Archive for September, 2014

I’ve Been Banned from For Good

ban-youre-banned1All this crazy talk about non medical cures for RLS has got me banned from again. This time I suspect for good.

It really is a crime that an organization that gathers people together in a unified search for a solution, would ban someone that offers proof that there are solutions.

They are so tightly bound to the pharmaceutical industry, it’s frightening.

I realize that they’re no different than any other foundation, it’s just that I’m seeing one up close for the first time.

I’m mostly frustrated because they’re misleading thousands of people, saying that their only chance at relief is through medication.

These are people that trust that they are being told the truth, and they’re not.

They’re being horribly misled.



Comments (15)

Why CAN’T There be a Cure for Restless Legs Syndrome?


Hopefully those of you that are stuck in a deep, seemingly hopeless pit with your RLS, can draw some inspiration from this study.

In 1993, the Institute of Noetic Sciences published “Spontaneous Remission: An Annotated Bibliography.”

In this work, the authors defined spontaneous remission as “the disappearance, complete or incomplete, of a disease or cancer without medical treatment or treatment that is considered inadequate to produce the resulting disappearance of disease symptoms or tumor.”

From their website:

“The Remission Project catalogued the world’s medical literature on the subject and the resulting book was the largest database of MEDICALLY REPORTED cases of spontaneous remission in the world, with more than 3,500 references from more than 800 journals in 20 different languages.

An example of “pure remission” would be a patient diagnosed with bone cancer, who refused treatment and who is disease-free more than 10 years later (so we’re not talking about the placebo effect).

Spontaneous remission of cancer has been reported in almost every type of cancer. The largest number of cases are reported in a few types of cancer: neuroblastoma, renal cell carcinoma, melanoma, and leukemias/lymphomas comprise the largest number of cases reported.

Psychological and spiritual factors play a role in remission and survival is evident from the stories of people who have experienced unexplained recoveries from cancer and other diseases, but since the role of mind and the spirit is different for each person, it is difficult to generalize their influence.”


Even though there is “no cure” for cancer, thousands of people over the years have beat the disease.

And there is no set way to this “cure.” There’s no pattern. They all had to do it in a way that WORKED FOR THEM.

Through a combination of a focused determination, perseverance, courage, changes in diet, beliefs & attitudes, physical exercise, meditation, prayer etc. they beat an unbeatable disease.

They overcame their cancer by creating a cure through trial and error, based on their own life experience, using the successes of others as a “guideline.”
feeling-hormonal-yl-de“THERE IS NO CURE FOR RESTLESS LEGS SYNDROME!!!!!!

Yes, I’ve heard it a million times.

For several years now I’ve posted on RLS community boards information that I believe would be helpful to those that are suffering.

The most common reaction I get is that there is “NO CURE FOR RLS!” (followed by YOU QUACK, YOU FRAUD, YOU DISGUSTING EVIL PERSON etc.).

In fact the reaction is so strong I’ve been banned for good from And on top of that, no current member is even allowed to reference me or my website.

I was banned from both and but was allowed back to both. I know I’m currently on thin ice on one of them. I’m on thin ice, and I censor myself so intensely it’s embarrassing, just to avoid getting the boot again.

One nutcase that runs a Yahoo RLS group notified the FDA about me.

All because I claim there is a cure.

I guess if you can invoke that type of reaction you must be doing something right?

It is criminal that these so called “moderators” screen out the information just because they disagree with it – information that the new or casual observer is unable to read and decide for his or herself whether or not they would like to follow up on it.

I understand that in their minds, the moderators are protecting their flock, but the truth is they have serious control issues  that are condemning their members to “life on meds” – continually brainwashing them with the idea that THERE IS NO CURE.

“Stay on your meds and wait with the rest of us for a cure!”

That’s the message.


Here is the definition of Incurable from


1. not curable; that cannot be cured, remedied, or corrected:
an incurable disease.

2. not susceptible to change.

So, by definition, since I had RLS and no longer have it (and many others as well) that means RLS is actually NOT incurable. It is then by definition, curable.


There are hundreds, probably thousands of people that suffered from RLS, and because of changes in their life, no longer do.

Yet the most common response I get to my claim is not “what did you do to break free, for God’s sake, please tell me!”

The most common response is “you didn’t really have it” or even better “you’re just making this all up!”

It sounds like a really bad parent, doesn’t it?

Of course the claim of these hardliners (and there are many of them) is that their RLS is REALLY REALLY REALLY BAD … something the average sufferer couldn’t even imagine, or endure. 

It’s only the people with mild or pretend RLS that get better.

It’s the heroic ones that still suffer with the “TRUE” RLS.


When I post something that hints that there is a cure for RLS, people start freaking at me, interpreting my post as an attack on their character.

They feel that I’m telling them that because they are on meds, they are weak.

Nothing could be further from the truth.

The reason I post the information is so that people who are trapped in a living Hell can “consider” alternatives. I’m only trying to let them know that there are options.

If you escaped from something that was inescapable, would you not try to help others who are still trapped?

It’s human nature.

The whole foundation of self-help groups is based upon this principle.

Drawing up a retirement savings planYOU CAN STAY ON MEDS AND DEVELOP A PLAN OF ACTION

My wife Barb developed a three year multi-stage plan to quit smoking. I had to respect that. That’s what SHE needed to do in order to quit. She developed a plan of action based on HER life experience and HER character and set it in motion.

And it worked. At the end of the process she stopped smoking. She hasn’t had a cigarette in eight years.

However, if she was to push her method on a friend who still smoked, it would be violently rejected.

Her friend has to develop her OWN plan of action.

Her friend, when she decides to quit, can reference what has worked for other people, but for her to succeed, it has to be done HER way, on HER terms.

