[Wing42]

Life Extension Foundation has a protocol that has useful information and advise: http://www.lef.org/protocols/prtcl-017.shtml .

Through independent research over the years, I've started taking many of the supplements the protocol recommends. While not having pronounced symptoms like Billye or dahlek or Kmeb, I did have some arthritis when the PN started, but have none now. Also, ANA titers are the primary test for lupus. My scores were off the chart in three testings, but without symptoms. I'm doing all possible to keep it that way.

That article is excellent to my mind because its conclusions are so similar to protocols for other chronic conditions and the explanations make sense. It's telling that the protocols for heart and circulatory system health from many sources are so similar to this protocol to balance and calm your immune system, and is also very similar to protocols to calm and heal your nervous system.

I think its important to follow the entire protocol unless there is a good reason to not follow one or two things. The supplements, stress reduction, exercise, establishing and maintaining a healthy gut, eating a heart/liver/nerve healthy diet, etc. all work together to turn your life into a new and better direction. Taking my own advice, I stopped taking DHEA about three months ago, but since it's part of this protocol and since the rational for including it makes sense to me, I'll start taking it again.

There isn't enough in the protocol about diet to be easy to follow, but any of the PN or heart healthy diets would support this LEF protocol. The principles are pretty simple: 1) reduce or eliminate refined sugars, alcohol, and starches, but if you have some as in fruit, be sure to have healthy fiber, fat, or protein with it to slow absorption and reduce stress to the body, 2) eat more fruit and veggies, with more veggies than fruit, and more above ground veggies than root veggies, 3) whole grain is good, refined bad, 4) beans, fish, and eggs are good, poultry less good, red meat should be in small quantities and infrequent. You don't need or benefit from a lot of protein, just have some good quality protein every day, 5) trans fats from hydrogenated oils are a no-no (read ingredients in pastries and margarine), omega 3 fats and omega 6 fats in balance are best...these include olive oil, canola oil, flax seed oil, and mainly fish oil. Supplement with fish oil caps twice a day (I do that with my large dogs, the last three lived 17 healthy years) and eat fresh fish at least twice a week. Most of your cooking, baking, and salad dressings should be with olive oil, 6) probiotics are important. Eat yogurt, small quantities of stinky live cheese, and/or take pills daily. A healthy gut can cure your autoimmune reaction.

Be patient. Healing is a form of growing, and takes time, like for the rest of your life. As you make changes, you should start feeling better in a month or six.

I'm an LEF member, but find them very pricey. There are other sources for top quality supplements that don't charge nearly as much. My primary source is www.iherb.com, but I also buy supplements from Costco, Walmart, http://www.puritan.com/?AFID=11&SAFI...6H-KQ7J8-JEZHP , and http://www.affordablecountrylife.com/2488.html .

[dahlek]

and there is always one 'but', isn't there?

I am doggedly suspicious of web sites that use dated or unaccessable references that seem to dovetail neatly any given philosophy or therapy. I mean no disrespect here. If you can manage your pain by living so simply that is excellent, in fact I am jealous to a degree. I don't think any who are not so fortunate resent your good fortune one bit.

Most of the medications we take for pain - have frequently updated patient information - resulting from doctor and patient feedback [usually regarding adverse reactions or actions]. I believe that few physicians bother to report adverse reactions, while WE the educated patients report it - or should do so to all legitimate sources who will listen. It has stood me in good stead, and as one 'lesson' I have learned well from the cancer communities! While all along us patients who on any medication[s] long term, are not being informed about these often important changes!

Neuropathy advocacy is virtually non-existent for the growing numbers of PN'ers. Research is a 'booming' business, but focus is lacking. Most of any advocacy seems to be coming from other other sources such as those who have PN as a by-product of some other primary disease [diabetes and cancer, for example].

Research on nerve damage has been racing by leaps and bounds in just the 4 long [or, short] years since I acquired my set of issues. Here is one example:
http://www.news-medical.net:80/?id=25792
I mean, did any of us know that there are specially bred MICE to address PN issues? And that only relates to Herpes Simplex!

I point this out to simply say there is no one key program, as other situations, conditions and illnesses can, and do either intrude, prevent or forbid our ability to adhere to ANY program per-se. I DO believe that we each have the intelligence, motivation and ability to learn and achieve some degree of comfort.

Even just ONE little pain-free moment today....for all! - j

[Wing42]

Dahlek,

You're dismissing all of it because of dated research? Isn't a study useful and valid if it's well thought out and well carried out no matter how old? The protocol has 35 references, some as recent as 2002. The protocol was written in 2003. Out of the dozens of recommendations, which in particular are you dismissing?

