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. :)

http://img.photobucket.com/albums/v4...inkbow-1-1.jpg

Your story is very inspiring.....Hope you continue to get better.

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:)

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.

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.

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. :)

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."

Glenn-what do you think of eating only twice per day? Do you think that is beneficial for health?

Sue

How soon they forget...
 

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! :vomit: :thud:

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

Doc

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.

My smoothie has everything needed. Kale, carrots, apple, banana, frozen berries, greek yogurt, Green's First powder and Life Extention Whey powder (both what my doctor wants me to use-FULL of good things) Bob's gluten free Oats. I think that is all. Has the protein, minerals, vitamins, fiber, amino acids I need. I look forward to it every morning.

Glenntaj, I was always so careful with food since I had CFS for 20 years. I knew that I HAD to eat great food to stay strong. Supplements too of course.

But I would have Cola and some sweets sometimes. I just thought a small amount of sweets was ok in moderation. I really found out it isn't. For me at least. Even cereals I thought were healthful have too many carbs. if not eaten with protein.

We have really enjoyed learning how to use other things like Coconut Palm sugar, coconut oil, etc. My doctor also knows about nutrition so I check with him before using new things.

Greens first powder, whey powder?
What are these good for?
Do you put your oats the blender as well?

Sue

This is new information:

Blue green algae has been found to contain a toxin which is
damaging to the brain:

http://brainbank.med.miami.edu/x63.xml

http://thedartmouth.com/2011/06/28/news/ALS

http://neurotalk.psychcentral.com/sh...ighlight=algae

Even Dr. Weil is cautioning against algae in supplements:
http://lancasteronline.com/article/l...r-health-.html

Shezian, yes, all in the blender, kale oats and all! You can read about them below.

Green's First is alkalizing, many good ingredients.

http://www.greensfirst.com/gf_content2_2011.asp?node=15

Life Extention Whey Protein

http://www.lef.org/Vitamins-Suppleme...whey%20protein

I guess that is a small part of the Green's First, I can ask my doctor next time I talk to her. It is full of so many good things.

You mentioned about your hormones being balanced, how did you know that it needs to be corrected? Did the integrative MD take a test on your hormones? Was there a specific hormones? What was the test called?

Thanks

I had Dr. Sergey Dzugan work with my doctor. It is a really great program but not cheap. Worth every penny though. You answer many questions and take A LOT of blood tests. Then he designs a program for you and they keep track of how you are on your own area of the site online. All bioidentical hormones, thyroid and cortisol that I needed also. Estrogen, Pregnenolone, Progesterone, and 7 Keto DHEA.

I had a hysterectomy and the gyn was a GOOF about hormones! I was REALLY ill. She just gave me a patch, ha. I knew she was very ignorant about hormones, but could not find even a hormone specialist that knew much. I got more and more sick with migraines.

For MANY years I suffered with migraines. The kind you cry and scream from. Throwing up constantly. I cannot take any meds for them. I tried so many, ER visits, doctors....It ruined a lot of my life.

SO, yes, I needed to get the hormones figured out! I was so happy my doctor suggested the Dzugan program. Your doctor does have to know enough to work with them though.

I was on the program for several years. Now, my doctor does it for me. We know what I need and all is stable and I never had a migraine again. Headaches from POTS, yes. Hormonal horrid migraines, all gone.

He has written two books. I have one and love it. I didn't need the one about migraines!

Sally, is Neuropathy a symptom of your POTS or the other way around?

You said you had auto NP, how did you get diagnosed with this type of PN?

What is worse POTs or auto NP?

Did you also ge burning feet and hands and sore feet?

I have bloated stomach, l just put it down to getting older. Hopefully it's not Auto NP.

Sue

I would start to find a greens supplement without the algae, if it were me using it. This toxin is not environmental (from pollution), the algae makes it. And it is cumulative.

Some algae in the past was contaminated with fluoride, and that came from the rocks and water it was growing in. This new neurotoxin is different.

And just to add--
 

--I've never been a fan of eating just once or twice a day, though I understand why some people have done that; I think what those people are ultimately looking to do is restrict calories, as there is some preliminary evidence, mostly from rodent studies, that dropping the number of calories that one eats each day by about a quarter to a third might result in longer life. (The mechanisms of this are still open to interpretation.)

