My journey to 100% relief

[notnowdad]

Many RLS sufferers who adopt a low oxalate diet report a 90 to 95% improvement. Over the past six years I had achieved almost complete relief, but I continued to have some low grade leg discomforts that manifested as difficulty in sitting at my desk all day. The discomfort interfered with my ability to do precise work, and it seemed to impair my mental efficiency. More than a few hours of sitting could become extremely unpleasant. I would frequently also have a very mild “leg awareness” in bed at night.

In early 2020 I stopped going to restaurants. I used the opportunity to avoid “refined, bleached and deodorized” cooking oils. These are the eight commonly available seed oils: corn, soy, canola, sunflower, safflower, grapeseed, cottonseed and rice bran. I cooked with unrefined coconut oil, cold pressed extra virgin olive oil and butter. In late spring I noticed that my usual spring pollen allergy had not manifested and I hadn’t used a single anti-histamine. About the same time, I got two “chigger” bites and I didn’t have my usual allergic reaction. Chiggers are the larval stage of a large, outdoor mite common in the southern US.

Because I also have a very severe allergy to dust mites, I am uniquely qualified to ascertain if I had truly stopped being allergic. This allergy has been very well controlled by my living in a house without carpet, using leather furniture and, most importantly, putting mite proof covers on my mattress and bed pillows. In mid-2020 I removed the protective covers from my bedding. For most of the rest of the year I remained allergy free. During this time I made notations in my journal that my ability to sit comfortably at the desk for long periods had greatly improved. Once in a while I would have minor sinus congestion and drainage that I could associate with an inadvertent consumption of an RBD oil, like eating deviled eggs made with conventional mayonnaise. At one point it took me more than a week to realize that a persistent flare up of sinus problems was due to a new steel frying pan that had been “pre-seasoned” with canola oil at the factory.

In December of 2020, I started having morning congestion and sinus drainage. Then the allergies went away for a while. In 2021 they progressively returned. By June the morning congestion and sinus drainage were back in full force, just like all the previous years of my adult life. I started keeping a record of how many tissues I used in the first hours of each day. Some days it was in the mid-30’s. For months I searched for an explanation. I was still eating exactly the same diet. It didn’t make any sense. Perhaps one of my cooking oils had been corrupted. I tried switching brands. I used only butter for a while. Nothing I tried helped.

In September of 2021 I was reviewing my journal “one more time”. I noticed that in December, when I had been having some allergy issues, I wrote that I had changed the fluoride removing filter in my water pitcher and there was no mention of allergy problems on the following days. I realized that my brand of filter pitchers had changed their product and was not longer taking out fluoride. I immediately started buying bottled water purified by reverse osmosis and the allergies got a lot better, but persisted intermittently at a lower intensity. After about a month of thinking I was on the right track, but there must be something else, I remembered that in 2019 I had purchased a full set of inexpensive “ceramic” non-stick cookware that was both PFOA and PTFE free. Over the latter part of 2020 and the first months of 2021 I had switched back to the standard non-stick cookware that is only PFOA free. So, I stopped using all cookware which contained either type of these manmade fluorocarbons. And I bought some new filter pitchers that remove fluoride from water.

Over the past month I have become, once again, completely allergy free. And, the lingering vestiges of RLS, which had returned along with the allergies, have completely vanished once again. I feel very secure in concluding that the fluoride and the RBD cooking oils have a synergistic effect in my body that cause me to have allergies and to manifest RLS. My hope is that I have found the environmental influence which caused me to lose my ability to tolerate normal amounts of oxalate in food.

Toxic levels of fluoride impede iron absorption and utilization, damage the lining of the intestines, impair thyroid function, retard melatonin production and cause oxidative damage to the liver. I think I am more susceptible than most people to fluoride. I am currently making extreme efforts to avoid fluoride. I have stopped eating citrus fruits and grapes. I have switched from wine to whiskey. I’m eating less shrimp. I’m using fluoride free toothpaste. I am hopeful that my body will be able to recover to the extent that some of these measures can be relaxed in the future. Perhaps my liver will heal to the extent that it will stop inappropriately producing excess oxalic acid whenever I consume gelatinous, meat based, glycine-rich soups and stews.