This article covers a lot of ground. Even if one or more items have not been supported with the latest research, that leaves everything else that has been shown to be helpful. If you can't find a reference (have you looked? do you have access?) why would you doubt the integrity of the people at LEF. They have some commercial interest, but I've found nothing they wrote over the years to be bogus, and they always report new findings that refute or support their recommendations. There are physicians on this board who trust their research and recommendations, and so do I.

Of course the references support their point of view. The people at LEF are research biologists. They probably surveyed the literature, put promising studies and various theories together and then came up with their point of view. That's what I would do to put together a protocol, and that's what I did with my "program" in the Stickies section. The difference is that the scientists at LEF have far more depth and breadth of knowledge than me.

A protocol like the LEF one, or mine for that matter, is not a simple thing, or as you say "one key program." Instead, they are a way of living and being that promotes health. I doubt that details such as exact amounts or formulations of a particular supplement, or whether apples or pears are better for you, or whether you sing or meditate for stress relief are critical. The framework and approach in the protocol are the important thing. Following the framework and most details of this type of protocol while making changes as you see fit is empowering yourself and changing your life and health.

Or you can try a pill, then another one or two or three, or raise or lower the dosage.

How has that been working for you? Good enough to continue on the same path, or are you ready to try a whole other approach?

BTW, you can do the entire protocol, and continue with the medication. I'd bet a dollar to a dime that if you live the LEF protocol, you would need less and less medication as the months went by, and you would want less and less medication, and you would feel better and better in six month increments as the years went by.

[Dakota]

David, the diet sounds healthy, and that's the way I try to eat with one exception. I have grown increasingly concerned about the safety of eating fish, due to the fact that our oceans are so polluted. Farm raised fish are even worse, due to pollutants in the water from run-off. And most of the pollutants are neurotoxins. I am eating much less meat and fish these days.

[watsonsh]

Thanks Wing I thought it was a good article.

[cyclelops]

I have been reading Life Extension Foundation stuff for a long time, at least since 1999. Back then it seemed they were less into sales of products and more into just posting research. I do think that some of their research can be found on medline, just check out the research and make your own decisions.

I think some nutritional products ARE worth looking into and worth using. We do have a problem in that there really is no one overseeing what is in those products, and some claims for what they do are questionable.

I have read articles in very reputable journals advocating something and then later read...oh oh, nope, that causes problems. The biggest debacle was the tryptophan B6 thing several decades ago, thankfully I did not take that, however, just lately there was an article on taking Vit. E 1500mg after a work out to lower the muscle pain...(it works) however, it can cause bleeding.

My humble opinion, is not far from David's in that you need to live a life that is based around a 'health philosophy.' He accurately emphasizes the areas that need to be addressed in that lifestyle: diet, exercise, spiritual, social etc. Although even very healthy people get sick and die...it happens.

I have concerns that our society has moved away from most of those critical aspects of healthy living. Our diets are artificial. I find it ironic that we pay LESS for MORE processed food, and MORE for LESS processed food....what is wrong with that picture?

I am fortunate that I can get organic milk, yogurt and cheese from a local certified organic company. (Prions are still an issue, however, you do the best you can...and yes, prions can still show up in organically fed cows, as grazers are exposed to a prion found in chronic wasting disease of elk and deer....and prions do cross species.) However, it beats drinking and eating stuff from cows fed via cannibalism. They are ruminants, and it is just not natural to feed them animal products. I also make my own yogurt. Very easy.

I am fortunate that I live in an area with farmers markets and that I have an enormous garden, which, my husband has to do all the heavy work on, lol....my garden is bigger than the average suburban lot. I think those that dwell in large cities probably have stores that cater to the organic or health market....food should be certified organic, and there are organizations that do that...do your homework before you pay big bucks for food claimed to be organic.

One year I raised 175 chickens (decades ago, and not where I live now)
(don't ever do that---they need to be butchered and plucked and gutted and if you don't have a sharp axe and strong stomach---it is hideous work.) Luckily I was able to sell over a 100 of them-still alive...the rest we did the old fashioned way. It was good, but gruesome. It showed me that animals die so we can live and it was a powerful lesson. I do not take any life for granted, and more than anything realize how interconnected we are. I didn't wield the axe...my poor husband did that...but I learned how to hypnotize a chicken prior to its demise...and yes, every one was asleep when 'IT' happened. I did get to pluck and gut them...the very old fashioned way.

I haven't raised any of my own chicken since, but maybe next year I may, as I live near huge chicken farms, and I loathe the way they treat these creatures, and would not eat an egg from an 'egg farm'. I eat cage free, free range eggs, and yes they do taste different...so do the chickens.... (my one little girl became a vegetarian in middle school, citing this horrendous experience, and remained one for a decade...now in her mid twenties she eats some meat, and was the one who prodded me back into natural eating habits.) She was not supposed to be watching the chicken-thing, she was only 4 at the time.