Now, given the huge OVERAGE of calories many people in the West consume each day, and the lack of physical activity engaged in, cutting back on calories is likely not a bad idea. Most sedentary people of moderate size can get by quite well on 1500-1800 calories each day. A little less than that promotes weight loss, a little more, weight gain. There are individual differences, of course--my wife, who runs 60-70 miles each week (ultramarathoners are crazy), needs more, though her metabolism has now become so efficient it's really hard for her to lose weight. Metabolisms do adjust to long-term condition changes, so I imagine people who do caloric-restriction diets will make the reduced calories "go farther" in time.

I still think, though, that our bodies tend to do better in "grazing" mode. Beyond the caloric content, eating a bit at frequent intervals helps to keep our blood sugar and energy levels more stable. And though humans certainly evolved in environments in which there were long stretches of hunger punctuated by rapid ingestion of calories when a hunt was successful, far more frequently the day-to-day foraging resulted in an "eat a bit at a time, several times a day" scenario. (Our closest relatives, the great apes, still show this pattern, though they occasionally "feast" as well.)

There are individual differences in TYPE of food that works best for people. Not everyone can digest dairy products past childhood, for example--that ability seems to have been conveyed to certain groups of humans fairly recently, as a result of benevolent mutation that is thought to have started in Northern Europe. And some people seem to work better on a diet higher in animal protein that others. But I don't know too many who work better on large amounts of simple carbohydrates. Sure, eating sugar is VERY rewarding; our brains have that pleasure pathway well mapped out, and our bodies know how to very quickly store those kinds of calories for the future, but that was an evolutionary mechanism to get us to stock up for presumed times of famine. It was never designed to be experienced continuously, which is what the easy availability of sugary drinks and processed foods now allows.

Basically as we age, the insulin response becomes less efficient.
So what you could do at 25, is harder, or impossible at 40+.

Eating once a day would be an insulin spike. When this happens, the food, is rapidly stored, as there is a time element for glucose to move around the blood. So in effect one would have a rapid onset of insulin, and it would fall. Then there could be a reactive low blood sugar (hypoglycemia).

Low blood sugars starve neurons and other cells.

Another factor is alcohol. Diabetics know this well... but consumption of alcohol, results in low blood sugars as well.
This is because of the liver metabolism of alcohol.

The video:
http://www.youtube.com/watch?v=dBnniua6-oM
This is a long video, and deals with obesity, but around the middle mark, is an explanation of the liver metabolism of fructose, and alcohol.

This article explains more:
http://www.medicinenet.com/alcohol_a...tion/page4.htm

Basically, eating only once a day...a large meal, and drinking alcohol, could lead to periods of time when blood glucose is low, hence starving cells and neurons. Eating throughout the day small amounts, lowers insulin spikes, and helps prevent the LOWS which are problematic. Our doctors today do not attend to the LOWS... only highs. They only look for "diabetes" and not other forms of impaired glucose utilization.

I am thinking of taking my hormones tested. I looked up from the internet the list of hormones in our body. There are a lot!!! For purposes of trying to link it to the PN and to some improvements of my moods, what could be the major hormones that I should get? Estrogen, Progesteron, Cortisol, Melatonin, Epinephrine, Norepinephrine, Serotonin - which of these could be beneficial to me?

Thank you for your inputs.

Sue, It is hard to know for sure. POTS is caused by a lot of triggers. Car accidents, surgery, or sometimes hormones at puberty. Lot of young girls have it happen then and lose their childhood. No school, friends, etv.

I think sugery and/or antibiotics triggered it for me. With CFS, I had a good chance of getting it. A lot of people with CFS get Orthostatic Intolerance problems.

I was diagnosed with NP with symptoms and a couple of tests, no punch test or anything like that. It fell into place also with the Autonomic Neuropathy.

For ME, POTS is worse since I am better with my PN. It would depend on your case of POTS and PN. POTS is a breakdown of every system. The body does not work. No temperature regulation, digestion problems, terrible dizziness and lightheadedness on a scale that is hard to believe. I could not move my head at first.

The NP didn't move to my hands. My feet did burn, tingle and felt like I had socks on and had a lack of feeling. Not numb really, I could feel, but not normal at all.

A lot of people with POTS or "just" Dysautonomia have digestion problems. That is a huge problem for many. Swallowing, bloating, nausea etc. I had that all for a long time. Nausea 24 hours a day. I had to have a cold pack on my stomach at all times.

