Another year of relief

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
notnowdad
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Another year of relief

Postby notnowdad » Sun Mar 20, 2016 6:12 pm

Now that I have achieved more than a year of virtually complete relief from RLS I continue to believe that following a diet low in oxalic acid has made the difference for me. I offer the following guidelines in the hope that they may help others.

My primary vegetables have been broccoli, cauliflower, cabbage, peas, mushrooms, potatoes, corn, cucumber and all types of lettuce. These I eat in large servings. I eat tomatoes, onions, green beans, Brussels sprouts, celery, bell peppers and chili peppers in small to moderate amounts. I sometimes boil a sliced carrot and add it to the peas. When cooking vegetables I boil them rather than steam them, although I generally roast cauliflower, braise cabbage and grill corn. I avoid unboiled potatoes such as baked, French fried and those that are oven roasted. I only eat small quantities of tomato sauce and olives. I sometimes have small servings of zucchini and yellow squash sautéed in olive oil. Sauerkraut is an interesting alternative to plain cabbage. I eat lots of cucumber pickles.

I have been limiting my fruits to melons, mangoes, apples, green and red grapes (no purple), bananas, pineapple and cherries. I eat very small quantities of berries occasionally . I enjoy small amounts of lemon or lime juice in iced tea, but I don’t throw in the peel because of its high oxalic acid content. I have been avoiding commercially prepared orange juice because I believe the squeezing typically results in oil from the peel getting into the juice. The one time I had a large glass which I had squeezed myself I had quite a bit of leg discomfort the following day.

I avoid whole grains other than oats and corn. A couple of slices of white bread or a hamburger bun are fine, but I wouldn’t eat half of a large thick crust pizza. Pasta is actually low in OA, probably because it is boiled during preparation. I eat corn tortillas very frequently. I eat a lot of white rice. For several months my breakfast included steel cut oats cooked slowly with chopped apple and cinnamon with no problems.

When pinto or black or white beans are served I limit myself to a small portion. I have generally been avoiding nuts and seeds, although I have recently been adding toasted pine nuts to vegetables like green beans. I use black pepper and prepared mustard. I freely eat eggs, red meats, chicken, fish and shell fish. I eat cheese and dairy products most days.

When I began trying to perfect a low oxalate diet, I reduced my coffee consumption and switched from black to green tea. I have gone back to a couple of mugs of “half-caff” in the morning. And I haven’t had any problem with the black tea which is served as iced tea in most restaurants. I drink wine with supper.

In making this post I’m trying to offer a very uncomplicated course of action. As I have said before, there are websites offering advice on low oxalate diets, but I’m just reporting what has worked for me.

After having a been a bit of a health food nut since our first child was born more than 40 years ago, it seems a bit ironic that, in my old age, I have achieved relief by following an old style “meat and potatoes” diet with boiled vegetables, minimal use of “super foods” like nuts and berries, and generally avoiding whole grains and dark green leafy vegetables. On the other hand, while I have been consuming large amounts of animal protein, I have also been making an extra effort to eat lots of “safe” fruits and vegetables.

In the past year I have achieved a level of vitality and well being that I simply couldn’t have imagined. I typically sleep more than 8 hours a night, and various other ailments from low energy to sore feet to chronic sciatica to sensitive teeth have all but faded away. On the occasional nights that I wake up and have trouble going back to sleep I am completely comfortable lying still in bed. If I have even the slightest inclination to toss and turn in bed, I know I can check my daily food diary and I will see that I have been combining a few too many foods that are moderately high in oxalic acid.

Because my remission of RLS symptoms has been nothing less than miraculous, I am eager to know if others can achieve the same results. As always, I wish you all the best.

ViewsAskew
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Re: Another year of relief

Postby ViewsAskew » Mon Mar 21, 2016 4:07 am

Congratulations! Hope it continues to work for a very long time.