My dietary changes led to a drop from 164 pounds to my college age weight of 140, even though I wasn’t making any effort to lose weight. When my allergies came back following exposure to fluoride, my weight went up a bit, but it has since gone back down. My increase in vitality is simply amazing. My legs consistently have an energy and “aliveness” that I haven’t known for 40 years.

Iodine, fluorine, bromine and chlorine are the common elements in the chemical group known as halogens. Some doctors recommend avoiding bromine and chlorine in addition to fluorine because they all impair thyroid function. Bromating of flour is common in this country. I avoid bromine by baking my own bread with unbromated, unbleached, unenriched flour. My Clearly Filtered water pitchers remove chlorine and chloramine in addition to fluoride. I avoid all canned foods and drinks because the can liners may have the same manmade fluorocarbons as those used in non-stick cookware.

I believe I have turned another corner in my journey to wellness. I hope some of you find this information useful. In the interest of science I will continue to sleep with the dust mites. I will update you on my progress. Jim Hejl

[Polar Bear]

Oh my. What a journey and such dedication. Well done.

[badnights]

Jim - thank you so much for this. There seems to be much here that might apply to me. I felt nauseous and headachy for 3 hours after the dental hygienist gave me fluoride-laced water to rinse with. I doubt I swallowed more than a couple of millilitres, if that.

I have been filling pitchers of water and placing them in the fridge for 12 hours to let the chlorine evaporate. I don't know if that's long enough, but I used to leave it on the counter in a big covered pot for 24 hours. I've been doing this since 2014, which is when I made a lot of changes (mainly going on the Wahls diet) that allowed me to reduce meds by over half. Maybe the de-chlorination helped more than I thought.

I am horrified at all the places fluorocarbons hide. But I am so grateful you've have done this research. I will gradually transition away from canned food - I don't use much anyway. Ditto for grapes, citrus friuts, wine, and shrimp. And I never did use coated pots, I never trusted the coatings. But pre-seasoned in canola oil! I wonder if that would apply to cast iron pans. Who would have thought! Well, you did

I should do my own research too. I didn't know there were fluorides in fruit! I eat a lot of dark raisins boo hoo!

[Frunobulax]

Iodine supplementation might be worth a try, too.

By chance I started a high-dose iodine treatment a few days ago and there is some marked improvement. Not related to my RLS (I'm symptom free if I stick to my regular dose of Oxycodone -- I'll try lowering my dose at some point but not right away), but I have less trouble falling asleep, I'm not freezing anymore in a warm room, I have less constipation (from my opioids) and seems some dumping of something started (skin conditions and flare up of joint pain, while my lower back pain got better). I'll let you know in a few weeks if I see permanent changes.

My iodine intake follows the protocol of Sarah Myhill, who uses iodine and vitamin C as cornerstones of her standard regime (along with a keto paleo diet). I thought I was doing OK with iodine in salt, and I even tried iodine supplements (containing 300 mcg a pill I think) which didn't do a lot for me, but these doses are miniscule compared to what Dr. Myhill recommends. In her book "The infection game", which is well written and researched, she recommends 2 drops of Lugols solution 12% (dissolved in a glass of water) daily on a permanent basis for chronic illnesses, and liberal use externally for all skin conditions that could be related to bacteria or fungi. Other doctors recommend even higher doses, especially at the start of the treatment. She also recommends a self-test for deficiency: Draw a circle on your skin using Lugols solution. If the yellow color disappears after 24h then you are deficient.

