Wahls diet for WED? Trying it.

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.
badnights
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Wahls diet for WED? Trying it.

Postby badnights » Mon Nov 03, 2014 2:10 am

Beth, could you provide a reference for the MS study so that I could see more of the details?

In my case, my wife and I both started low carb diets at the beginning of the month. Both of us have neurological issues, in her case secondary progressive MS and for me it is WED and migraines. She is eating a diet based on 25 g of carb/day and I have a 50 g limit. Her primary justification is an attempt a weight loss and my diet is one that has been researched for endurance athletes. We have lots of veggies and replace the carbs with various forms of fat. The key is the mixture and selection of sources of the proper kinds of fat.

After one month, I do not think that the diet has had any impact on my WED. When I get breakthroughs of my current medications, the WED symptoms are generally as bad or worse than before. However, I have seen a dramatic improvement with my migraines. I have gone from 1/week to 1/month, which is reason enough to keep avoiding all the sweets that still are sitting in the cupboard.

Finally, I started this with the goal of changing my diet to boost my abilities for distance running. The idea is that by being in ketosis I will avoid hitting "The Wall" in runs over 20 miles.


Wow, I've been "gone" a long time. My apologies! The study is free, which is nice; the reference is J Altern Complement Med. 2010 Dec;16(12):1343-9. doi: 10.1089/acm.2010.0080 "Rehabilitation with neuromuscular electrical stimulation leads to functional gains in ambulation in patients with secondary progressive and primary progressive multiple sclerosis: a case series report" by Wahls, Reese, Kaplan and Darling. http://www.ncbi.nlm.nih.gov/pubmed/21138391

One of the keys to the Wahls diet is getting the right amount and mixture of veggies. Since everything you eat should be nutrient-dense, most fruits are out. Berries are OK. Your 9 cups a days have to consist of 3 of leafy green, 3 of anti-oxidant-rich brightly colored veg (and berries), and 3 of sulfur-bearing veggies (cruciferous, garlic, mushroom). It is amazing how much vegetable matter this is.

She gets this amount from the American FDA's recommended daily intake of known nutrients, and published amounts of various nutrients in various foods. The assumption that the FDA have it right bothers me. But the approach is interesting. The theory is that we need those FDA-deciphered amounts to do all our required bodily chemistry, and if we lack them, our bodies take short-cuts that produce toxins, or leave things undone, or rob from the liver to feed the heart, so to speak; all of which causes problems if it continues over time and especially if it combines with genetic predispositions to disease and environmental stressors.

Is your wife is eating that much veggies? It might be important. The diet has been really good for my WED - more on that in my next post.

If you have any room left after eating the required veg and meat, then you can fill up on bananas and apples and other foods which are not nutrient-dense. (But never sugar).

Another key to the Wahls diet is no consumption of processed foods, and I think her reasons are that a lot of the nutirents have been destroyed plus additives with uncertain effect.

From the description of ketosis in her book, you are not likely to achieve it while still consuming 50g carb daily. There is a home urine test kit you can buy at a pharmacy to check if you're in ketosis (it was designed for diabetics).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Rustsmith
Moderator
Posts: 4241
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Wahls diet for WED? Trying it.

Postby Rustsmith » Mon Nov 03, 2014 2:40 am

Thanks for the reference. I did a bit more digging when you did not respond and I found it.

As for my 50 mg carbs, it is too much for a normal person to reach ketosis, but with my extra caloric intake due to training, it is supposed to be about right to put me on the edge.

However, today I decided that I will probably drop off of it for about a month. After reading a bit more, I determined that my exertion levels during races burn all of my carb stores in about 2 miles and that I am working too hard for the fat system to keep up. That explained why my quads start to hurt around 2 miles and why I had not strength today halfway through a 10 mile race. The low carb diet is fine when I am running track during the summer (half and full mile distance) and when I am preparing for my last marathon in January, but isn't going to work when I am running faster for 10K to half marathon distances.

As for my wife, yes she is getting her veggies, if for no other reason than I cook lunch and do the shopping. It has been interesting to find produce in the store to create some variation while avoiding the starchy veggies (and the ones that neither of us wants to cook or eat - like brussels sprouts).

For me, the challenge has been getting enough calories. My daily calorie requirement is above the normal values just because of the miles that I run. You do that mostly with good fats, but there is only so much that you can gain that way without throwing something else out of whack.
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
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Wahls diet for WED? Trying it.

Postby badnights » Mon Nov 03, 2014 3:36 am

Wow, where do I start.

The diet
Recap:
In Feb I went gluten free, in late March I started the Wahls diet. In June I reported here that I was uncertain if it was having an effect, because things were improving so slowly, and it was only by looking back and comparing that I could tell it was.