It's absolutely worth trying - hope others do.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Skippy
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Re: Another year of relief

Postby Skippy » Wed Mar 23, 2016 3:41 am

I have never heard of the diet you are on. What made you think to try it for rls? I am very happy it is working for you.

notnowdad
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Re: Another year of relief

Postby notnowdad » Wed Mar 23, 2016 9:54 pm

About 6 years ago I made some changes in my diet in the hope of increasing my general energy level. I experienced some abatement of my chronic leg discomfort. For the next 5 years I kept a diary of virtually everything I ate and how I felt each day. My intention was to see if I could find a causal relationship between a food or group of foods and the RLS.

For years I was unable to “tease out” the connection I was looking for. My diet is fairly complex and, because I didn’t know how quickly offending foods would cause symptoms, the problem seemed almost insurmountable. During this period my symptoms rarely abated for long, although they did vary in intensity.

Eventually I realized that spinach and Swiss chard were clearly trigger foods which would cause intense distress in about 24 hours. At that time I had been eating a significant amount of peaches, strawberries and peanuts. My thinking coalesced around the idea that goitrogenic foods as a group should be avoided. Over time I achieved almost complete cessation of RLS symptoms. I confirmed that I could turn the symptoms on and off by eating various trigger foods.

My theory seemed to have a basic flaw in that broccoli, which is highly goitrogenic, did not induce the symptoms. I attributed this to the possibility of an “x factor” in broccoli, most likely sulforphane, which could offset the goitrogenicity. And, although I had achieved great relief, I still seemed to have “low grade” discomforts which might be associated with RLS. While some days I felt excellently well, other days I had very much heightened leg awareness and difficulty sitting for long periods.

About 11 months ago I finally put the last piece into the puzzle. My RLS was brought back by a non-goitrogenic soup with leeks, okra, carrots, tomatoes, potatoes and zucchini. I remembered reading in “The World’s Healthiest Foods” a recommendation that spinach always be boiled because it is high in oxalic acid. I did some research and discovered that my soup vegetables were all moderately high in oxalic acid. By making a soup I had concentrated that acid into the perfect trigger for my RLS. I now concluded that my earlier success from avoiding goitrogenic foods should be attributed to fact that those foods were high in oxalic acid. Many foods like peanuts and strawberries are both goitrogenic and high in OA.

I have read that during digestion oxalic acid bonds with iron, zinc, copper, calcium, magnesium and manganese forming compounds which make these vital minerals unavailable for absorption by the body. My theory is that those of us with RLS may have difficulty maintaining adequate stores of one or more of these minerals. Or we have a digestive system abnormality which undermines our ability to replenish these minerals while eating a normally healthful diet.

tommy108
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Re: Another year of relief

Postby tommy108 » Sat Apr 23, 2016 6:11 pm

Where have you been all my life? :D

Good Lord....sometimes, with this condition, I don't know whether to laugh or cry. Today I am smiling, because I believe the posts in this thread contain the information I've been seeking for a decade. It's like I wiggled a bulb at the end of a long string of Christmas tree lights...and they just lit up.

Some background....I eat a spinach and mushroom omelette for breakfast every single morning. I buy my spinach in bulk at the farmer's market, as I have it in my smoothies 2x a day, and often again at dinner in a salad. Lately I've been buying a lot of organic chard, kale and radish greens as well. I drink several cups of green tea a day and snack on various nuts. Since I am on a low carb diet (to keep weight down) I eat a lot of beans with my meals, (instead of rice or potatoes.) Before bed, (since I don't eat gluten) I eat Buckwheat flakes, or else my favorite: dark chocolate chip granola, with raspberries. And In the evening when I am pacing the kitchen like a zombie... a few spoonfulls of almond butter in between air squats.

Hmmmm...(if you don't get this joke, I have just listed the highest Oxalic acid foods on the list.) I probably don't have to tell you the state my life is in right now. I wouldn't wish this on anyone. And I am filled with compassion and silent blessings for anyone who finds their way to this site/post.

I have felt in my heart for years that my symptoms are tied to my diet. Period. And that this condition is caused by internal factors that can be altered and therefore overcome. Though for the life of me, I couldn't connect the dots or draw a correlation.

