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Re: Another year of relief

Posted: Tue Apr 26, 2016 7:51 pm
by notnowdad
Thanks for the update. It sounds like you are doing about as well as can be expected.

BTW, if you are taking Co-Q10 as a supplement you might want to lay off it for a while. I was surprised to read on some website recently that it can interfere with sleep.

Best of luck going forward.

Re: Another year of relief

Posted: Wed Apr 27, 2016 7:07 am
by sleepdancer2
@notnowdad I can understand your eagerness to have conversations about the things you are discovering as you search for solutions. It's hard when you feel you are on to something but others don't share your enthusiasm. Years ago I was on Sinemet and was having an awful time of it with inconsistent results and side effects. My searching let me to information about digestion on a Parkinson's site that helped me alter the timing and content of my diet so as not to interfere with the absorption of my med. I was so excited about my puzzle pieces coming together - but few others shared my enthusiasm. Even now with me successfully using a TENS Unit to control my PLMD I experience the same general response. Unproven theories are a dime a dozen on the internet, so a dose of skepticism can be healthy and is expected. In the end it is usually collective anecdotal evidence that leads science to one day catch up. Keep talking about what works for you. Even if it doesn't help everyone, the one it helps will be eternally grateful.

Re: Another year of relief

Posted: Thu Apr 28, 2016 4:40 pm
by ethan
notnowdad (or anyone else),

I am fascinated by this approach. Have you been able to find any information about oxylates and dopamine? I did a pub med search and some general internet research and came up empty handed. I am wondering what the mechanism is for this. I am also curious as to how many people have had success with this diet and how long it generally takes to determine if it's going to work?
Thanks,
Ethan

Here is a podcast about oxylates:
http://www.voiceamerica.com/episode/887 ... -in-health

Re: Another year of relief

Posted: Thu Apr 28, 2016 4:58 pm
by tommy108
Hi Ethan-- It's difficult to find a connection online between oxalates and RLS. I recommend clicking on Notnowdad's name and reading his posts chronologically. Pretty fascinating.

Also, this article makes a lot of sense. http://www.dailymail.co.uk/health/artic ... l#comments

I am on sixth day of a low Oxalate diet and the results are pretty encouraging. Enough for me to stick with it at least another couple of weeks. I can't claim the instant turn-around like Jim, and there are always other contributing factors, but the diet has without question settled my legs down at night, almost immediately.

Last night I veered from the diet for the first time -- two late night bowls of granola. And BAM the RLS on my delicate system was instant and violent and most unwelcome. "Oats" are on low on some lists, but M on another...and I now know granola is not the same....maybe because it is baked?

Either way, I am learning a ton every day, as I am also testing different neurotransmitters/amnos, like L-dopa and Gaba, in combination with the diet.

Re: Another year of relief

Posted: Thu Apr 28, 2016 5:04 pm
by ethan
Tommy,

Thanks- I will do that. Interestingly enough this past November I had kidney stones...probably from doing a ketogenic diet. I wasn't able to have one analyzed so I am not certain whether they were oxalate stones or not but it has me thinking. I think I am going to give it a go.

Ethan

Re: Another year of relief

Posted: Thu Apr 28, 2016 7:07 pm
by peanut1
RLS can be very complicated because there is no one right thing for everyone, including diet. I eat a Paleo diet and that has helped my RLS a lot in combination with Iron tonifying acupuncture herbs. Nonetheless, at times NOTHING works, including a perfect diet, exercise, various medications, herbs an you name it. However, I will say that diet is important for overall health which is good for whatever you are dealing with.
Recently I realized that I'm dealing with 2 different problems 1) RLS and 2) severe insomnia. I recently discovered the severe insomnia is related to flashbacks and I can tell you that no diet, drug or anything similar is going to cure that. Only when I get the right counseling with the flashbacks (and that is a feat in itself) am I able to sleep. Otherwise, it's a solid 2 hours a night no matter what I eat or what drugs I take.
Unlike the insomnia I can say that I've got my RLS managed very well. But keep in mind that diet is not necessarily a cure for RLS because we all have different conditions that have brought this into severe.

Re: Another year of relief

Posted: Thu Apr 28, 2016 10:21 pm
by ethan
Peanut 1. I completely agree with you- I eat a Paleo diet and sometimes certain foods seem to make it worse (spicy foods) other times I eat crappy (for me this means sugar- I never eat gluten) and I still sleep fine. It has been really hard to pinpoint what makes it worse or better from a food intake perspective.

If you don't mind me asking, are you referring to PTSD related flashbacks?

Re: Another year of relief

Posted: Fri Apr 29, 2016 3:06 am
by ViewsAskew
I find the same - I've been GF, DF as well as sugar, soy, and more free. I've done Paleo. For me, other than excessive sugar and alcohol, nothing seems to change my symptoms level.

Our best guess is that there are multiple forms of RLS - given that there are at least 5 verified genes, this makes sense. Various combinations of genes or individual genes could mean that different things work.

Re: Another year of relief

Posted: Fri Apr 29, 2016 4:33 pm
by tommy108
Ann, i am curious: does Gluten trigger your RLS?