The short version:
My WED has improved. I dropped from 18 mg (sometimes 21 mg) hydromorph contin to 15 mg in June, and I dropped from 15 to 12 in Sept. From time to time now I use only 9 mg in a day. So, in 6 months I have reduced my primary WED med by a third. I have also cut my zopiclone (sleeping pill) in half.

I have not increased or decreased my rare use of levo-carbidopa as an emergecny absolutely-have-to-sleep remedy, and I have added an occasional 75mg pill of Lyrica. I still take 100 mg modafinil (stimulant) daily.

I also still take (daily values- some are split into two doses): 700mg ferrous sulfate, 1000 mg vitamin C, 3000 IU vitamin D, and fish oil. On the advice of the new doctor and/or naturopath I also now take some vitamin K2, Mg citrate (600 mg), and a probiotic without D-lactate-producing bacteria.

I clearly have more energy, less (no?) brain fog, get more restful sleep, feel more refreshed in the morning. I still have episodes of bad WED in the day and sometimes greivous WED at night, but they are fewer. I still have days when I know I need to sleep in or I will not be functional, but I don't have multiple days in a row of being utterly useless.

The price I pay for this is that I am spending almost all of my free time dealing with food, which is the main reason I have not been on the board much. Shopping, putting away, washing, chopping, sauteeing pureeing cooking, cleaning up. Reading reciptes, shopping, cooking. Cleaning up. My life is consumed by food-related things. For someone who used to not bother eating until I felt faint, and then only things that were easy to prepare, this is a big change.

I am still gltuen and dairy free. Despite an intense nostalgia for beer and cheese, I am quite happy to remain this way forever because I feel so much better.

SIBO
Now, my guts. As I mentioned below, I have small intestinal bacterial and yeast overgrowths, including both good and bad bacteria that have gone wild. This diagnosis is based on a test I could only get from a naturopath, but my medical doctor #2 sent me there for it. My medical doctor #2 is convinced that all the tests are valid. My medical doctor #1 (I ended up with two doctors - that's another story) has never heard of any of them and did not express an opinion, though she looked very skeptical.

SIBO is still somewhat controversial - not if it exists, but whether it has pathological consequences in everyone who has it, especially system-wide consequences including neurological ones. Other controversial issues include whether it can be diagnosed by the organic-marker urine test, and how to treat it. It tends to come back after being treated, and I have read that it is important to treat the underlying cause as well.eg. from medicinenet: "Small intestine bacterial overgrowth is usually associated with another underlying illness. Even with appropriate treatment, the relapse rate is high and often depends upon how well the underlying illness is managed and controlled." When I asked the naturopath about this, she deflected the question somehow - I will have to check my notes and find out what she said.

In the conventional-medicine world, SIBO can be diagnosed with a breath test (testing for either hydrogren or D-xylose, both of which are byproducts of the bad bugs that enter your blood and then your lungs), but neither test is truly diagnostic. It can also be detected with an upper gastrointestinal tract endoscopy - putting a camera down your throat all the way to your small intestine, and taking a sample. But this can miss overgrowths that are localized in areas that were not sampled. I did not get a breath test or endoscopy - perhaps because my doctor #2 believes that the urine test she sent me for is diagnostic. The urine test has not found its way into mainstream medicine - and if proper studies don't validate it, never will. But my doctor #2 and naturopath have no qualms about it. It looks for a suite of organic molecules that are produced only by the bad bacteria or yeast; these molecules leak from your gut into your blood and from there into the urine. I have seen this comment about it: "Disappointing results
have also been seen with the measurement of products
of luminal [gut-residing] bacterial metabolism in urine (e.g., elevated
indicans and cholyl-PABA)...." so that does not sound good. I am chasing up the reference he gives for that comment.

I am about to embark on treatment for SIBO. For three weeks, I will be taking twice or three times a day:
[list=][*]a biofilm breaker, to break the film that protects the badterial colonies
[*]a mixture of herbs that have antimicrobial and antifungal properties (to kill all the bacteria and yeast in my guts)
[*]a probiotic and prebiotic i.e. good bacteria and something for them to eat[/list].

I have to take the biofilm breaker first, then an hour or so later the "natural antibiotic". Staggered hours apart, in between, I will take pills of the good bacteria and hope they don't get killed by the next dose of antibiotic.

This procedure filled me with questions, few of which were answered to my satisfaction, but crazy or not, I am going to go through with it. I know something is wrong because even when I don't eat gluten or casein I still sometimes bloat unbelievably after eating. I am still tired a lot. etc. The naturopath says that is because I am not absorbing all the wonderful nutrients I am eating - the overgrowths get to them first, leaving none for me, and also they have damaged my gut lining, making it less efficient at absorbing nutrients.

