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  • #31
    Originally posted by thwilson View Post
    Thanks for all the information. It's a lot to take in. Can you explain a little more about the magnesium supplements? Are you recommending malate and citrate in conjuntion? How is this advice impacted by the level of magnesium in her blood (normal, low etc.)?

    I recommend supplementing with either magnesium malate or magnesium citrate. Her symptoms indicate a magnesium deficiency to begin with, so part of the reason for the recommendation is to increase her magnesium levels. But not all magnesiums work equally. Magnesium oxide for example is crap. It is poorly absorbed, neutralizes the stomach acid and works as a laxative by burning the intestinal wall. Magnesium chloride ("magnesium oil") is safer and better absorbed but is less effective in elevating ATP, which is essential for fibromyalgia, than magnesium malate or citrate. Magnesium malate though is the more effective of the two though and provides other benefits such as the malic acid dissolves uric acid.

    You were asking another poster about the difference between D2 and D3 in an earlier post and I would like to answer that really quick. D2 is inactive D. This is what is often added to milk and cheap vitamin supplements, but does virtually nothing for the body. It can be converted in to inactive D3 though by the liver if the liver is functioning properly. Inactive D3 is also the form of D3 commonly used in higher end supplements with vitamin D. This is because active D3 is outrageously expensive. Last I checked the raw material was over $600.00 per kilo. Inactive D3 though can be converted in to active D3 by the kidneys if the kidneys are functioning properly.

    Vitamin D is important for a lot of tings including calcium absorption and immune regulation. It is essential though not to overdo it as too much vitamin D can cause problems such as elevated serum calcium that can lead to muscle cramping/spasms, high blood pressure, constipation, brain fog, weakness, etc.

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    • #32
      Can you explain the reason behind D3 being better than D2? I looked for literature and it was not conclusive. Is the distinction important for those with arthitic issues only?
      D2 has been shown to cause spikes in circulating D levels followed by dramatic drops in D. D3 goes up and stays up more consistently.

      What do you mean by topical? Do you apply it to the area of pain, or like a bath oil?
      Yes, there are magnesium sprays that you just apply to your skin - either in the area of pain or just on any place you want and it will be absorbed. You can also use it in the bath - or you can use epsom salts in the bath.
      Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

      http://www.krispin.com/lectin.html

      Comment


      • #33
        I would strongly suggest you contact Chris Kresser and seek a consultation with him, he has helped lots of folks who are about as messed up as your wife. At this rate, what do you have to loose?

        http://chriskresser.com/

        Comment


        • #34
          Originally posted by Karma View Post
          I would strongly suggest you contact Chris Kresser and seek a consultation with him, he has helped lots of folks who are about as messed up as your wife. At this rate, what do you have to loose?

          http://chriskresser.com/
          I heard he is no longer taking new patients. Is that not correct?
          Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

          http://www.krispin.com/lectin.html

          Comment


          • #35
            My husband and I also have/had a collection of seemingly random health problems that are mysterious...it seems like we're constantly getting pieces of a puzzle but can't see the whole picture, so I can sympathize that this situation must feel really overwhelming, but don't give up! I don't have any definite answers, but I can share some things that have helped us, and some insights we've gathered.

            I'm a 33 year old woman, and my husband is 29. I'm diagnosed with MS, he's got psoriatic arthritis in his knees that affects his daily life, and at times an be crippling. We both suffer from extreme fatigue. I had IBS-C for years, but anytime I told a doctor I was diagnosed with MS, they basically said the IBS was due to the MS, and I'd just have to deal with it. Same for the fatigue. I've been convinced that I've been hypothyroid for like 20 years, because I have all the symptoms, but every blood test comes back totally normal. Also convinced I have some kind of adrenal issue. The list goes on and on, it's like going down the rabbit hole.

            Both my husband and I have been researching health issues like crazy, and over time, 2 big ideas seemed to emerge:

            1) STRESS / SLEEP
            2) GUT HEALTH

            Originally, I had been told and read that autoimmune issues CAUSE fatigue and poor sleep quality, but the deeper I dug, the more evidence I found that poor quality/not enough sleep more likely CAUSES or contributes to autoimmune and health issues. Once those issues begin, they often reinforce poor sleep quality, and it becomes a vicious cycle. It can take a really long time for the body to recover from a cumulative sleep debt. I find that even when I sleep for 8-9 hours, I usually wake up more exhausted than before I went to sleep. The body views sleep deprivation as a stressor. Both my husband and I have a history of dysfunctional sleep - years of insomnia that likely played a big role. We both also have a history of extreme stress due to family, relationship, and work issues. Not coincidentally, the personal stress was immediately followed by sleep dysregulation, which led to symptoms of autoimmune activity.