Dr. Myhill believes that most of us are iodine deficient, because (a) our ancestors had a higher intake (ate much more fish than we do) and (b) iodine is displaced by the other halogens that we are exposed to, especially fluoride. She writes some of that on her webpage https://www.drmyhill.co.uk/wiki/Iodine_ ... ehold_word. I think she has a point, because iodine is one of the "forgotten treatments" -- stuff that doctors used to do hundreds of years ago and forgot when newer medication was available. (Even though antibiotics have saved countless lives, they also caused the medical profession to focus very much on new drugs -- assuming that some day we would have drugs for all diseases. Consequently treatments like hydrogen peroxide, iodine and fecal microbiota transplants were kind of forgotten, some of them were rediscovered in recent years.)

I'm not sure if I should write this (and basically recommend high-dose iodine) because the dosage she recommends is a much, much higher dose than what is recommended as daily dose by the WHO and similar institutions. However, very high doses have been used in the past (up to WW2, known for treating war wounds) and there are hardly any reports of adverse events. But clearly you should talk to your doctor before trying high-dose iodine supplementation yourself. Also make sure to be tested negative for Hashimoto antibodies, because iodine is not recommended if you have Hashimoto (I don't remember exactly why though, I think iodine might increase autoantibody production).

[notnowdad]

Frunobulax, I have some thoughts to share and a funny story, but first I want to report that in the days since I started this thread my complete relief from RLS has continued unabated except for three successive days when I ate some “organic” asparagus. On those 3 days, starting the day after I first had one third of the asparagus, I had some discomfort while sitting at my desk and I had very noticeable “leg awareness” while waiting to go to sleep in bed. My conclusion is that I’m still vulnerable to RLS if I don’t avoid oxalates. I had hoped that my relief from allergies would coincide with a lessening of sensitivity to oxalate. So far that doesn’t seem to be the case. In the past I have sometimes been able to eat organic asparagus without reacting because, as I have shared elsewhere, I believe it is not sprayed with the oxalic acid solution that is typically applied to “regular” fresh asparagus and some other vegetables. For the time being I am avoiding all asparagus. I am still having good luck with organic artichokes.

My story is that about 11 years ago I got the idea that broccoli was a miracle food. At the time I was eating a “healthy” breakfast of “Familia” Swiss muesli, a very high oxalate cold cereal of whole grains and nuts. As an experiment I started eating a large bowl of raw broccoli dressed with vinegar and olive oil instead of the cereal. There was a very noticeable reduction in the severity of my RLS and, because I had no idea about the effect of oxalates at the time, I decided that broccoli was providing the relief and I was ecstatic about the improvement I thought I was getting from it. However, over the next several months my weight went from the high 160’s, the highest I had ever been, to 188. And I had so little energy I could hardly get through the day. I wondered if I had contracted “chronic fatigue syndrome”. My doctor didn’t realize I was crushing my thyroid with the highly goitrogenic raw broccoli. My chiropractor suggested I might need testosterone supplementation. My doctor reluctantly prescribed the testosterone cream after we seemed to have exhausted every other possible solution to my incredible fatigue. I bought the medicine but I postponed using it. I found the “Blood Type Diet” which got me to exploring other options. I got off both the grains and the broccoli. Over the next couple of months I lost 24 pounds. I began to notice that the intensity of my RLS varied from day to day. I realized the Blood Type Diet wasn’t a final answer for my RLS, but out of the experience with it I began my investigation into whether I could control my RLS through diet. The ironic humor of the story is that overindulgence in a “miracle food” drove up my weight, made me vulnerable to wide swings in blood sugar and almost caused me to become bedridden.

