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Old 04-24-2012, 02:39 PM #1
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Default Continued improvement, sugar another key

I am really happy that another key was found to help my Automatic Neuropathy/Dysautonomia (POTS=Postural Orthostatic Tachycardia Syndrome.)

I take MANY supplements with help from my Integrative MD. He has helped me for years with my Chronic Fatigue Syndrome. That is thankfully doing very well. Doctors before him were absolutely clueless. Doctors have never heard of POTS. HOW they can be so clueless is beyond me.

But, I do have this fantastic MD. Anyway, along with the Autonomic Neuropathy came PN on my feet. He said to take Alpha Lipoic Acid, then Benfotiamine. They worked so well. But, about two months ago he suggested I cut sugar out of my diet and eat only very good carbs. I was already gluten free, but many gfree foods you buy are junky, full of carbs.

SO, I did it and didn't notice much at first, but lately I have seen improvement again! It has all happened over two years. But, the ALA, then Benfotiamine made it faster and then no sugar kept it going! I keep my glucose as level as I can. I have no diabetes problems at all but that is what surprised me so much. I thought if all numbers are normal, even testing at home, you were fine. Still, the spike from eating is not good. So, I have really been working hard and hubby and I are eating wonderful foods. We always ate healthful foods, but now even more so. We are careful about glycation.

I love the book "Minding my Mitochondria" and I have had it for quite a while. Great advice.

I hardly feel anything wrong with my feet now.

Also, my POTS is improving. I was unable to sit or stand/walk. I have had POTS for three years. It is all connected. I can now walk for quite a while. Going to church without a wheelchair is great! I can even shop for clothes at CHICO'S! Hubby used to have to take me in my w.chair and show me clothes, I couldn't even turn my head...so dizzy, nauseated, lightheaded, heart palps, FAST heart rate, sensitive to sounds etc.

I just started being able to shop small stores without a little folding chair last week! In BIG stores I use a cute scooter, also when I walk my little dog. But I know before long I will walk further and further without feeling like I will faint. With POTS, you have TERRIBLE orthostatic intolerance.

I am really excited! My doctor ALWAYS told me I could get better! Other POTS and CFS patients' doctors do not help at all. I work with him. I research and ask good questions and we are a team.

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Old 04-24-2012, 02:49 PM #2
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Quote:
Originally Posted by Sallysblooms View Post
I am really happy that another key was found to help my Automatic Neuropathy/Dysautonomia (POTS=Postural Orthostatic Tachycardia Syndrome.)

I take MANY supplements with help from my Integrative MD. He has helped me for years with my Chronic Fatigue Syndrome. That is thankfully doing very well. Doctors before him were absolutely clueless. Doctors have never heard of POTS. HOW they can be so clueless is beyond me.

But, I do have this fantastic MD. Anyway, along with the Autonomic Neuropathy came PN on my feet. He said to take Alpha Lipoic Acid, then Benfotiamine. They worked so well. But, about two months ago he suggested I cut sugar out of my diet and eat only very good carbs. I was already gluten free, but many gfree foods you buy are junky, full of carbs.

SO, I did it and didn't notice much at first, but lately I have seen improvement again! It has all happened over two years. But, the ALA, then Benfotiamine made it faster and then no sugar kept it going! I keep my glucose as level as I can. I have no diabetes problems at all but that is what surprised me so much. I thought if all numbers are normal, even testing at home, you were fine. Still, the spike from eating is not good. So, I have really been working hard and hubby and I are eating wonderful foods. We always ate healthful foods, but now even more so. We are careful about glycation.

I love the book "Minding my Mitochondria" and I have had it for quite a while. Great advice.

I hardly feel anything wrong with my feet now.

Also, my POTS is improving. I was unable to sit or stand/walk. I have had POTS for three years. It is all connected. I can now walk for quite a while. Going to church without a wheelchair is great! I can even shop for clothes at CHICO'S! Hubby used to have to take me in my w.chair and show me clothes, I couldn't even turn my head...so dizzy, nauseated, lightheaded, heart palps, FAST heart rate, sensitive to sounds etc.

I just started being able to shop small stores without a little folding chair last week! In BIG stores I use a cute scooter, also when I walk my little dog. But I know before long I will walk further and further without feeling like I will faint.

I am really excited! My doctor ALWAYS told me I could get better! Other POTS and CFS patients' doctors do not help at all. I work with him. I research and ask good questions and we are a team.

Your story is very inspiring.....Hope you continue to get better.
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Old 04-24-2012, 06:58 PM #3
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Sally, l am so happy for you. It's amazing how our bodies have the capacity to heal when given the right tools.

I have never heard of POTS. It sounds like it has a lot to to with an increase in heart rate when standing. How did you finally come to this diagnosis? It's not always easy to find the root cause of PN. Your very fortunate to have a great MD, they are hard to find.

Sue
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Old 04-24-2012, 07:21 PM #4
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Shezian, yes, the main symptom to define POTS is an increase of 30 or more beats per minute when standing. The blood will not stay in the brain and heart.

I went to many doctors, the ER... NO one knew what was wrong. My integrative is not in the same city so I was too ill to travel.

I went to a cardiologist since there is a lot of chest pain with it. He had no idea but talked to another doctor there and he said it could be Dysautonomia but he didn't know much about it.