            Anything you can do to improve sleep quality is a priority. I find that taking 2 Benedryl generally help me reach a deep sleep, and benedryl is pretty safe as far as medicines go. Only down side is tolerance will develop if you take it chronically, so I try to not take it more than 2x/week. Some people find that supplements like magnesium before bed or melatonin help them sleep, other people find that a carby dinner works well...now is the time to experiment and find some things that promote good quality sleep.

            I don't know if your wife drinks alcohol, but even just one glass of wine in the evening can negatively impact sleep, making it shallower and less restorative. Here's a great article on this:

            http://www.sciencedaily.com/releases...0815162220.htm

            Here is a great article on the connection between sleep/stress/immune response:

            http://www.medandlife.ro/medandlife366.html

            I really like to listen to The Meditation Podcasts from this site on my headphones - I used one last night when I was having trouble falling asleep and it really helped. It uses binaural beats to enhance Theta brainwaves, which promotes healing, cellular regeneration, learning, and a sense of peace. I don't know how effective those binaural beats are, but I always feel sooooo relaxed after listening. you can download the podcasts (I usually listen to #14: Rejuvenating Sleep) for free using itunes:

            http://www.themeditationpodcast.com/episodes.html?ep=14

            Digestive health also seems to play a major role in many SEEMINGLY unrelated health issues.

            As I mentioned before, i had IBS-C for years. It was intermittent, and actually got signifiantly worse when I cut grains and sugar from my diet and ate 100% paleo. I couldn't figure out why the heallthier and cleaner i ate, the worse my IBS got. Then, I found Fiber Menace, and together with some other information, cured my IBS over the course of several months.

            At first, I was a little confused by the gut sense site, because I couldn't find anywhere a list of what to eat/not eat. After reading the book, I realized that he doesn't specifically say that you have to eat or avoid foods, it's more about avoiding fiber in general. He recommends keeping fiber around 10g/less, but as close to zero as possible if you are suffering from an acute problem. (The book, Fiber Menace goes into more detail on different types of digestive disorders, so you might find it helpful to read since I mainly focused on the IBS-C related stuff.)

            ***you mentioned that she has IBS, but didn't specify if it was with constipation or diarrhea. If she suffers from constipation, I HIGHLY recommend using Hydro-C (which can be ordered from the gutsense website). If she has diarrhea, be careful with supplements that are in the CITRATE (citric acid) form. My husband is prone to diarrhea and has a very sensitive digestive system, and he tends to get diarrhea if he takes anything in this form. Similarly, if he takes vitamin C, it must be in small doses, and he has to make sure not to eat too much fruit at a time.

            The author of Fiber Menace also suggests taking L-glutamine, which is an amino acid that is critical for general body repairs after surgery/injury/infections, and is especially critical for repairing intestinal damage.

            To get my gut in working order, here's what I did:
            1) probiotics, cultured/fermented foods
            2) L-glutamine every morning for 2 months
            3) Eat VERY low fiber (no more big salads, in general not a lot of vegetables except for peeled, deseeded cooked stuff)
            4) Some good quality saturated fat.

            Here is another great site I found very helpful:

            http://gutflora.com/



            I've been reading a lot about chronic fatigue, because it's something that I've been struggling with, but again, since I have an MS diagnosis, doctors won't diagnose or treat CFS in me (not that they know much about CFS, anyway.) Here are some interesting links about CFS and the methylation cycle - there are suggestions for some some supplements to try to improve fatigue:

            CFS - The Central Cause: Mitochondrial Failure - DoctorMyhill

            CFS - The Methylation Cycle - DoctorMyhill


            My stance on diet is that is really helps some people and makes a HUGE difference, and for other people it has zero effect. I started making dietary changes about 5 years ago when I had my first MS symptom. I continued to have symptoms, but overall they were relatively mild. I haven't had any flares or lesions in the past 2 years, which is likely helped by eating paleo (no dairy, gluten, soy) but I actually think my improvement is more related to some major life changes I made 2 years ago. No way to know.

