

              He gave me some diet suggestions and a med (Vesicare) to try. Their office will follow up with a phone call in three weeks to see if med is making a difference.

              So, I have been feeling somewhat better, although not normal. Mostly, my remaining symptoms include getting up 4-8x per night to try to void. I usually can now, so that is improved. And, it used to be 7-8x per night, so that is also improved. Sometimes, my stomach still feels unsettled.

              I'm not sure what I hope for. I think that, if the med works, maybe he'll be able to diagnose IC? I'm not sure if having a dx that is incurable is a good thing (because I'll at least have a dx and it can be treated and managed), or a bad thing (because then I have to deal with another incurable illness).


              479
              Last edited by Mamabug; 01-03-2019, 04:32 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


                #8
                Mamabug, I'm sorry you are having urinary problems, as you know I can relate somewhat. I hope the Vesicare helps. It's rough having to get up at night so many times.

                I hope you feel better soon.
                God Bless Us All

                Comment


                  #9
                  Thanks, Reg. I hope so too. This has been a long haul. And, if it's what the urologist suspects, it sounds like it isn't curable. If it's that, I hope I can find a way to manage it well. These past two months have been horrific.
                  ~ 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


                    #10
                    Mamabug - I'm sorry your problems aren't going away sooner than you had hoped for.

                    About 15 or so years ago, I was having some urinary problems and thought I had a uti. I too had to pee frequently and it was painful. But, tests came back negative, so I went to a urologist who dx me with IC and said I'd have it the rest of my life (it being incurable). The Dr. performed a Cystoscopy procedure where the he inserted a thin tube with a tiny camera through the urethra which showed the lining of my bladder.

                    He also inject water into my bladder to measure the capacity called hydrodistention. This was a horrible experience for me as it caused the lining of my bladder to tear and required a hospital stay. I have since blacked out what was done, but was in much more pain! (He later told me he was sorry and didn't realize that I have a small bladder)

                    Well, I'm relating this story because and after about 5 months, all symptoms disappeared and have never returned!! And much later, after a visit with my neuro where I explained this horrendous ordeal, I was told it sounded that a bad MS flare was a much more likely culprit.

                    Maybe it's not IC after all and just a nasty flare up like what I went through? I did go to an herbalist and got a blend of teas that did help calm things down some, but all I can remember is that it contained marshmallow root and urvi ursa among other herbs.

                    I hope that you feel better
                    1st sx '89 Dx '99 w/RRMS - SP since 2010
                    Administrator Message Boards/Moderator

                    Comment


                      #11
                      Thanks, Seasha. Yeah -- I don't know if the meds are helping. It was supposed to take two weeks for me to notice any change. My symptoms are improved from before my appointment, but it's really too soon for the med to be the reason for improvement. And, things haven't continued to improve; they are just sort of better-than-before, but stagnant.

                      Next Dr. G appt -- Thursday, January 17

                      608
                      ~ 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


                        #12
                        Appt. #14

                        My appointment was on Thursday last week.

                        We talked about my kidney / bladder symptoms over the past two months. I had initially wondered if the Vitamin D protocol that Dr. G had put me on could be creating Vitamin D toxicity and causing those. So I had discontinued my high Vitamin D dose and went back to 5000 mg / day.

                        But after the urologist (Dr. N) dismissed kidney problems and thought it was related to bladder, I had re-started the higher dose.

                        Dr. G was as perplexed as I am as to what is going on, but it's not his job to dx and treat. I'm working with him on other goals. He was also, though, pleased that, although my symptoms are not totally gone, I'm feeling much better. He was glad to hear that I'm resuming exercise and some of my resiliency strategies. For a good part of the past two months, I didn't feel up to doing much.

                        He was also pleased to hear that, although I'm felt some decline in ability during those months, that has all returned. He wants me to continue to work on his overall protocol. He mostly emphasized diet, removing environmental toxins, and practicing resiliency strategies. I looked back at my handouts, and his protocol also includes:
                        • food
                        • movement
                        • immunity
                        • breathe
                        • stress
                        • hydration
                        • hormones
                        • purpose

                        I guess I've mostly continued to do those things, even the past two months. Especially the dietary recommendations (food), and the toxins. I did experience considerably more stress while I was feeling bad, however,. Although I tried to utilize some resiliency strategies, it seems that I almost have to feel "well enough" to do those strategies that help me feel "better". It's kind of a catch-22. But, I did some, although certainly not as many as I wanted to.

                        I also saw my kinesiologist (CG) last week. In the past, I went only occasionally for kinesiology and somewhat more regularly for acupuncture. In the past 3 months, I've been going regularly -- once every 3 weeks -- for kinesiology. I do think that some of her supplement recommendations helped (sometimes a little, other times more significantly), with managing the bladder symptoms I was having. This visit, she indicated that my "systems" were much healthier and she gave fewer recommendations for supplements.