I then learned about Dysautonomia and POTS is Dysautonomia but more specific with the heart beating so fast.

I then called my integrative doctor and finally we drove to see him. I was SO ILL. Unable to walk, in my wheelchair, very upset. MUCH too ill for the tilt table test. She did other testing right there. I was right, it was POTS.

So we added more supplements and did more blood tests, got my hormones balanced and I slowly improved. My serotonin and Vit D were LOW. They are much better and that was helpful in many ways.
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Old 04-24-2012, 08:16 PM #5
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Default yay

I'm so happy to hear this good news!

I'm just curious...what is an integrative doctor? I've never heard of that kind.
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Old 04-24-2012, 08:27 PM #6
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Integrative medicine treats the whole person. They can use all treatments, conventional and alternative. Complimentary, using all treatments available, not just writing prescriptions.

They are more open minded and more scientific. More emphasis on healing instead of treating symptoms.
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Old 04-25-2012, 06:21 AM #7
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Default The other aspect this post brought up--

--is how much diet can affect us.

For a while now, it's been argued that the SAD (Standard American Diet) is fundamentally debilitating to the body---but, unfortunately, much of the argument has been around the fringes. It's very hard to get really mainstream serious coverage of dietary issues when there are so many forces out there looking to sell their products and maintain the status quo. Large agricultural interests, food processors/manufacturers, fast food chains--all have vested interest in keeping us eating heavily processed grain based foods with lots of sugar and salt added. And they are certainly powerful enough to lobby and influence legislation--it's certainly been argued that at least part of out trouble stems from heavy subsidy of certain crops, which are then overproduced and need to be used SOMEWHERE. (Few of us have heard of any broccoli lobby, but I digress.)

In time, eating such a diet tends to have some not so good consequences; our bodies have not caught up evolutionarily to the advances in genetic modification and/or abundance of certain food stuffs. Our bodies, more used to a feast-or-famine regimen in pre-civilization eras as regards meats or sweets, and to daily browsing for vegetable matter, have a hard time adapting to always available sources of simple carbs and enormous amounts of animal protein. Given our bodies naturally tendency to want to hold on to calories for presumed lean times ahead, we readily store this as fat, and biochemically develop insulin resistance. Our overconsumption of refined foods not only adds in a lot of sugar and salt but also can lead to deficiency of important trace minerals and vitamins. And, of course, most of us don't get the exercise needed daily that would mitigate some of these problems. It's not a good scenario.

Though it is difficult, many do now choose to alter their diets in the direction of a more "natural", earlier time. They cut down on processed foods, eat fewer grains, eat more vegetables and some fruits in season, try to use meat as a flavoring rather than a main course, limit sugar and salt, and even eat more sparingly throughout the day rather than have a few big meals. Admittedly, this requires a lot of forethought and vigilance in a society not predisposed to aid it. But I've yet to hear the people who've made a commitment to this come back some months later and say "You know, I tried healthier eating, but I felt like crap--I'm going back to my old way". There are certainly people who've reverted because they've felt "it's too hard", and there are aspects of the SAD that are addicting--it can be as tough to get off sugar and salt initially as it can be to get off many drugs. The people who make who see it through that first month or so, though, do generally begin to notice some nice salutary effects.

Often, though, the motivation to do this doesn't occur until something really bad hits. (I bet Melody will chime in here.) Many of us don't try a dietary alteration until we're hit with unmistakable evidence that our diet is leading us to harm (i.e., diabetes), or until our debilitation doesn't respond as much as we want to more mundane therapies (i.e., drugs, surgery). I know I didn't start thinking more Paleo/Zone, and try avoiding gluten and processed food, until the neuropathy attack. Before that, who cared?

So, to paraphrase Michael Pollan: "Eat food. Not too much. Mostly plants. And not a lot of processed crap. And try to do it evenly over the course of a day." (Believe me, it's amazing what you can do with various colored cabbages, some black pepper, and an apple or two.) And, I'd add--"If you can, go out and take a walk after you've eaten."
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Old 04-25-2012, 06:41 AM #8
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Glenn-what do you think of eating only twice per day? Do you think that is beneficial for health?

Sue
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Old 04-25-2012, 08:51 AM #9
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Default How soon they forget...

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(Few of us have heard of any broccoli lobby, but I digress.)
There is very definitely a broccoli lobby. Remember George H.W. Bush's immortal (infamous?) words (gaff?)? If not, there's a clip at the bottom of this recent article about the powerful broccoli lobby!

http://blogs.wsj.com/washwire/2012/0...ington+Wire%29

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Old 04-25-2012, 10:16 AM #10
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Shezian, I eat all day, a wonderful smoothie with the best ingredients possible, a healthful small lunch and little snacks of nuts and cranberries, protein bars we make that are like cookies but SO healthful, grapes, etc. For dinner, we make a really great dish every night. My hubby is a wonderful cook. We love shrimp, venison, salads, salmon, yummy things... With my POTS I have not been able to help until recently.

But blood sugar needs to be level. Low sugar from not eating is not good just as eating high carbs and sugar making the level spike. A nice level glucose level is good for the brain and body, the nerves of course. I feels good not going to low levels, more energy etc.
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