In fact when I gave up gluten three years ago, it all went into remission for a few months. So I thought I was gluten intolerant, and my restless legs were a result of an allergy to gluten and grains or something I had eaten. (Funny, I never found a gluten free person that knew what I was talking about.) Then of course it came back with a vengeance.

Then, dairy, the following year. Then I gave up meat. And alcohol. And sugar. Each time a slight reprieve and return. A maddening array of variables and contradictions and missteps. A cupboard full of every supplement known to man, and a different healing modality to give me hope every month. I went to India, I learned to mediate, became a buddhist and a yogi. Fruits, vegetables and nuts. Really. Is there no justice in the universe? How ironic would it be that in my efforts to be ultra-healthy I have increased my own suffering?

Here's another element. For several years, my chief symptom was an urgent and overactive bladder. (Lately the RL has surpassed it.) Even my sleep specialist in WED didn't know what to make of me peeing 5-7 times a night. So...when you talk about Oxalates being connected to kidney stones, bladder, and affecting urination, you have my full undivided attention. Then, this article.
http://www.dailymail.co.uk/health/artic ... pains.html BAM! There's a first. Someone other than me is talking about frequent nighttime urination?

Anyways.....I'll cut to the chase. I am all in. Yesterday I complied the three lists (yes, wildly inconsistent data) cleaned out my kitchen and replaced it with consensus picked low oxalate foods. The plan is to go super strict. Nothing goes in my mouth for the first week that's over 10mg, with an emphasis of those under 5. From there I may ease up. Or not. I've given everything else up already. I'd eat a turn sandwich for dinner in exchange for eight hours of sleep.

After one day on this diet? I slept 7 hours last night. Unheard of in my house. I Woke up and walked around three times, but fell back to sleep within 10-minutes. My journal points to a couple of other elements that could have contributed....so I know, I know, guarded optimism.

But still....

...today i am well rested and optimistic. And that is a beautiful thing to be on a sunny Saturday morning in Dallas, Texas. I am 100% certain I will beat this in the very near future.

Notnowdad? --all I can say is thank you. And bless your heart for these graceful, eloquent posts and for your generosity of spirit. I've read every single one of them. And I wish you the very very best.

Polar Bear
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Re: Another year of relief

Postby Polar Bear » Sat Apr 23, 2016 9:23 pm

tommy - I wish you success and look forward to your updates.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

notnowdad
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Re: Another year of relief

Postby notnowdad » Sat Apr 23, 2016 10:57 pm

Thank you Tommy, and good luck. Let us know if things do get worse before they get better.

The following is part of an email I have sent to my sister, my wife, our four children and their spouses. The first portion of the email is my writing. The second portion is Tommy's post which I haven't copied here. If anything I have said in the email sounds insensitive, please understand that I have felt a bit frustrated by my inability to adequately convey my message and to get people to listen to me, and I have may have allowed myself to convey that frustration in my writing:

I have been going crazy waiting for a direct response to my suggestions about a low oxalate diet for restless legs syndrome for over a year. I keep my browser open to the rls.org discussion board and glance at it several times a day. Each time I press the “refresh” button I watch to see if there are any new replies to my recent posts, and there hardly ever are. And the few that I have gotten have been along the lines of, “Isn’t that nice? Different things help different people. I hope it continues to work for you.” All the repliers seemed to be hardened, skeptical veterans who were satisfied with the not very effective meds which are usually prescribed. And, not at all open to the possibility that the foods that everyone knows are good for you might not be so good for RLS.

I spent a lot of time trying to figure out how to be convincing with my writing and how to enroll somebody to give my approach a try. All along I have just kept thinking, “If I can just get one domino to fall . . . maybe I can get other people’s attention.”

And now Tommy108 of Dallas, Texas, has read my posts. He (or she) joined the website April 20, 2016, possibly in order to post this reply to my last month’s post titled “Another year of relief”. Although there is a note of uncertainty near the end, Tommy seems pretty sure we are on the right track. And, I couldn’t have asked for a more eloquent affirmation (although I suspect the “turn sandwich” Tommy is willing to eat was supposed to end with a “d”).