Quite some time after I was able to alleviate most of my RLS with a low oxalate diet I was still vulnerable to inconsistent energy due to swings in blood sugar. I suspected the problem was thyroid related. I wondered if I was getting enough iodine. Painted some iodine on my abdomen and tracked the disappearance interval. Thought about taking supplemental iodine. Decided instead to try a dietary experiment and avoid all goitrogenic vegetables (the crucifers) and soy. Got some very dramatic improvement in my susceptibility to blood sugar swings. When cherries came into season I overindulged in my favorite fruit day after day. Very quickly started returning to the chronic fatigue distress. Found Dr. Kresser’s website and learned that fruits of the rosacea family are goitrogenic. I started avoiding cherries, pears, peaches, plums, apricots, blackberries, raspberries and strawberries as well as the crucifers. This seemed to completely cure all my blood sugar issues. A while later I got into eating an apple every day. My blood sugar issues returned. I reviewed the info on rosacea fruits and realized I hadn’t noticed that apples are also of that family. Now that I have had the insight about the damage done by fluoride and the other halogens I am hopeful that I can begin eating these goitrogenic foods again someday. But I haven’t begun that “challenge” yet. Cooking can remove most of the goitrogenic effect of vegetables. Boiling is most effective. Fruits are probably lower in goitrogenicity but they are usually enjoyed raw.

You might want to look at “The Thyroid Reset Diet, Reverse Hypothyroidism and Hashimoto’s Symptoms with a Proven Iodine-Balancing Plan” by Alan Christianson, NMD. He seems to have had great success with thyroid impaired patients by reducing their iodine intake, especially in the form of iodized salt. He has introduced the concept of “iodine intolerance”. I suspect that, if iodine intolerance proves to be a useful concept over time, it may be due to a broader “halogenic overload” resulting from overexposure to the whole group of chemicals.

And, Polar Bear and badnights, thank you for your thoughts.

[Frunobulax]

You might want to look at “The Thyroid Reset Diet, Reverse Hypothyroidism and Hashimoto’s Symptoms with a Proven Iodine-Balancing Plan” by Alan Christianson, NMD. He seems to have had great success with thyroid impaired patients by reducing their iodine intake, especially in the form of iodized salt. He has introduced the concept of “iodine intolerance”. I suspect that, if iodine intolerance proves to be a useful concept over time, it may be due to a broader “halogenic overload” resulting from overexposure to the whole group of chemicals.

Personally I couldn't imagine where I would get too much halogens, because I drink filtered water exclusively (with a decent filter that eliminates at least 99% of halogens) and I don't eat salt that is fortified with iodine. Also my TSH is in the low normal range, far away from hypothyroidism.

Unfortunately there doesn't seem to be robust research if we have too much or too little iodine. But we do know that some nationalities (like the Japanese) have a lot of iodine in their diet because they eat a lot of fish, and by most standards these are healthier than western civilizations. I'm not sure if iodine consumption is in any way a cause for this, but at the very least a high iodine intake doesn't seem to be harmful on a population level.

Also I've heard that we used to put iodine in bread, but have replaced this with bromide which competes with iodine in our body (not sure if web sites like https://borntobeboomers.com/the-truth-a ... r-thyroid/ are reliable, but found several reports on this). According to studies, apparently quite a lot of people in western civilizations are iodine deficient. This paper even talks about 2 billion people suffering from iodine deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6284174/.

Bottom line, I believe that iodine is most likely comparable to salt: It's safe for the vast majority of the population, but harmful in large doses for some groups with certain diseases. In any case the RDA is established to avoid one disease, and one disease only: Goiter. There is no research that I know of on whether a higher iodine intake is healthy in general. (Just as ferritin levels of 10 are considered OK by many doctors as long as there is no anemia, and iron status is measured only by anemia -- without considering the myriad of other symptoms that iron deficiency can have, including RLS.) As I said, it is known that iodine can accelerate damage for Hashimoto patients, but I haven't heard about iodine risks for patients with a healthy thyroid. I wouldn't generalize that iodine is bad for us just because some people apparently do better on a low iodine diet -- autoimmunity (typical cause of hypothyroidism) is tricky and people with autoimmune conditions need to avoid a lot of things that are positive for healthy people, including anything that stimulates the immune system...