If the natural antibiotic doesn't work, I get to try the thousands-of-dollars uninsured chemical one.

I have so much research to do, and I've known about this for half a year, you'd think I'd have prioritized the research, but somehow my job always seemed more urgent. Now I have 2 weeks to do it all.

Has anyone else gone through this?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 15822
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Wahls diet for WED? Trying it.

Postby ViewsAskew » Mon Nov 03, 2014 5:45 am

Wow. I've said that multiple times while reading it.

I know that you believe in evidence based treatment - it must be hard to get such conflicting info and not feel that you can find solid validation for your choices.

I always remind my husband - who will only do things that evidence points to - that at one time scientists were sure the earth was flat. That the universe orbited around earth. And, recent examples of things such as that the appendix was pointless or that celiac disease was one in 10,000.

Given the remarkable results you've had so far, it seems worth it - from my perspective - to move forward. I can see, though, why so few people would even try Wahls, let alone stick with it. And, how in the world would a picky eater or super taster manage? Super tasters often hate many veggies because they can't abide the strong taste (to their tongues).

When I was getting my bachelors long ago, the department head of the psych and biology departments (he was one smart guy), was teaching a class about addiction and treatment. He said that whomever figured out how to help people make the decision to throw the cigarette pack out and not buy another, to enter a treatment program for drugs and never use again, to lose that 50 pounds and keep it off - that he's be a billionaire overnight. But, the truth is, we have no idea how to get people to make such decisions and stick with them. It's just amazingly complex.

I applaud you for making the decision and sticking with it. I'm not sure I could have. I look forward to hearing how the next step works.
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.

Polar Bear
Moderator
Posts: 7648
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Wahls diet for WED? Trying it.

Postby Polar Bear » Mon Nov 03, 2014 2:57 pm

Beth, you are so dedicated. Good luck.
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

badnights
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Wahls diet for WED? Trying it.

Postby badnights » Wed Nov 12, 2014 11:32 am

I am giving in I am giving up
for tonight anyway, I broke down and cried
cry; whatever
This insidious vileness has damaged my last few days, it lives in my bones and drives me wild. Ever since I got back from my Vancouver, actually - but off and on. WED worse than usual, foggy days and viciously vigilant nights, bedtimes getting later and later. Oh there were probably more good days than bad, but I have been spoiled! I want them all to be good! Do you know, some people (most of them) have ALL GOOD DAYS? (physically) IMAGINE that.

What did I do wrong? I did not sleep at all Sunday night! OK, my mistake, I forgot my 9 pm meds, and things were going so well I didn't even have symptoms, so I didn't notice til 1:30 AM. It happened to be an after-hockey night, not that I can play (knee operation) but I had brought beers for the team including two gluten-free ones for myself. Was the WED because of the beer? Hard to tell, my reaction to alcohol is so inconsistent, but it seems excessive for 2 beer. The WED started around 3, just as the meds should have been kicking in, and it never died off til 6:30 AM at which point I decided I would just stay awake, since my bedtime was so out of whack.

Missed work Monday and didn't get to sleep to midnight, pretty early, slept pretty well, but today was another one of those days when I couldn't seem to wake up all day and then get all alert at 11 PM. I took the Kill Pill (zopiclone) at midnight (so hard to take after 15 hours of fog are succeeded by a mere 50 minutes of clarity) but couldn't get myself to bed til 2:30 (I hate when that happens, because the time disappears while I stand drooling at my computer or perhaps in a doorway unable to remember if I'm trying to remember which way I'm going or if I was stopping to think about something else).

Still, the delay in getting to bed should have prevented all WED, which does its rotten thing before then. But AGAIN it has driven me out of bed grrrrrr waaaaaah!
and I was so hoping to get up at 8 tomorrow!
I am so tired of not living normal hours!
What a horrid post. This is my vent. I can't even vent well. I am sad about work. Sad because I wanted so much. I want to be better, I want to be normal, I want this diet to work, I want to find out that the SIBO is causing the WED but I'm scared that the WED is causing the SIBO, and the treatment will just hurt me for nothing.

Oh, and I started an egg challenge today. how can I possibly know what effect the egg is having if I'm not stable in other ways.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
Moderator
Posts: 7648
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Wahls diet for WED? Trying it.

Postby Polar Bear » Wed Nov 12, 2014 12:29 pm

Badnights - thank you for venting.... it does good (I hope) to vent.
I hope the tears dissolved the horrible tight and heavy lump of disappointment that gathers in the chest.
The exhausting work and effort that you have been putting in over the last few months will not have been for nothing, everything is learning and now you will decide how you proceed.... which can be a life changing point also.