I know I probably should wait a few more days to hear complete confirmation before I start celebrating. Tommy is only “one day in” . . . but I’m oh so ready to get this off my bucket list. Enjoy.

"Where have you been all my life?

Good Lord....sometimes, with this condition, I don't know whether to laugh or cry. Today I am smiling because . . ."

Rustsmith
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Re: Another year of relief

Postby Rustsmith » Sun Apr 24, 2016 12:30 am

notnowdad, thank you for posting your positive results with the low oxalate diet. In your last note, you state that we are "hardened, skeptical veterans who were satisfied with the not very effective meds". I think that if you go back a couple of years looking at some of the other discussion threads in this forum that you will find that many of these hardened veterans also use diet as a supplement to our medications. Although none of us follows exactly the type of diet that you have proposed with your low oxalates, many of us avoid many of the foods that you have listed.

I know that I follow a modified low carb diet, which when combined with my wife's dietary restrictions has us following something that is very close to your low oxalate diet. In fact, she has been considering a low oxalate system herself. For me, my RLS is so severe that diet alone did not come close to resolving my problems. I believe that diet has helped (possibly more with my migraines than my RLS), but I would not be able to live a life that allowed me to participate in my normal activities without the medications. As for my meds being "not very effective", my own treatment right now has completely resolved my urge to move symptoms and I have been getting 7-8 hrs of sleep each night for the first time in almost a decade. So for me, I would very much disagree that the meds are "not very effective".

You will also find discussions of how paleo diets or similar approaches have been beneficial to many of us. However, most of us have found that diet alone does not adequately control our RLS.

We all need to keep in mind that RLS exists with a wide spectrum of symptoms and levels of severity. There are even research indications that there are different neurological sources for the different RLS symptoms even for those of use with ideopathic RLS, which is often genetic and not associated with things like low iron levels, kidney disease, pregnancy and other diseases. Dietary adjustments, nutritional supplements and avoiding triggers is probably sufficient for the majority of RLS'ers to find relief. For others of us, the first line medications are needed to avoid discomfort and/or severe insomnia. And finally for those of us with the most severe cases, we need to use every available resource to maintain control. That will include diet along with appropriate exercise and the things listed above combined with multiple medications that are probably rotated to avoid issues with tolerance and augmentation.

So, as has been stated multiple times on the board, we are all different. Variations in the severity of our RLS, the root causes and how our bodies react to things like diet, triggers and side effects to medications will all result in situations where what works for one person might actually aggravate the RLS in another. You are indeed fortunate that the low oxalate diet has resolved your symptoms. I only wish that I could be so lucky.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Another year of relief

Postby badnights » Sun Apr 24, 2016 8:12 am

But I have to laugh too, right, Steve? Because we are hardened veterans. The people who post the most here are the ones who have the most severe and refractory cases. So you're getting a biased sample, notnowdad. I agree with Steve's comments. I also apologize for not posting a reply to your earlier posts. You got me looking things up when you first posted about goitrogenic foods, and again when you started this thread. But I didn't reply. You may be reaching people without knowing about it.

I am still on a diet that has helped me, but I plateaued and have not experienced change for a while. It's hard to know what chnages to make, though, and I'd like some sort of evidence that I'm sensitive to oxalates before plunging in and ridding my diet of them - and I also want to keep whatever aspects of the diet I'm on that are responsible for the improvement I've had, which is hard to do without knowing what those aspects are. I am blown away by your 5 years of dedication to recording food and symptoms - I tried that and gave up after a less-than-systematic year, with pretty much nothing to show for it. I know the effort that must have involved, and I'm impressed.

Do you know of any way of testing for sensitivity to oxalates?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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notnowdad
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Re: Another year of relief

Postby notnowdad » Sun Apr 24, 2016 10:19 am

Steve, Please accept my apology. You are absolutely right that I cannot speak for the people who have used the medications. And it is really encouraging to hear from someone who has used them successfully. I denied myself that option partly because so many of the posts I read were written by people who were having difficulty and/or disappointment with them. I appreciate that your sharing of your personal experience comes from a generosity of spirit and I am sure many people are grateful for your contribution to their well being.