I bought peaches the other day and they were a dollar a piece-but you know they were worth it. I could only afford 4.

I don't eat organic food all the time....I can't afford it, and I can't get to the organic food stores other than once per month. It is far.

But when you hear that melamine is in pet food, why would we have reason to believe it wasn't added to flour brought here from China?

You can't change the world, but you can change small things in your life.

You can pledge to do one thing in each category. You can do some type of exercise, even if it is just upper or lower body for 15 minutes every day...or most days..(give yourself down days and don't feel guilty...it happens).

You can eat slightly better...you can buy the slightly better bread, either whole grain or if gluten insensitive the brown rice bread.

You can buy locally grown or locally made goods even if a tad more expensive...if you are on a budget, just buy one item. I have found the good food, actually is so much healthier, I need less...sounds odd, but its true. Buying from small local producers and stores helps keep the little guy in business---how important is that!

As far as the nutraceuticals go, you are really on your own....we are at the mercy of the manufactuer. Just do your research, don't just listen to the person selling them, and beware of pyramid schemes.

Every one can meditate or relax. We built a pond and small waterfall outside our bedroom window with rocks collected off my small piece of land here, (Of course, hubby had to dig the hole and move the bigger rocks..and we had some big ones.... a frog moved in...and he sings at night...an oriole takes a shower there on some days. (Of course, come Fall, I have to drain it and fish out the frog and return him to the river so he doesn't freeze--unless he leaves before then) A little fountain bought at a store or even a water CD can give you some of nature's music to relax to. I especially like the thunderstorm CD in the winter!

Even a container garden with flowers feeds butterflies and bees, even in the busiest city...and it can also grow you a few tomatoes....a jalepeno, some cilantro, a green pepper and voila...SALSA!

Dahlek is right, that PN is not a condition that has any advocacy, and that hurts mostly those with Idiopathic PN. We have no advocacy. If the PN is due to a disease, at least most diseases have advocacy. The suffering is the same, regardless of the cause, but at least there is some advocacy group and information and even more important, an enemy to fight, and enemy that is assaulting your health, your life.

There is no reason that an Idiopathic PN Advocacy group could not be set up, but we are in our own way our worst enemy, in that we continue to prod to find the cause, as we should...but our 'disease' remains an enigma, while we hope we find an etiology we can fight with some treatment.

After several years of inmuerable tests you have to accept "Idiopathic" because you have run out of options. Not that you give up the search, but eventually you do run out of options as test after test for causes comes back negative, and all you have is a positive small fiber neuropathy finding.

You have literally reached the end of the internet. So have the docs.

That group of individuals needs an advocacy. If 'Idiopathic Peripheral Neuropathy' is a disease entity of its own, it should have its own advocacy.

Lastly, those who feel they have some 'control' over their lives generally have a higher rating of quality of life, than those who do not, so we need to, individually and as a group, work to gain, 'control' over our lives, even if our medical condition is not under the kind of control we want it to be. We have to have vital lives away from our illness as well. That is hard, as many are disabled or confined due to it. Every day, is rising to a challenge. Often one others do not see.

With Idiopathic PN, you have an invisible disease, and it is very tough, extremely tough to stay optimistic and motivated to get through every day...because you really have no weapon, no chemo, no drug, nothing, but working on keeping what you have left of your body as healthy as possible.

I think the heart of David's message...control what you can, where your health is concerned, where your lifestyle is concerned... change what you can, and accept what you can not.

Sorry, I get long winded. Good night.

[shiney sue]

There both good,but worry about fish as well. Thanks to the both of
you Sue

[cyclelops]

I should have couched my post with exactly the dilemma you have, kmeb, because I go thru periods where liquids are all that go down as well. I use Erythromycin, because that is the only stimulant my stomach will handle. I have to be careful with fiber as well, and at times, can't tolerate fiber at all...and ironically protein foods can sit in my stomach for hours when I go thru these horrible periods. Right now, since I went off the dopamine agonist, it seems my stomach is moving a bit better, but the downside is trying to control my severe RLS with Lyrica and an opiate, and I am not sure Lyrica is sitting very well with me, as I feel like I have Alzheimers...it makes me very very tired, but I can't fall asleep and I am very dull...great.
I may end up on a larger opiate dose or back on the dopamine agonist, which will of course aggravate the gastroparesis. People with gastroparesis can develop beozars from fiber...

The two big discrepancies in symptoms and approaches to healing that I see here on the forum are ones of etiology and one of degrees of neuropathy.

Depending on the etiology-it affects the treatment of the disease-and neuropathy is secondary to the disease-therefore-management of the disease is crucial and management of the neuropathy is secondary.