The desire to feel better, to have hope, is what we hang onto.
I am so sorry you are feeling so bad. :(
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

badnights
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Wahls diet for WED? Trying it.

Postby badnights » Wed Nov 12, 2014 7:34 pm

Off to work, 4 hours late.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 15822
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Wahls diet for WED? Trying it.

Postby ViewsAskew » Thu Nov 13, 2014 6:43 am

This damn disease is so much worse than most people could even imagine. So often we just keep going, and going, and going....even when we are not capable of doing it anymore - at least not effectively.

I always feel as if I'm reading something I could easily have written when I read your posts. Not that it helps - but I absolutely know what it's like to be you. I mean, I can't really know....but I know.
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.

cornelia

Re: Wahls diet for WED? Trying it.

Postby cornelia » Thu Nov 13, 2014 11:10 am

It is a rotten desease which slowly but surely takes your life away until you lose your job and ultimately social contact.
Today, after 15 years of severe RLS I started a low dose of an antidepressant besides Wellbutrin that I tried years ago not for depression though but I had a very strange reaction to it. The new AD is of the wrong sort but low dosed and my neuro said to try it. If it works and doesn't make my RLS worse I will post.
Keep going Beth and maybe change to a DA for awhile, or try changing your opiate to another one. That's what they do with pain patients. After 7 years of OxyContin I changed to methadone and I got another 11 months out of it. Well, sort of of course but I din't have to up the dose.
Wish you the best
Corrie

badnights
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Wahls diet for WED? Trying it.

Postby badnights » Sat Nov 15, 2014 4:46 am

corrie, I hope the AD helps things without impacting your WED. I have actually reduced my hydromorphone lately so I hope to keep on doing that, instead of switching my meds right now. I augmented on ropinirole, so I won't touch that, but for a while I was supplementing with pramipexole on an ad hoc basis.

I had read an article that hinted that taking iron at night might keep you awake. Also - same article or a different one, I don't remember - I read that taking iron daily hindered its absorption whereas taking lots of iron every 3 days and nothing for 2 days would be better. So I had modified my iron schedule, zero pills on day 1, 1 on the 2nd day, 2 on the third day, repeat. In total, since I had been taking 2 pills a day, a reduction. In retrospect, that may have been part of the problem. Every time I've messed with my iron in the past, my WED gets worse within a few days.

I always feel as if I'm reading something I could easily have written when I read your posts. Not that it helps - but I absolutely know what it's like to be you
Ann, I totally agree and ditto. One of the differences is your hypersensitivity to medications or perhaps it's more your tendency to get side effects; I am lucky enough usually to not get bad side effects. But overall, the nature of our symptoms is so similar that either of us could describe the other. We must share a few mutations, that's for sure :) Definitely a few personality traits in common, too. We need to invent an excuse to meet - like a WED research meeting somewhere inbetween Yellowknife and Chicago. Or heck, I would go to a WED research meeting anywhere!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 15822
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Wahls diet for WED? Trying it.

Postby ViewsAskew » Sat Nov 15, 2014 5:39 am

Interesting about the iron....

Let's work on the meeting thing :-).
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.

cornelia

Re: Wahls diet for WED? Trying it.

Postby cornelia » Sat Nov 15, 2014 11:41 am

I have stopped the AD already (it was a tricyclic one). Of course I knew it could make RLS worse but even the low dose I was on made the symptoms very worse. So I stopped. It's no good trying another one.I did try Buproprion in the past but I had a very bad reaction to it and I had to stop, though it didn't make my symptoms worse.

So back to basics.
Corrie

ViewsAskew
Moderator
Posts: 15822
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Wahls diet for WED? Trying it.

Postby ViewsAskew » Sat Nov 15, 2014 10:39 pm

cornelia wrote:I have stopped the AD already (it was a tricyclic one). Of course I knew it could make RLS worse but even the low dose I was on made the symptoms very worse. So I stopped. It's no good trying another one.I did try Buproprion in the past but I had a very bad reaction to it and I had to stop, though it didn't make my symptoms worse.

So back to basics.
Corrie


I am SO tired of my body reacting so negatively to everything. It seems there are so few things that some of us can try. It's exhausting to keep trying, isn't it?
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.

peanut1
Posts: 330
Joined: Sat Jun 04, 2011 8:06 am

Re: Wahls diet for WED? Trying it.

Postby peanut1 » Wed Dec 10, 2014 3:13 pm

There is an iron made by Standard Process that you can take right before bedtime that works well for me since it doesn't have a lot of B in it.. Personally, I would not reduce the iron as that would set me off as well.


Return to “Non-prescription Medicines, Supplements, Diet”

Who is online

Users browsing this forum: No registered users and 6 guests