My personal quest has been a lonely one, and I admit I have felt inadequate when trying to stimulate discussion and sharing of experiences. Over 500 people have viewed my original recommendation of a low oxalate diet a year ago and until now not one has said they have taken it seriously enough to give it a try. So I suspect there can be a strong inclination for many to dismiss my recommendations with the thought that, “Oh he is just proposing another one of those many, not very effective attempts at diet modification.” My hope is that I have found the one diet modification that can provide to many people the virtually complete relief that I have experienced.

And I hope that I am capable of communicating my experience such that others will accept the invitation to rigorously explore the potential of the low oxalate diet in spite of the fact that it may, initially, cause a worsening of symptoms.

And, in spite of the fact that it is so damnably difficult to find consistent, reliable information about the levels of oxalic acid in many foods. I recently found myself ending up on several websites advising about appropriate diets for pet bunnies when I was trying to find about the level of oxalic acid in fennel.

And, in spite of the fact that it can be difficult (at least for me) to keep track of the cumulative effect of combining small amounts of foods with a moderate level of oxalic acid and thereby triggering a bad response. While I might sprinkle a few toasted pine nuts or walnuts on a “safe” vegetable, I could be flirting with danger if I ate, at the same time, another dish with olives and tomato sauce while having iced tea to drink.

And to Beth, thank you for posting a warm contribution while I was composing my reply to Steve. You seemed to have anticipated what I was about to whine about.

I don’t know any tests for oxalate sensitivity. It seems that sharing of personal experiences is all we have to go on right now.

I appreciate your acknowledgement of my efforts. About 20 years ago, when I was beginning to have real difficultly sitting comfortably for long periods of time, I was in a several days long personal development workshop. Toward the end of the workshop, I was asked, along with all the 100 or so other people, to complete a sentence stating who I was as a possibility. The progress of the workshop and my listening to the other people make their statements had brought me to a point where I genuinely wanted to say something significant. What came out of my mouth, somewhat to my surprise, was, “Who I am is the possibility of people listening to their bodies and discovering their natural well being.” The idea was that, through speaking in front of other people, we could create something powerful in our lives. At the time I didn’t really feel like the author of that statement, and it seemed somewhat strangely irrelevant, but I took it as good advice and have tried to follow through on it.

tommy108
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Re: Another year of relief

Postby tommy108 » Mon Apr 25, 2016 9:02 pm

You have nothing to apologize for, my friend. Having pulled the ultimate coup...you want nothing more than to help more people up onto your life-raft. Though I am not experiencing my remission just yet, when I do I can imagine feeling the exact same way.

I, too, was surprised more people didn't respond to your post. As a first time visitor, I dove in straight to the "I am cured..." posts. The rest can wait. For me, anything less than full remission --without the aid of pharmaceuticals -- is unacceptable.

btw..tried Gabapentin on Wednesday for the first and last time. The only worthwhile thing the "best sleep doctor" in Dallas did for me, (after putting me in a room and having me watch a 45 minute video on sleep apnea..ooops) was to give me a brochure on this organization. Nuff said.

I have noticed over the years folks get a little testy on the topic of what one should or shouldn't put into their body. Understandable. It's very very personal. And emotional. (Had the low oxalate diet tried to restrict my morning cup of green tea and evening glass of Cabernet...I may have had some very strong opinions about its validity!) To each his own. I try to keep my beliefs and judgments in check

In my opinion your case is heavy on the data, and light in the need to be right or to vent an opinion, and above all it is humble. More-so it just makes stinkin sense! To me. I am not looking for a combination of supplements or symptom relievers...(though i did pick me up a tube of that leg cream haha) but to drill down to the very core of what's bothering my body and to give it the support it needs to heal and function correctly. Which I know it is perfectly capable of doing. I don't see this as a "diet" for the sake of eliminating food groups or achieving optimum health.(tell me if I have this right) It's saying, maybe these little suffer crystals build up and bond with essential minerals, preventing their absorption. Likely this creates further complications and a ripple effect...and our bodies squirm and revolt at night.