If the neuropathy is 'idiopathic' then there is NO disease to treat, as the 'Idiopathic Neuropathy" is assumed to be the disease...then what?

You can't treat an advanced case of a 'neuropathy producing disease' with lifestyle changes. Period. Autoimmune diseases will require some type of immunological modification, cancer will require treatment, amyloidosis-treatment, etc.

You can try to manage 'Idiopathic Neuropathy" with lifestyle changes as the degree of the disease allows, because that is all that is out there for 'idiopathic' cases. Most of us do end up on some form of pain management...if not other forms of management such as drugs for gastroparesis, or sleep, or movement disorders.

Some lifestyle changes such as meditating, and mindful endeavors can be used by any one, and I know of several members who do a great deal of mindful activities in their art, such as jewelry making....

Some people can't stand up in the kitchen long enough to cook...and that happens to me...a lot. Thankfully, I have family to pick up the slack-not everyone is in that situation...I get very grumpy when this happens and I have to lay down, or pass out..no options.

Some people are on medications that require crosschecking with the Cytochrome P450 chart before taking something as simple as grapefruit juice....and that chart has not caught up very well with nutraceuticals yet.

You're right kmeb....

No pond and froggie for you---but the thunderstorm CD is really nice....by the way it isn't a big bang thunderstorm but gentle rain and quiet thunder...and even that isn't for every one...I sent one along with my son to Iraq, and he told me I was crazy...thunder reminds him of incoming mortar! He was quite irritated with me....rightfully so. (He is back home)

We, as individuals, need to find our own path....no one path is the same--just a general direction.

As far as suggestions, I don't know if you tolerate juice: fruit or veggie, liquified yogurt or plain yogurt. Your energy level isn't going to allow for you to cook or prepare much, so prepared food is the best. I eat applesauce, and Trader Joes, if you have those stores, sells a really good peach sauce...when I am having problems with my stomach, I live on yogurt, sauces and juices and organic milk...and I gained weight on it! Yikes! Trader Joes is much cheaper than some of the other 'organic' stores...and no I dont have any stock in the company. I don't know if they have an online store.

Like I said, how ironic that we pay more for food that is less tampered with.

Again, everyone, always consider
the cause of the neuropathy,
the type of neuropathy,
the extent of neuropathy,
when considering which direction you proceed in your journey of management of this condition.

Exercise is contraindicated in some cases, yours is likely one of them.

Hope that clarifies things.

[Wing42]

Your posts clarify a lot. Thanks.

Your situations are serious and won't be simple to turn around, or maybe even possible to turn around. For all of us, its a waste of time and probably emotionally and spiritually harmful to do anything but accept our condition without complaint or bitterness. Within that calm acceptance however, you might start turning your health around by continuing to learn and trying different things.

Disease onset and progression can be analogous to an avalanche that starts with a small event and then destructively builds on itself. Then the body starts trying to reestablish health. If the damage is bad enough or unusual, the wisdom of our bodies can do more harm than good as in autoimmune conditions or with chronic pain.

But, if we find something that eases the condition or redirects the bodies' attempts to heal, miracles can and do take place. SO, while being accepting, don't give up.

I was thinking of Kmeb while posting that LEF protocol. There is a lot in the article, and throughout this forum. I'm suggesting to not be resigned or cynical, and instead carefully read each posting through for your own personal diamond that might be there in the dirt and rubble. If you're closed to it you might skim the posting, or even just look at the title and nothing else and thus might not see what's there that can transform you. But if you're open and attentive and ready to act, you just might find something that can start to turn your dire conditions around.

As an example, one thing mentioned in the article was probiotics. Can you handle probiotics? If not in yogurt, in a pill? A healthy gut is packed with helpful bacteria that produce a good amount of the protein that supports us, and many vitamins, including the B vitamins that help our nerves function and heal. The intestinal bacteria also fight disease directly by suppressing disease causing bacteria and viruses, and help detoxify harmful things in our food. I know that some probiotics are available in easy to digest liquid form. That would be a start if it helps at all. If you haven't read the protocol carefully, I hope you go back and look for other things like this.

I've been hunting a few times. It's amazing how there's nothing alive out there in the wilderness at first. Then after a time your senses become attuned and you start seeing and hearing a wealth of living things you weren't at all aware of before. That's the state of mind I'm talking about. Even if you don't see a deer or pheasant, that state of mind and it's aliveness and being outside of yourself is well worthwhile on its own.

It's hard to be supportive in a substantive way from afar, but I hope you or somebody else reading this can find useful in my thinking on the keyboard.

[shiney sue]

Yes housing first,just one thing at a time. Thanks Kmeb Sue