[Rustsmith]

My chiropractor suggested I might need testosterone supplementation. My doctor reluctantly prescribed the testosterone cream after we seemed to have exhausted every other possible solution to my incredible fatigue.

You might still want to pursue the testosterone angle, but with more info this time around. This isn't so much a matter of RLS as it is energy and possibly other subtle symptoms that you may not have noticed, until you think about it. So, ask your GP to order two different testosterone blood tests. You need both total testosterone and free testosterone.

I have had a chronic issues with depressed mood, loss of appetite, low energy, poor motivation and loss of libido. I will ignore the hair loss since that is hereditary.

I was at the point of wondering whether I was going to have to "suffer" with all of this for the remainder of my life until I discovered all of the various symptoms for low T. I saw a mens' health specialist two weeks ago and found that although my total T was on the high end, my free T was very low. I started injections at home last week and although it is supposed to take about 3 weeks to help, I have already noticed a major change in my life. Food tastes better, I can experience happiness for the first time in several years, I have energy levels that I haven't had in several years, etc.

In my case, I attribute the low T to chronic use of opioids. I don't have the option of getting off of them, so testosterone supplementation seems to be the answer. There are potential negative consequences of supplementation, but my doctor will be closely monitoring my blood tests and I know what to look for in the way of external signs. If only I had done this several years ago when I first started having issues ...

[Macadwel]

Hi Jim,
I know your post is a few years old, but I am hoping you are still willing to discuss your low oxalate diet journey. I have read your previous posts, on this thread and others, and read about the low oxalate diet on other forums and the web to get to know what the diet is all about and how it might help RLS. I am ready to take the plunge and will be starting to add lower oxalate items and take out higher oxalate items starting tomorrow. I will be keeping a diary of how my legs feel to make sure I am on the correct path. I plan on taking this slowly as I don't want to go into detox.

I read somewhere that turmeric is high in oxalate and as that is a supplement that I take nightly, I took that out of my regimen last night, and I can say I slept better last night than the night before, wishful thinking maybe, maybe not.

To give you some background, you may have read some of it in other posts, I have had RLS all my life, remember having it as a kid, but then they called it growing pains, it has been bad enough to be on medication for the past 35 years, been through all the traditional treatments, been through augmentation, went on methadone had a very bad reaction to it, and had to go off of it, and back on to tramadol. The doctor would not put me back on my 100 mg three times a day of tramadol, they ended up putting me on 200 mg extended release with 2 extra 50 mg in case of breakthrough pain, haha, like that wasn't going to happen. I am also back on 100 mg pregabalin twice a day morning and evening, and 75 mg pregabalin three times during the day. The pregabalin has caused me to fall asleep at work, forget my thoughts, and made me extremely listless. Pregabalin does help, but honestly, it only helps for a short period.

I have a chance to get a spinal cord stimulator through a trial, but if I can change my rls through diet I would rather change my diet. I will keep you and anyone else who would like to know how the old diet goes posted on the rls symptoms.

Thanks for all your research and notes on your journey, I am hoping my journey proves to be as freeing of the rls symptoms as yours was. I appreciate all the other people who have posted about their diets and their journeys for rls. It has amazed me that for the amount of pain we are all in, there is no better way to manage the pain.

Mel

[notnowdad]

Hi Mel,

I think you are doing the right thing and will be surprised at your good results. As you formulate your diet plan please keep in mind that many vegetables and fruits in the grocery stores have been sprayed with an oxalic acid solution in order to “preserve freshness and nutrients” during storage and handling, but organic produce is not so sprayed. Also, gelatin, collagen and gelatinous soups and stews can stimulate the liver to make excess oxalic acid. For the same reason, if you take magnesium supplements (which I heartily believe in) make sure you don’t take magnesium glycinate. Reducing dietary oxalate is only half the problem. Avoiding gelatin and its glycine should help to damp down your liver’s tendency to overproduce oxalic acid.