            Unfortunately, eating paleo/primal has actually made me feel worse in some ways - it worsened my IBS (too much fiber!) and my fatigue got worse to the point of it being crippling. Also, eating paleo coincided with my normal lowish blood pressure becoming way too low, to the point that I had trouble standing without getting dizzy. (Low blood pressure could have been contributing to the fatigue, also). Upon reintroducing significantly more carbs+sugar (white/seet potatoes, white rice, juice, honey + cane sugar, my blood pressure is back to the previous lowish normal that it used to be, and I don't have issues with it anymore. In fact, in the past 2 months I've been eating lower fat, high carb+sugar, and have made significant improvements. My husband's autoimmune issues are not affected AT ALL by his diet, we've been able to determine that all his flares are due to stress/poor sleep. So, I think diet is an important thing to experiment with, but it's not the solution for everyone with health issues, sadly.

            ***I'm assuming your wife has been tested for B12 levels, which can cause some of the neurological issues you mentioned.

            Another link I recommend checking out is:

            http://raypeat.com/articles/

            On this forum, Ray Peat is somewhat controversial, and I initally wasn't sure what to make of him, but he has written some really fascinating artlcles on the dangers of excess serotonin, estrogen and how it's linked to depression, inflammation, neurological issues, and a host of other maladies. I've taken information from him to change my paleo diet, and now that I have, I am feeling like a new person. I don't embrace everything he says is beneficial (like dairy), but he does have some good info that has actually helped me to feel better.

            Also, some supplements I would suggest researching:
            1) LDN (Low Dose Naltrexone, which seems to be a godsend for so me people with some health issues, but didn't do much for me or my husband.)

            2) Pregnenolone and DHEA - since it seems that your wife has some hormonal issues and some arthritis/inflammation issues. These hormones are important for a millioin different things - neurological, hormonal balancing, anti-inflammation (pregnenlone was originally studied for it's anti-arthritis properties but was eclipsed by the discovery of cortisone and then forgotten). There is some discrepancy about whether higher doses of pregenolone are safe. I've been taking 100mg/day (with periodic breaks) and I think that overall it is contributing toward my improvement.
            Last edited by BestBetter; 09-05-2012, 09:45 AM.

            Comment


            • #36
              I'm sorry to hear your wife has it so bad right now.

              I also want to chime in with a Whole30 recommendation. Like primal, but stricter (no dairy, plus it's 100%, not 80/20). Most people doing a Whole30 don't start to feel great until a few weeks in. Cutting something (like dairy) out for a week was probably not enough to make a difference. Same with gluten grains, the damage from which can hang around in your system for awhile (weeks?) after ingestion. It might be that dairy isn't an issue for her, but most likely it's that it wasn't removed long enough.

              The Whole 30 is intimidating, but there is support out there. They have forums and also a FB page. I was already grain free for a year and sugar free for a month when I did the Whole30 and I *still* had positive results in my health. I didn't do the whole auto immune program, but did cut eggs because I suspect I have problems with them and want to confirm that.

              The Whole30 autoimmune plan (cutting eggs, nuts, nightshades) might be what she needs but you know, even if she has to work up to that, I bet she will get results just from the regular Whole30.

              I really recommend she consider it. But talk to others first. The first few weeks tend to be hard, with headaches, cravings and just generally being really, really pissy. Knowing that others went through it does help.

              It Starts With Food was very helpful. All the information is on the site but you have to look. In the book it's easier.

              Whatever you two decide to do, good luck

              Comment


              • #37
                Originally posted by BestBetter View Post
                Anything you can do to improve sleep quality is a priority. I find that taking 2 Benedryl generally help me reach a deep sleep, and benedryl is pretty safe as far as medicines go. Only down side is tolerance will develop if you take it chronically, so I try to not take it more than 2x/week. Some people find that supplements like magnesium before bed or melatonin help them sleep, other people find that a carby dinner works well...now is the time to experiment and find some things that promote good quality sleep.

                I don't know if your wife drinks alcohol, but even just one glass of wine in the evening can negatively impact sleep, making it shallower and less restorative.
                She takes heavy duty prescriptions for sleep. I think the magnesium supplementation sounds really promising, I'd like to try that. She does not drink.

                Originally posted by BestBetter View Post
                Digestive health also seems to play a major role in many SEEMINGLY unrelated health issues.

                To get my gut in working order, here's what I did:
                1) probiotics, cultured/fermented foods
                2) L-glutamine every morning for 2 months
                3) Eat VERY low fiber (no more big salads, in general not a lot of vegetables except for peeled, deseeded cooked stuff)
                4) Some good quality saturated fat.
                Thanks for this alternative protocol. Did you start the probiotics on day-1? Did you have a worsening of symptoms before they got better? How long until you saw improvements?