Thus...even if you weren't in remission, and were just toying with these concepts, I' believe I'd be taking this route. That you're feeling so dang good, have a daly diary to track the nuances, and for 12 full uninterrupted months... makes it all the more convincing. For me. Why?

-- My sensitivity to Wheat and it's history of being the most rapid and powerful trigger I've found.
-- My frequent and urgent urination, day and night.. bladder/kidney concerns that no doctor or specialist has been able to shed light on.
-- The unfortunate and overwhelming emphasis of high OX foods in my diet over the past few years, specifically the past six months. (Other than fish and quinoa, broccoli/cauliflower, there is very little I put in my mouth that isn't on the mid-high end. And many of my daily favorites are on the top 5 offender list.)
-- The steep increase of my RLS symptoms over the past few years, and specifically the past six months.
--The proliferation of new research and support of low oxalate diets to treat similar conditions like fribomailgia/autism/RA, etc.
--Other people point to things like high blood pressure, stress, anxiety, depression. Other than my RLS, I am in perfect health..can run several miles without stopping, have 14% body fat, 140 cholesteral etc. All of my blood, thyroid, and hormone panels come back with flying colors. (i am 46)

A. What I am still unclear of is the topic of brain chemistry, amino acids, dopamine, hormones, etc.and the role they may or may not play in oxalate sensitivity/RLS. Looking back on your recovery, what have you learned about the correlation of those elements?

B. Also, in the past we've all had a travel day or late night out -- and "got by" on 3-4 hours sleep. Why do I feel so much worse than that during the day now, practically unable to tie my shoes; a six year old could whoop me at a game of checkers. It seems to be much more than just lost sleep.

C. Looking back, were there any supplements that you believe got in the way? I have decided to eliminate all of mine and start re-introducing gradually (turmeric is high OX and I've been taking it religiously, and cooking with it, of course.) And were there any supplements/herbs, etc. that may support me on the OX diet?

D. Care to take a stab at why high oxalate leads to frequent urination?

Thank you again, and blessings to you all. An Update on my progress coming soon.

PS -- please feel free to edit my "n" into a "d" for the amusement of your family. They must be so happy for you.

notnowdad
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Re: Another year of relief

Postby notnowdad » Tue Apr 26, 2016 1:38 am

Tommy,

I’m not sure, but it seems like you are “detoxifying” as suggested by Susan Owens, who seems to be the outstanding advocate for a Low Oxalate Diet. She believes that the body sequesters harmful oxalate in various organs and shifting to a LOD causes the “dumping” of these stores. Because I eased off the offending foods gradually over several years, perhaps I was better able to observe the “trigger effect” of offending foods from day to day because my system was clean. With your history of aggressive overuse I suppose you could have a prolonged period of readjustment. My suggestion is to stay the course.

I’m not sure how clearly I have emphasized the correlative benefits which I have experienced, but I truly feel like I have become at least 20 years younger. I have a new vitality, resilience and experience of balance that is simply unrecognizable for me. The word balance may not adequately convey what I’ve experienced. You might want to call it alignment, or vigor, or something else. It is a quality of physical well being combined with mental clarity that totally surprises and excites me. My “old man irritability” seems to have just drained away.

My hypothesis of impairment of mineral absorption may have some validity but it is totally unscientific speculation that “sort of fits” with RLS sufferers’ trying to raise iron levels and such. On the other hand Ms. Owens has some very persuasive descriptions of the functioning of “leaky gut” issues which suggest that the bound oxalates enter the blood stream and raise havoc. She also suggests that the various problems triggered by the ingesting of oxalates can be associated with the use of antibiotics which kill off the oxalobacter bacteria which normally reside in the intestines. I had to follow several prolonged regimens of strong antibiotics about 25 years ago, shortly before I started having these issues in a major way.