My own story with RLS continues to evolve. I have been reluctant to promise people complete relief through my newest protocol of avoiding ingesting fluoride and the refined, bleached and deodorized cooking oils made from seeds. However, after more than a year on this regimen I really believe I may have completely recovered my ability to tolerate normal amounts of dietary oxalate without experiencing RLS. And I realize that this protocol is so limiting that most people will find it too onerous. For that reason it may take years to recruit enough participants to establish whether it can work for others.

In writing the following paragraphs I was trying explain to a scientist friend my plausible theory for why it works, along with a summary of what is involved. Many scientific studies link fluoride to damage in the small intestine. The information about bile salts in the colon leading to inappropriate absorption of oxalates which would normally be excreted came from a study of patients with impaired small intestines due to cystic fibrosis.

Bile salts facilitate the absorption of fats in the small intestine. After performing this function the bile salts are reabsorbed through the intestinal wall. If excessive amounts of bile salts enter the colon they damage the mucosa and this allows inappropriate absorption of oxalates. I suspect the presence of bile salts in the colon may also damage the ileocecal valve and lead to the small intestine bacterial overgrowth (SIBO) which is characteristic of RLS sufferers.

I believe over exposure to fluoride damages the lining of the small intestine and contributes to bile salts inappropriately entering the colon. Ingesting the common refined, bleached and deodorized cooking oils made from seeds (corn, canola, soy, etc.) exacerbates the problem of bile salts inappropriately entering the colon. Simultaneously avoiding ingesting fluoride and the RBD cooking oils seems to have restored my ability to tolerate oxalate without experiencing RLS. I am currently encouraging other RLS sufferers who are low oxalate dieters to try avoiding fluoride and the seed oils, but as of now I haven’t established that my success can be replicated. I suggest to them that my substituting unrefined coconut oil as my primary cooking fat may be related to my success as it is more easily absorbed and it may even help to heal the fluoride damage to the intestinal lining.

Avoiding fluoride entails filtering drinking and cooking water, avoiding fluoride rich pesticide residues (especially in American wines) and avoiding nonstick cookware that isn’t labeled PFOA and PTFE free. The liners in most food and beverage cans may be similarly toxic. Many popular commercial beverages are made with fluoridated water. Many of the most commonly used medicines today contain fluoride.

The overproduction of oxalic acid in the liver is probably also due to the toxic effects of fluoride. A textbook on anesthesias explains the oxalosis triggering effect of methoxyflurane thus: The free fluoride in methoxyflurane appears to stimulate excessive oxalate production by the liver.

[Macadwel]

I find your theory interesting. I cook with well water and drink spring water, though the spring water does come in plastic jugs. I have been trying to eliminate plastic from my life as I believe plastic is the bain of our lives. When we started to package everything in plastic it seemed, and I am not a scientist, that more and more people began to get sick.

I do try and purchase organic vegetables when possible, the price of food right now has been a hindrance, but I will have to be very selective and start buying more organic. All my meat is organic as I work with a local farmer. I grow my veg in the summer, so that will be organic soon. I don't use non-stick pans, so I am good with PFOA and PTFE, I am pretty good at looking at labels too.

I don't think I can give up my toothpaste but I will ensure I don't swallow any residue.

I am keeping a diary, I will check back in soon to let you know how things go, though I am not cutting all oxalates out yet, as I don't want to have all the issues some have had.

Thanks!

[Macadwel]

I find your theory interesting. I cook with well water and drink spring water, though the spring water does come in plastic jugs. I have been trying to eliminate plastic from my life as I believe plastic is the bain of our lives. When we started to package everything in plastic it seemed, and I am not a scientist, that more and more people began to get sick.

I do try and purchase organic vegetables when possible, the price of food right now has been a hindrance, but I will have to be very selective and start buying more organic. All my meat is organic as I work with a local farmer. I grow my veg in the summer, so that will be organic soon. I don't use non-stick pans, so I am good with PFOA and PTFE, I am pretty good at looking at labels too.