                        Today, I have an appointment with M, a peer counselor. I've been going to her once a month, just because she's an awesome person and I always feel good after having a visit with her.
                        ~ 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


                          #13
                          Update 02/11/2019

                          1. Dr. G, functional medicine / clinical nutrition
                          Next appointment with Dr G is scheduled for March 14. He wants to re-test (IgG food sensitivity) 9-12 months after my initial test. It was done in June.

                          My son usually plants a garden every spring. He might want to start some plants indoors, soon.

                          I'll check with Dr G to see if he can do the test a little early so I'll know what vegetables to recommend that my son plant.

                          2. Dr. Lynch, MS Specialist
                          I had my 6 month MS specialist appointment today. In her neurological exam, nothing was worse than 6 months ago. And my walking was a little faster. That might be related to my dietary and lifestyle changes. Or it might have been just a good day. It's hard to know.

                          She seemed a little less negative about Dr G and his functional medicine.
                          - Last time, she called it "hooey" and thought "getting rid of entire food groups" could have a negative impact on my health.
                          - Today, she just said that, although she didn't agree with it, it didn't seem dangerous.

                          I tend to think that remaining stable can be attributed to my functional medicine changes. I am hopeful that, in 6 months, I will see more improvements and that might more clearly suggest that my changes are effective.

                          3. Dr. N, urologist
                          Urinary problems seems gone. Urologist thought it was a bladder, not a kidney issue -- possibly IC -- Interstitial cystitis. It doesn't seem to be that. It had started to clear up on its own, prior to that appointment. It continued to improve, before the med (Vesicare) was supposed to have begun to become effective. Their dietary recommendations did not seem to make a difference. During a follow-up phone call, their office said I could try going off the med after 4 weeks, which I did, and things have not become worse again. My symptoms seem pretty much at my personal "normal" -- up 1-2x per night to use bathroom.

                          I guess it just cleared up on its own. The whole 2 or 3 month ordeal remains sort of a mystery, since UTI and kidney problems were ruled out and anti-biotics didn't work.

                          947
                          ~ 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


                            #14
                            Health strategies / resiliency strategies

                            1. Started seeing a health consultant a few weeks ago. Had a free consultation, and today was my second appointment.

                            My current goals are to drink more water. Last week, I'd thought I was averaging 40 oz daily but I realized it was only 30. So I worked on increasing and I'm about up to 40 now. I'll keep trying to increase gradually.

                            Second goal is adding strength training to my weekly exercise routine.

                            Her special scale indicated that I was more hydrated, had lower body fat and more muscle weight than last week.

                            I also see a kinesiologist regularly for kinesiology and acupuncture, and a peer counselor just because I love visiting with her.

                            2. Had a follow up to my June IgG Food sensitivity test today. Will be a few weeks before I have results. I am hopeful that I will have fewer restricted foods.

                            3. I try to include some meditation, yoga, listening to calming music, playing piano, participating in social activities every week. Today, I attended the first meeting of an 8 week "My Purpose" group. It's kind of a personal mission statement setting group.
                            ~ 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


                              #15
                              Originally posted by Mamabug View Post
                              1. Dr. G, functional medicine / clinical nutrition
                              Next appointment with Dr G is scheduled for March 14. He wants to re-test (IgG food sensitivity) 9-12 months after my initial test. It was done in June.

                              My son usually plants a garden every spring. He might want to start some plants indoors, soon.

                              I'll check with Dr G to see if he can do the test a little early so I'll know what vegetables to recommend that my son plant.

                              2. Dr. Lynch, MS Specialist
                              I had my 6 month MS specialist appointment today. In her neurological exam, nothing was worse than 6 months ago. And my walking was a little faster. That might be related to my dietary and lifestyle changes. Or it might have been just a good day. It's hard to know.

                              She seemed a little less negative about Dr G and his functional medicine.
                              - Last time, she called it "hooey" and thought "getting rid of entire food groups" could have a negative impact on my health.
                              - Today, she just said that, although she didn't agree with it, it didn't seem dangerous.

                              I tend to think that remaining stable can be attributed to my functional medicine changes. I am hopeful that, in 6 months, I will see more improvements and that might more clearly suggest that my changes are effective.

                              3. Dr. N, urologist
                              Urinary problems seems gone. Urologist thought it was a bladder, not a kidney issue -- possibly IC -- Interstitial cystitis. It doesn't seem to be that. It had started to clear up on its own, prior to that appointment. It continued to improve, before the med (Vesicare) was supposed to have begun to become effective. Their dietary recommendations did not seem to make a difference. During a follow-up phone call, their office said I could try going off the med after 4 weeks, which I did, and things have not become worse again. My symptoms seem pretty much at my personal "normal" -- up 1-2x per night to use bathroom.

                              I guess it just cleared up on its own. The whole 2 or 3 month ordeal remains sort of a mystery, since UTI and kidney problems were ruled out and anti-biotics didn't work.

                              947
                              Congratulations on the clearing of your urinary issues and being able to go off a med. It gives hope that you regimen is helping to at least relieve some symptoms.
                              All the best, ~G

                              Comment

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