My relationship with wheat is a difficult one. I have long suspected that it depletes my energy in a pernicious way. However, I experience this, if it is happening, as something largely separate and distinct from the triggers of RLS, although I have become aware of the effects of the cumulative “layering on” of problematic foods. I’m currently engaged in a “wheat challenge” while, at the same time, trying to strictly limit my exposure to oxalic acid. I haven’t been willing to give up wheat, but I had been limiting myself to once every 4 days, because I believe the negative effects are minimized by letting the body clear before reintroducing the food. My current challenge is to see if I can tolerate the wheat while my maintaining my new found vitality. I had spaghetti today, bread yesterday and the two days before. So far, so good. I will let you know how it goes.

Please stay the course my friend. I fervently hope there is relief and a new vitality on the other side.

Jim

notnowdad
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Re: Another year of relief

Postby notnowdad » Tue Apr 26, 2016 11:20 am

A couple more bits of information in response to your questions:

A link on the lowoxalateinfo.com website leads to an article by Michael Liebman, PhD, in which he says the following which I believe could help account for a tendency to increased urination:

“Oxalic acid has the ability to form a strong bond with various minerals, such as sodium, potassium, magnesium, and calcium. When this occurs, the compounds formed are usually referred to as oxalate salts. Thus, “oxalate” usually refers to a salt of oxalic acid, one of which is calcium oxalate.

Although both sodium and potassium oxalate salts are water soluble, calcium oxalate is practically insoluble, which is why calcium oxalate, when present in high enough levels, has the propensity to precipitate (or solidify) in the kidneys or in the urinary tract to form calcium oxalate crystals.”

Perhaps the need to urinate frequently is evidence of the build up of oxalate in the body. And perhaps these deposits will continue to "dump" for a while . . .

The low oxalate website recommends the following supplements:

Calcium Citrate – Binds with oxalate in the gut and helps remove it from the body.
Magnesium Citrate – Also binds with oxalate in the gut and helps remove it from the body.
Biotin
Vitamin B6 – Vitamin B6 deficiency can cause endogenous oxalate production.
The probiotic VSL#3

A link to a scientific study concerning the probiotic VSL#3 gives the following abstract:

“Both a high dietary oxalate intake and increased intestinal absorption appear to be major causes of elevated urine oxalate, a risk factor for kidney stone formation. By favorably altering the gastrointestinal bacterial population, probiotics have the potential to lower oxalate absorption/urinary excretion. This study assessed whether a 4-wk daily consumption of a commercially available probiotic by 11 healthy volunteers (8 females, 3 males), aged 21-36 y, would decrease oxalate absorption. The study involved the ingestion of a probiotic (VSL#3®) for a 4 wk period followed by a 4 wk washout period. Oxalate load tests, providing a total of 80 mg oxalate, were conducted at baseline (pre-probiotic), and after the probiotic and washout periods. In the total subject population, mean total 22 h oxalate absorption at baseline (30.8 %) was significantly higher than after the probiotic (11.6 %) and washout (11.5 %) periods. However, four subjects identified as high oxalate absorbers at baseline had a particularly marked probiotic-induced reduction in oxalate absorption, which largely accounted for the reduction observed in the total subject population. The overall data suggested that in individuals characterized by high oxalate absorption levels, VSL#3® ingestion has the potential to reduce gastrointestinal oxalate absorption, which could decrease risk of kidney stones and other disorders related to hyperoxaluria.”

And, if I may share one last thought, while the narcotic effect of kratom may have some benefit, I wouldn't necessarily assume it is low in oxalic acid. I looked it up on Wikipedia and those leaves look potentially dangerous to me.

notnowdad
Posts: 29
Joined: Thu Jan 14, 2010 7:41 pm

Re: Another year of relief

Postby notnowdad » Tue Apr 26, 2016 3:57 pm

OK Tommy, I’m back again and I’m very concerned. Please take a moment to consider your situation and ask yourself how you should proceed. I admit I didn’t take it very seriously when I posted that Susan Owens states: “Our group discusses how to help the body more gently detoxify from oxalate.” And then further down on the page, in all upper case, “PLEASE MAKE THESE DIET CHANGES SLOWLY ESPECIALLY IF YOU HAVE HAD HIGH OXALATE VALUES ON LAB TESTS OR HIGH DIETARY EXPOSURE.”