I don't think I can give up my toothpaste but I will ensure I don't swallow any residue.

I am keeping a diary, I will check back in soon to let you know how things go, though I am not cutting all oxalates out yet, as I don't want to have all the issues some have had.

Thanks!

[Macadwel]

Hello all and Jim,
I wanted to let you know how I was doing on the low-O diet! I have been on it a week, but to be honest, I am a meat and potatoes, veg, some pasta, bread, and dessert kind of household so giving up some of the food was not too hard, the potatoes have been the hardest. I have stayed on most of my pill regimen 1- 200 mg extend Tramadol, 2 - 50 mg tramadol for the breakthrough pain, 2- 100 mg pregabalin morning and night, and 3 - 75 mg pregabalin during the day.

I still had some oxalates in my diet as I did not want to have an oxalate dump, so I had at least one a day for three days, I did notice my RLS was less during the day, and I have RLS 24/7. I then stopped the O's and went Low O's and I did notice a difference, I actually slept through the night and did need not to wake up at 2 am for my usual extra dose of 2-50 mg tramadol and the next day was great! That day I stayed on the Low O's diet kept taking my usual meds, except for the breakthrough, and things were going well until about 8 pm that night when my legs went crazy, not a bad crazy just you know you have RLS, and it is just enough that you cannot sleep, the Tens machine doesn't touch it, you cannot sleep, your meds don't touch it, it is just annoying enough that nothing touches it. That night tried to go to bed and tossed and turned, just couldn't sleep, took my extra meds, went back to bed, tossed and turned some more, and took a Hydro I have and that didn't touch it, I finally went to bed at 3:30 am. That morning was fine and my legs were okay but not great. The only thing I could think of was the broccoli I had that night for dinner, I only had two heads of broccoli because I was worried they would be a problem, Jim I saw you mentioned we should stay away from this type of veg, so I will stay away from it moving forward, I can only think this is what caused the issue. That was Wednesday night. The rest of the week was okay, Thursday, Friday, and Saturday, my legs were not bad but not great, I took my meds they worked, my legs stayed good, and I slept. Then Sunday, last night, during the day I had no issues, I stayed away again from the O's and went to bed with no problem with the legs, did not need the breakthrough tramadol during the day or the night before. Woke up at 1:30 am and shot out of bed my right leg only was so bad, I thought I was going to jump out of my own skin took the 2 tram, tried to lay back down as I was so tired, had to get back up and walked around because my leg just would not let me sleep, walked on the cold floors, that usually works for me, laid back down, 2:20 am leg is still really bad , took extra hydro, 30 minutes later still no relief, took one more hydro 30 minutes later finally relief. It was the worst pain/creepy crawly RLS I have had in a long time. The only thing I can think of is I had blueberries and ice cream but both of those were on the good list. If I am wrong let me know. I had eggs and bacon for lunch, no breakfast, macaroon/blueberries, and ice cream for dinner, not the best choice but had my baby grandson all day and did not have time to cook.

This morning I am doing fine, a little tired, legs seem okay. I am going to ask the doctor to put me on hydro's or oxy's because they work so much faster than tramadol, which takes 2 hours for me. I just can't wait that long when it is the middle of the night. I have high hopes for this diet, it seems to help and I am in it for the long haul. I wish there were more vegetables on it, I am tired already of peas, but I will keep going and keep you updated.

Jim if you have any websites with recipe ideas, that would be great! I bought a cookbook but was only able to get a few recipes out of it. I don't eat fish, so I am limited to beef, chicken, and pork. I am going to start the supplement you mention above, so I am hoping that will help too.

Any tips from anyone else who is on this diet or another diet similar would be great!