Again, the supplements were what I needed for the nerves. The sad thing is I have not seen another POTSY that gets this information from her doctor. VERY sad. I try to help them at least learn about the possiblities.

Many are in the hospital all the time. Many faint multiple times a day. I always made sure I had my wheelchair close by. Or usually I was IN it.

Many of them have LOW bp, so that is another problem that often goes with POTS. My BP was HIGH, then high/normal and now normal and sometimes low.

Sally

I take estrogen, testosterone, pregnenalone, progesterone, 7 Keto DHEA Thyroid, Cortisol (TINY bit at noon since I get low at 1-4pm.) They are compounded by a pharmacist.

I take 5HTP for the serotonin level. Vit D is good also. I think all work together for me, but 5HTP and SAMe have been great for mood.

When ill for so long like I have been with CFS and before that, another problem....the seratonin can really SINK. Most of the reserves of our nutrients get used up. That is why the best food and supplements and SLEEP are important.

I plan to get my hormones tested first. I am now taking most of the supplements listed in this forum.

I am taking SAM-e, as suggested by Mrs.D for my osteoarthritis. I think its slowly working for my arthritis. I hope it continues to improve.

Oh another reason why I want my hormones tested is because I have never gained weight. I am 5'6" and I have never ever exceeded 114lbs. My endocrinologist told me after my thyroidectomy that I may gain weight. Never did I gain weight. I am taking Gabapentin, ang again I am not gaining weight. I am not complaining about my weight, its just that there may be something wrong with my metabolism. I eat the right food, but my downside is I only sleep at an average of 4hours. I am woorking on getting enough sleep.

Good to get your hormones checked.:)


I just watched this video about sugar's affects on the blood cells. Interesting.

http://www.youtube.com/watch?v=aH47sGmJZaQ

mrs D-that is really interesting about he Algae. I just wonder if there is anything in my water here. Since we have moved here a year ago, is when all the sickness really started with me. I have switched to bottled water a week ago, as l was getting paranoid about the water. Can this Algae, present itself in seafood? I have been eating a lot of it lately, and feel strange. Had a huge slap of salmon last night, this morning, l feel floaty again. Not sure if it has any correlation or not.
On insulin, doesn't it spike and fall each time we eat? Isn't it more to do with what kind of food is eaten? Why would eating once or twice per day have more of a dramatic fall of insulin?

Sally- i get floatiness which last for a few weeks sometimes, it feels like l have out of body experience. My neuro, put this down to a symptom of migraine, even though l don't' get headaches anymore l used to get them bad in my early twenties.
He said it has nothing to do with my PN, but l am starting to wonder now if it does.

Also, l was watching a cooking show about 2 Italians last night, and in Italy, they eat so much pasta, pizza, and white carbs. They seem healthy and happy. But this isn't' recommended by many nutritionists. I must admit, when l eat a healthy dose of pasta, l feel terrific.

Sue

Some other symptoms l have noticed in the past month. My stools seem very soft and mushy. Not round and oblong as normal stools should be and they seem to just come out really quickly, but l still go like clockwork each morning. Tummy more bloated than usual.
Also, this week whilst taking blood on 3-4 different occasions the blood wouldn't come out of my arm, it actually stopped and she had to use the other arm. This has happened to me before when l was younger, so l suppose it could all be normal for me.

And of course my normal floatiness, spaced out feeling l get on and off, which comes usually on day 6-8 day of my cycle. Not sure why. I thought it could hormone related as first, but now l am starting to wonder if all of this is tied in with PN.


I just hope its not Autonomic PN.

Sue

As we age, there is insulin resistance that begins. For some people it is more severe than others.

But one characteristic is that the insulin response becomes less flexible, and efficient.

Dr. Barry Sears, PhD has written several books about this subject and explains it in detail.
His first was Enter the Zone.

That's what I was going to suggest, and working with an endocrinologist. They're not something I'd want to mess with cavalierly, even those sold OTC. Dr. Ray Sahelian talks about a lot of them on his site (scroll down page for topics), and while I have some reservations because he also sells product, it may be a starting point for further research before talking to an endocrinologist.

Some hormones are precursors/successors to others so it may not be necessary to take all of them; it depends on how well your system is metabolizing. For example, pregnenolone (which is made from cholesterol) is a pro-hormone, because it is a precursor to other hormones, which in turn are precursors to more hormones.
http://en.wikipedia.org/wiki/Pregnenolone

I'm taking currently taking pregnenolone & DHEA for chronic pain. I posted the reasons, source articles, results, etc. here.