                Originally posted by BestBetter View Post
                Unfortunately, eating paleo/primal has actually made me feel worse in some ways - it worsened my IBS (too much fiber!) and my fatigue got worse to the point of it being crippling. Also, eating paleo coincided with my normal lowish blood pressure becoming way too low, to the point that I had trouble standing without getting dizzy. (Low blood pressure could have been contributing to the fatigue, also). Upon reintroducing significantly more carbs+sugar (white/seet potatoes, white rice, juice, honey + cane sugar, my blood pressure is back to the previous lowish normal that it used to be, and I don't have issues with it anymore. In fact, in the past 2 months I've been eating lower fat, high carb+sugar, and have made significant improvements. My husband's autoimmune issues are not affected AT ALL by his diet, we've been able to determine that all his flares are due to stress/poor sleep. So, I think diet is an important thing to experiment with, but it's not the solution for everyone with health issues, sadly.
                She has very low blood pressure. Good to know this can be a risk with the low-carb stuff.

                Comment


                • #38
                  Originally posted by thwilson View Post
                  Thanks for this alternative protocol. Did you start the probiotics on day-1? Did you have a worsening of symptoms before they got better? How long until you saw improvements?
                  I initally started with only probiotics (before I knew about the gutsense site, I was trying to do the GAPS diet, so I was following that for while, but it was way too restrictive for me). The probiotics alone didn't help - in fact, one brand I tried which was a super high dose/multi-strain made my bloating unbearable. I backed off the probiotics for a while, resigned myself to a life of misery and IBS pain...

                  Then, I found the gutsense info, then basically started my protocol doing all of those things at once. It seriously took months before seeing an improvement...I almost gave up a month into it, thinking there was just no hope for me, but I persevered and after about 2-3 months I started making steady progress. Digestive system disorders take YEARS, sometimes DECADES, to develop, which means that healing them takes a long time.



                  Originally posted by thwilson View Post
                  She has very low blood pressure. Good to know this can be a risk with the low-carb stuff.
                  Her fatigue could even be something as simple as a low blood pressure issue. Getting it as close to normal should also be a priority, though for her normal will likely always be on the low side (if it's due to low blood volume).

                  For example, for me, pre-Paleo, my blood pressure was always around 110/70. After going low carb paleo/primal, it was consistenly around 90/60, sometimes lower. Now, I've got it back up to 105/65, and that little bit makes a huge difference in how I feel, even though it's still on the low end.
                  Last edited by BestBetter; 09-05-2012, 10:32 AM.

                  Comment


                  • #39
                    Originally posted by thwilson View Post
                    She takes heavy duty prescriptions for sleep.
                    Is she taking some type of benzodiazepine? Benzos work well for insomnia when used sparingly, but there's no research that shows they improve sleep quality (even though they increase sleep duration). In fact, the only research I've been able to find on benzos points to them having a negative effect on sleep quality.

                    Also, how long has she been taking these (and is it every night, or only occasionally when needed?)

                    When my husband or I sometimes need to use some form of benzo, we use Triazolam, which is fast acting and has a short half life, so no grogginess the next day. But after taking it, neither of us feel particularly rested (though it's waaaaaay better than being awake all night!)

                    Comment


                    • #40
                      I don't know how alternative and weird your looking to get as far as help/relief. But I see your in Arizona and the Infamous " Challen Waychoff" of "RBTI," has a son who lives in Arizona and he is currently a practicing Chiropractor with his wife. I know he can "test" you, if your looking to go the RBTI route.... it's not for everyone and you can do your research but I do have some family members who have gone that route and have learned a lot and have improved their health.

                      http://valleywidehealthcenters.com/d...ierce-waychoff

                      Comment


                      • #41
                        One more thing - you mentioned misplaced discs/back pain.

                        I highly recommend that she goes to a chiropractor who specializes in ART (Active Release Technique). The sessions shouldn't be expensive (my initial visit was $80, but it was an hourlong appt, and follow-ups were $40.)

                        In my experience, ART trained chiropractors have been more helpful and don't just give a quick adjustment then send you on your way (I had other chiros like this).

                        This website is a good place to learn more about it and find chiropractors who are trained to do it:

                        http://www.activerelease.com/about.asp
                        Last edited by BestBetter; 09-05-2012, 11:39 AM.