Mel

[Frunobulax]

I believe over exposure to fluoride damages the lining of the small intestine and contributes to bile salts inappropriately entering the colon. Ingesting the common refined, bleached and deodorized cooking oils made from seeds (corn, canola, soy, etc.) exacerbates the problem of bile salts inappropriately entering the colon. Simultaneously avoiding ingesting fluoride and the RBD cooking oils seems to have restored my ability to tolerate oxalate without experiencing RLS.

It's always difficult to establish causality... Considering that nearly 100% of the western population is confronted with additional fluoride (in toothpaste, water and all the other sources), but only 10% have RLS, you have to question if (a) fluoride is causal, and if so, it would be something that depends on dosage and genetics, or if (b) high fluoride is just a side effect of of whatever causes RLS. Say usually our kidneys and detox system would handle excess fluoride (just as they handle excess salt, and numerous other substances that we come in contact with), but if that system is broken, then we'd see a buildup of fluoride and all these other substances but fluoride would not be causal.

In the end, if you suspect any substance (be it oxalate or fluoride), there is only one way to find out if it's causal: Remove it for a sufficiently long time (which may be years) and see if it makes a difference. But given that it's so difficult to estabilish causal causes for RLS, I consider it likely that there are several different mechanisms leading to similar symptoms. For example, some of us clearly fix their RLS issues by a low ox diet, while others (like me) see only very little improvement.

What I'm trying to say: If you are avoiding oxalates and fluoride and it solves your RLS issues, then you have established causality for you (assuming you didn't change any other variables). But you don't know if the same changes would work for 0.01% or 99% of the other RLS sufferers.

[notnowdad]

Hi Mel, I really sorry you are having such a tough time. A few thoughts:
1) I have come to believe the low oxalate approach requires organic vegetables because of the problem with non-organic ones being routinely sprayed with oxalic acid solution. I think there is the same problem with most fruits other than melons.
2) I also believe that. for many of us, excess oxalic production within our livers is just as much of a problem as dietary oxalate. And, although I haven’t found any directly relevant science on this, I believe fluoride is the primary cause. Because pesticide residues on vegetables and fruits are frequently high in fluoride, this could be another good reason to eat organic. Apparently a lot of grains are treated with fluoride pesticides during storage and end up being fairly high in fluoride. I typically buy organic pasta and breads but have been okay baking my bread and pizza with high quality flour like King Arthur brand which isn’t organic.
3) Many of the most popular medicines contain fluoride compounds which may contribute to the problem of endogenous oxalic acid production. That doesn’t seem to be an issue with tramadol and pregabalin, but if you are taking other medicines it may be something to consider.
I hope my suggestions don’t seem too onerous. I have had great success. I don’t seem to have any RLS anymore after having started at a point where I had been suffering all day long, every day. I don’t know if my success can be widely replicated but I’m doing my best to figure what matters and why. As a final tip, when you are having discomforts, look at what you ate yesterday, not today. Jim

[Macadwel]

Hi Jim,
Thanks for your quick response! I wouldn't say it has been too much trouble since I just started the diet a week ago, I am pushing it from what others have said! I did not know that fluoride was an issue with pesticide residue, I used to purchase organic until the market took a turn, but now will make a concerted effort to read labels better when I purchase items. I do grow heirloom veg in the summer and go to farmer's markets for fresh and I do purchase organic meat, from an organic grass-fed farm, I know the farmer and know the beef is not grain-finished so the beef is truly grass-fed, I also purchased organic pork from them too this year for the first time. I don't purchase my chicken from organic but will start to now knowing what you said about the fluoride and see if that makes a difference.

I was able to find some frozen organic vegetables that were at a good price so that is good, and I found a good website that listed the amount of Oxilates in the food items to make it easier to figure out if they were high to low Oxilate food items.

If I can solve my RLS through diet, and start to add back food items by eating organic, then that is a win for me! I will see how this week goes using the organic veg I purchased and organic meat!

Appreciate all your help, take care, Mel