Also, can you expand on your comment of 5 verified genes, I don't understand. I am thinking of doing the 23 and Me gene kit, as I am curious to learn about my genetic history and mutations.

Re: Another year of relief

Posted: Fri Apr 29, 2016 4:55 pm
by Rustsmith
tommy, Ann will have to answer the question about gluten.

As for the genes, according to SNPaedia, there are currently five genes that have been associated with RLS that runs in families. The genes are MEIS1, BTBD9, MAP2K5, PTPRD and a region on chromosome 12 that most likely involves the NOS1 gene.

I did the 23andMe kit about a year ago. It picks up a number of the RLS genes, but not all of them. I found out enough to know that I have three of the genes and I do not have one of the others. But what you need to be aware of is the fact that the FDA will not allow the genetics analysis companies to provide you with health information about your results other than things that are absolutely proven. To get an interpretation of your results you either need to delve into the research literature and learn something about genetic reporting or you have to pay a second company to interpret your results for you.

Of course, at this point all they know is that there is a relationship between the identified SNPs and RLS. They do not know what the various genes actually do, although there is some speculation that the MEIS1 gene has something to do with iron transfer across the blood/brain barrier.

Re: Another year of relief

Posted: Fri Apr 29, 2016 9:44 pm
by ViewsAskew
tommy108 wrote:Ann, i am curious: does Gluten trigger your RLS?

Also, can you expand on your comment of 5 verified genes, I don't understand. I am thinking of doing the 23 and Me gene kit, as I am curious to learn about my genetic history and mutations.


Steve gave a great answer about the genes.

Per gluten, it does not trigger my symptoms. I had many GI symptoms in the past, so I tried many diets. Then I met my future husband and he was celiac. I kept exclusively GF, DF, and corn free for a long while. I learned that dairy or corn are indeed GI triggers for me, but nothing ever affected my RLS symptoms. In the last couple years, I have noticed that sugar late at night will induce a slight increase of symptoms for 20-30 minutes if I ingest it. I've been sugar free (for years) in the past - also didn't create any change for me.

Re: Another year of relief

Posted: Wed May 04, 2016 5:28 pm
by jmg416
First off, thanks so much for posting this along with your original post.

I know you can't give any sort of definitive answer, but how long would one expect it to take to see any results from this. I'm just getting off Kratom now and desperately need to find a solution that isn't pretending to be Bob Marley until my body can't physically maintain a state of wakefulness. So I'm very tempted to give your diet a try. My one major issue would be giving up pizza. I think that might be my single biggest addiction.

Re: Another year of relief

Posted: Thu May 05, 2016 12:26 pm
by notnowdad
One approach would be cut back on oxalate rich foods except for pizza and see how that goes. This could be consistent with Susan Owen's recommendation to make these dietary changes slowly.

On the other hand, if you haven’t been eating a lot of other oxalate rich foods, then the pizza could be your most problematic food. White flour and tomato sauce are both reputed to be moderately high in oxalic acid. Olives are very high. Eating a smaller portion of pizza and adding a lettuce and cucumber salad would probably be a healthful alternative.

I have been able to keep myself completely free of rls while eating reasonable portions of bread and pasta. However, I seem to have more energy and a better attitude if I don’t eat wheat more than every 4 days or so.

My suggestion to someone who may be manifesting a sensitivity to an oxalate rich diet is to experiment with a low oxalate diet. When I joined Susan Owen’s Yahoo discussion group about LOD’s I sent her an email describing my personal breakthrough. She replied with a long personal email including the following:

“We have worked in eleven years with now 22,000 people, and I literally cannot keep up with the number of diseases and syndromes that improve on LOD, and I count that a real pity because someone has convinced the public that high oxalate foods were the healthiest.”

I wish I knew what to tell you about what to expect. All I can say is, I think we may be onto something very significant that could help a lot of people. Ms. Owens reports the her research indicates 60-70% of people suffering from 19 different autoimmune disorders reported positive benefit by reducing oxalate.

If I were currently suffering the many discomforts of rls, I would remove every possible offending food and try to achieve relief as quickly as possible. But I would also be very watchful for any potential negative physical or emotional complications from a rapid dietary modification. I believe Susan Owens probably knows what she is talking about when she warns of the body’s “dumping” of sequestered oxalate potentially causing things to get worse before they get better.

Now that I have achieved virtually complete relief I am cautiously reintroducing various oxalate rich foods in small amounts. It may be that it is really better to keep oxalates as low as possible. I will let you know what I decide as time goes on.

Re: Another year of relief

Posted: Fri May 06, 2016 7:29 pm
by jmg416
Thank you for the additional info. I'm planning on giving the diet a try in the near future. I still just need my body to stabilize from the withdrawal. I'm on day 13 and still feeling physical symptoms. I don't want to start and then judge anything until I can with blank slate.

Re: Another year of relief

Posted: Sun May 08, 2016 7:54 am
by ViewsAskew
tommy108 wrote: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.

All the very best...tommy.


I've felt that way for years. In multiple ways. I think many of us have.