Doc

There are concerns about farmed shrimp from Asia having drugs in them. Specifically Chloramphenicol, which is a drug that is known to cause neuropathy.

http://neurotalk.psychcentral.com/post867783-31.html

If your shrimp there comes from Thailand etc, I'd reconsider it.
Salmon here at one time farmed was contaminated by dioxins, but that has been supposedly fixed.

Oh yes, we only use shrimp from America. We have usually lived where we could get it fresh also. We love shrimp and salmon. Both are so healthful.

I never found an Endocrine doctor that knew anything about hormones, but there must be some that do. They often just do other things like thyroid, diabetes etc. I used Dr. Dzugan and he and the doctor that works with hiim really know what they are doing. There are really good doctors around. I have Dr. Holtze really close by and that was my 2nd choice. I am going to start going to him for other things to see what all he does. I know it is not just hormone help.

I will have to find out where my seafood comes from? I eat salmon, crabs, oysters and prawns often. Especially when eating out.

When l buy at store, l usually always check where they are from, but in restaurants it's hard to know.

Sue

I just saw a report about sugar by Dr. Sanjay Gupta on CNN today. Pretty extreme stuff!

I stopped taking it several months ago because Dr. Carolyn Dean said it depletes Magnesium.

Nice to know it could help with PN and avoiding cancer, heart disease, etc.

I haven't had ice-cream in a year. No chocolate. No cake.

I didn't realize how many things have sugar even when you can't taste it. You really have to read the labels and assume nothing. But even the labels can be misleading with a variety of innocent and positive-sounding names.

I now get all my sweet satisfaction from fruit.

I recently ate something with sugar without realizing it had sugar, and it felt weird. I guess my body adapted to life without it.

One of the main reasons I avoid sugar now is it messes up my gut, and when that happens, all supplements aren't absorbed properly. I have to take bitter drops of MgCl in water to reset the flora.

Yes, sugar is in many things, other carbs too. Keeping blood glucose even is not easy all of the time. Added sugar is easier to leave out, but carbs are harder. Of course, we do need some good carbs.

Doc, I am not sure if I have to discuss the hormonal treatment with my endocrinologist or my primary care physician. When I searched on the hormones - its a lot! I don't know which hormones to test.

I read your posts....are you still taking the pregnenolone?

My sore feet and numbness has progressed to small areas of numbness and burning on my hands. These tend to move around and are really causing me a lot of anxiety.

I am 178cm (5'11") and 80kg (177lb) a solid build but not overweight, my wife's description and she is a health professional. I eat reasonably healthy apart from my big sweet tooth; I eat a fair bit of ice cream, chocolate and/or lollies (candy) most days. The only reason I have gotten away with this is because of my level of exercise.

I am wondering if my diet could be contributing to my problem or if I could be pre-diabetic?

I think ice cream is a double whammy.

Sugar and lots of FAT. There have been lots of studies on
eating high fat content foods, where volunteers were studied,
and blood drawn for several hours after the high fat meal.

What was found was that triglycerides go way up and make the blood more viscous. When thick like that it can be a set up for a cardiovascular event... or thickened blood cannot get thru the tiny blood vessels in the hands and feet.

Have you had testing for Ig proteins in the blood? MGUS?

Numbness that comes and goes, implies a lifestyle event happening IMO.

Hormones are secreted by the endocrine system.
A few years ago, I saw a certified holistic doctor who tested my thyroid, a few adrenal hormones (because there is a strong relationship between adrenal hormones and chronic pain) and some others I don't recall. Everything was well within normal and above median except the adrenals.

Later on, after reading Dr. Forest Tennant's articles on adrenal hormones, I followed his guidelines.

But it may also depend on what hormones you're looking at and for what reason(s). Men routinely work with their PCPs with regard to testosterone replacement, and women work with their gynos for estrogen replacement. I've had steroid injections from orthopedists & pain management doctors (usually anesthesiologists), and other tests from neurologists for headaches & PN, and still others from a rheumatologist for arthritis, and several of them tested me for diabetes to no avail. But for widescale screening, especially if I didn't know what I was looking for, I'd do some homework and either follow where that lead me or at least start with an endocrinologist. Asking your PCP who to see about what isn't a bad idea either.

Yup, I'm still taking the hormones I mentioned; it's only been 3 days since that post. :)

Doc