                        Comment


                        • #42
                          I havent read through the whole post and if I am repeating others advice I apologize. I have had similar symptoms on a smaller scale for years. In April I gave up all grains and went low carb. Started to get better but it was hit and miss. I finally found a functional medical practitioner in my area who diagnosed me with yeast in the gut. I have been taking an anti fungal and am slowly improving. Sometimes it is a process. You can go tot his website and search for an FMP in your area. I would further research to make sure they are credible. Institute for Functional Medicine > Home

                          Don't quit. I believe the body was created with the ability to heal. It is just finding the right practices. Prayers and love sent y'alls way.
                          You know all those things you wanted to do: You should go do them.

                          Age 48
                          height 5'3
                          SW 215 lbs
                          CW 180 lbs (whole foods/primal eating)
                          LW 172 lbs
                          GW 125ish lbs

                          Comment


                          • #43
                            Originally posted by valmason01 View Post
                            I havent read through the whole post and if I am repeating others advice I apologize. I have had similar symptoms on a smaller scale for years. In April I gave up all grains and went low carb. Started to get better but it was hit and miss. I finally found a functional medical practitioner in my area who diagnosed me with yeast in the gut. I have been taking an anti fungal and am slowly improving. Sometimes it is a process. You can go to this website and search for an FMP in your area. I would further research to make sure they are credible. Institute for Functional Medicine > Home
                            Thanks, there are about 20 in town, I'll check these out more. The Functional Medicine description is appealing and seems likely to be a better match than the range of specialists all working in isolation.

                            Comment


                            • #44
                              Originally posted by BestBetter View Post
                              Is she taking some type of benzodiazepine? Benzos work well for insomnia when used sparingly, but there's no research that shows they improve sleep quality (even though they increase sleep duration). In fact, the only research I've been able to find on benzos points to them having a negative effect on sleep quality.

                              Also, how long has she been taking these (and is it every night, or only occasionally when needed?)

                              When my husband or I sometimes need to use some form of benzo, we use Triazolam, which is fast acting and has a short half life, so no grogginess the next day. But after taking it, neither of us feel particularly rested (though it's waaaaaay better than being awake all night!)
                              Either eszopiclone or sodium gamma-hydroxybutyrate every night. Otherwise, no sleep at all.

                              Originally posted by BestBetter View Post
                              Her fatigue could even be something as simple as a low blood pressure issue. Getting it as close to normal should also be a priority, though for her normal will likely always be on the low side (if it's due to low blood volume).

                              For example, for me, pre-Paleo, my blood pressure was always around 110/70. After going low carb paleo/primal, it was consistenly around 90/60, sometimes lower. Now, I've got it back up to 105/65, and that little bit makes a huge difference in how I feel, even though it's still on the low end.
                              Lower blood pressure days are definitely worse for fatigue. Her normal is 90/65. The blood pressure increasing advice (eat salt and celery) has not made any difference. What worked for you?

                              Comment


                              • #45
                                There's a lot of good advice here. But it does sound like you have some concerns about compliance with really strict protocols. After everything she's been through, I wouldn't blame her for being exhausted at the idea of trying something new.

                                Just a suggestion, but the first and most important thing is probably just to get your wife to stop eating wheat and other grains. Chances are, if she can cut all grains for a month, she's going to see some improvement in SOMETHING. Most likely the initial improvement will be seen in any lingering GERD, IBS, stomach/intestinal issues she may have. And that will build a foundation of trust in nutritional healing that you can use to encourage her to make other changes.

                                After that, if you can get her to remove seed oils like canola, sunflower/safflower, soybean oil from her diet at the same time, she'll probably see even more improvement. You can substitute olive oil or coconut oil in almost all cooking or dressing situations and actually improve the taste of her food. This is a really simple change that will have a huge effect, and won't make her feel deprived.

                                Since she seems to be all right with supplements, I would suggest a good quality fish oil supplement as well.

                                Each of these three things will help your wife a lot with systemic inflammation, and that can only make her feel better. Less inflammation usually means less pain and fatigue.

                                I'm not saying you should ignore the reams of good advice others have shared here. But it sounds like she's tried everything and is worn out from it, and these are very easy, foundational changes that should bring about really good results. And good results will make it far easier for you to suggest other changes (like trying dairy and/or nightshade elimination).

                                Would a very strict, low-lectin whole30 type trial be good for her? Absolutely. But if you can't talk her into it, it doesn't hurt at all to start small and build up to more intimidating ideas.

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