Now I’m not so sure about whether we can be unmindful of the potential risks in these situations.

I am confident that your great physical condition will get you through, but I’m very concerned that you are on an emotional roller coaster. I think you should take whatever steps you can to avoid stress and take care of yourself. This probably includes not making any major decisions and avoiding any risky undertakings. Please seek the support of your friends and family. Take time off from work if you have to.

I realize you are in a hurry to make progress. And I don’t know how, given your extreme use of high oxalate foods, you could make these changes slowly as Susan Owens suggests. When I report to you that I have achieved a restored mental clarity, I must also remind myself that previously I endured a long period of a negative attitude and impaired judgment. If I had to summarize in one phrase my main difficulty in life during that period it would be, “an impatience with the problems life seemed to be throwing at me.” When my attitude was bad, I spent a lot of time finding fault with myself for bad decisions, and in virtually every case there was an element of feeling like I rushed into a bad idea. So please, please, above all, don’t be impatient, and do take care of yourself.

I sincerely hope that you are doing just fine, and I really don’t have anything to be concerned about. Please keep me posted on your progress.

tommy108
Posts: 13
Joined: Wed Apr 20, 2016 9:23 pm

Re: Another year of relief

Postby tommy108 » Tue Apr 26, 2016 5:45 pm

Thank you for your concern, Jim. I am well.

I found my way to the oxalate website yesterday and read up on dumping. So we are on the same path. Imagine that. :)

I haven't really experienced any severe dumping symptoms per se. I am no stranger to cleansing, and detoxing, so decided to go full on. And I am still good with it. I don't know how else to say this, but it couldn't get a whole lot worse than where I was last week. The dumping just feels like more of the same. I had some headaches, and took a prescription napperson, a little constipated. I think the folks they are addressing on the website, etc. are used to feeling good. For them, a little brain fog and restlessness at night

In summary, in the four nights on the diet

--I had one really good night --fri (the first one, you already read about).

--Two really bad nights. Sat/Sun. No worse really than a standard bad night. But surprising and disappointing given I followed virtually the exact same diet as the days before. Reading up on the dumping, thanks to your previous post was key, psychologically to understanding the set back.

--And last night was really good. Virtually no restless legs. Still woke up every 45 minutes- hour. Paced around. But some nice restful sleep in the 3-7 range. I went to hot yoga at 5pm, then 3 hours at a korean spa with hot saunas and a 60 degree cold pool. My legs were like lead. Hard to say what contributes to what -- but that's a winning combo I may lean on more in the future. I also took Tuarine and Gaba in the evening for the very first time. Wanted to hold off, and get a clearer test on just the diet...but I was desperate.

Near as I can tell, my legs are getting way less restless, day and night, but I am still unable to stay asleep for more than an couple hours at a time. I'll take that for now.

Whether the dumping/detox takes a few more days, or a few more weeks....there is no plan B. Stay the course. I do believe optimism helps. And you're right --- overoptimism has been a weakness of mine in the past. Thanks for the reminder....I won't be making any sudden investments.

In terms of my lifestyle and overall well being...I don't know how other folks manage it. If I had a job I would have been fired long ago. I was fortunate to have had some success in the corporate world -- climbed the ladder and jumped off. I took two years to travel the world and visit the most sacred sights on the planet, work on myself, and my spirituality. Bucket list. Now, I am back home putting together a corporate training program based on my experiences and what I learned. Low pressure, low stress. I just need to get well. My mother was an RN for 40 years -- and lives 20 minutes away. ( she is doing back-flips over the oxalate premise)

Stumbling across this site has freed up a lot of attention and given me clarity. Remember, i didn't really identify with RLS/WED til six days ago. Thought it was something else. It sucks to know I have a neurological condition for which there is no cure. Gulp. Still...I accept it fully, yet don't accept it at all. If that makes sense.

I'll go back and read your report in more detail this eve...but just wanted to give you a thumbs up.

All the very best...tommy.


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