The cure for RLS is no different.

“I TRIED EVERYTHING AND IT DIDN’T WORK!!!”e4ffe02a476b07a65d62713b69810dac

The most common excuse is “There is no cure because I tried everything and it didn’t work!”


I know from several people that I’ve talked to that they have dramatically changed their diet. Yet, they still suffer.

It doesn’t mean that there isn’t a solution for them. All it means is that they haven’t found it yet.

Every “cure” is going to be a bit different for each person. Just like with spontaneous remission and my wife’s smoking.

But, there IS a cure that exists for every one of you reading this.

It all comes down to how much effort are you willing to put into finding it? And are you willing to change your actions, beliefs and attitudes?


Who is this mystery person that originally informed the world that there is no cure for Restless Legs Syndrome?

Maybe it’s Dr. Mark Buchfuhrer, the legendary RLS specialist “Dr. B” that used to be in a Mirapex commercial?

It can’t be any of the doctors that I’ve quoted from articles and studies. They’re all quacks.

Regardless of who the source is, I’ve never been shown one solid piece of evidence showing that RLS is not curable. In fact it’s quite the opposite.

It’s always just a knee-jerk reaction, with no evidence to support the “incurable” claim.

It’s kind of like atheists continually asking people to prove there is a God. Yet, they’ve never offered one grain of evidence proving there isn’t.


The truth is more and more people are taking the situation into their own hands and are making the necessary changes to become free of there RLS.

You can read about several of them here:

tag-SpontaneousRemissionsIN CLOSING

Let’s face it, what people really mean when they say there is no cure for RLS, is that there is no DRUG that will take it away.

All the successes that happen to the flaky people are anecdotal. There’s no substance to any of it.

For those of you suffering from RLS, I wish you the very best.

I sincerely hope that you can draw some inspiration from the Spontaneous Remission Project.

You can read it online here:


Leave a Comment

RESTLESS LEGS SUCCESS STORY: Nadine Ausen, Waukesha, Wisconsin

nadinea“I was diagnosed with RLS about sixteen years ago. My symptoms were primarily showing themselves in the evening, making it difficult to sit and watch TV, go to a concert, etc, let alone go to bed and sleep.

I had tried lots of drugstore sleep remedies with little relief before being diagnosed.

After the diagnosis, I started on Requip, which really gave me a lot of symptom relief. Problem was, I was almost unable to stay awake during the evening, long before wanting to go to bed for the night. Also, while the legs were quieted, I found myself still restless and irritable, so after awhile, I was switched to Mirapex. Things were somewhat better for awhile, until augmentation began.

Symptoms began earlier in the day, and required more drug to suppress them, so that I would zonk out when the symptoms let up. I read enough information to realize that this class of drugs would probably have to be abandoned soon, leaving others that would be very sedating, as well. Kind of a depressing outlook, since I don’t really aspire to die in the next few years.

On day my daughter sent me a website that talked about natural remedies for RLS (this was after yet another conversation with me about how bummed I was about this miserable ailment and wondering what shape I’d be in in the coming years).

As a very experienced RN, and a natural skeptic besides, my first thought was “Oh, RiGHT!”, and after reading a little on the site, I thought, “How can I do all that?” Yet, as a nurse, it did make some sense to me. I already knew about the evidence showing that inflammation plays a role in a lot of medical conditions, so was it really so far-fetched to see it as a factor in RLS? Then there was the question my husband posed…”Wouldn’t you do almost anything to get rid of that?”

I started with cayenne (which I stopped because of frequent stomach upset) and Curcamin which is a combo drug available at some natural or organic stores as well as via Amazon. I am sorry to say that I don’t know for certain what the third one was that I took, but I can tell you that magnesium, calcium, B-12 sublingual, B complex and Quercitin with Bromelain (also found at natural stores or Amazon) were added soon, and help me a lot.

I also drink carrot juice. Of course, everyone has their own scenario of symptoms. There is also a large list of supplements in which to choose, but I have stuck with these.

I also occasionally use L-theanine to help settle me when I am especially bothered. It’s very mild, just calming.

After only a few weeks, I was able to decrease my Mirapex by half.

The dietary changes are harder, but when I follow them, my evenings are better.
Since they are mostly principles I should follow for glucose and weight control as well, I am working on better compliance, and truly believe I may be able to be prescription – free in time. And even if I don’t get that far, I am in a much better situation and feel much less helpless because of the anti-inflammatory approach.

It is a great feeling to believe you can be proactive in dealing with this illness!! I have passed along some of this to others, and highly recommend trying this method to anyone living with this nasty condition….”Wouldn’t you do almost anything to get rid of that?”

About me: I am 66yrs. old, lived all my life in Wisconsin. Have been married for 44 yrs, and worked for 43 yrs as an RN, most of it in hospital nursing, with many years in cardiology and cardiac surgery. We have an adult son and daughter, a grandson who is 5 yrs, old, and will be excited to welcome a granddaughter in October. We also love our pets, traveling, and music. We enjoy a wonderful Christian church. We are becoming more health-conscious as we get older, and really hope to be active “senior citizens”! having my RLS under control will be important for that.


For more RLS success stories visit
If you have a success story, please e-mail me at

Leave a Comment

SEVEN Common Myths About Restless Legs Syndrome

seven-common-myths-about-restless-legs-syndromeMYTH #1: RLS IS GENETIC

TRUTH: The “tendencies” that cause RLS are passed down from parent to child. These tendencies are VERY changeable. They are not hard-coded.

Epigenetics are the switches that turn these tendencies OFF or ON.

Science now knows with absolute certainty that genetics play a much smaller role than previously thought.

Here’s a quote from Newsweek Magazine about the new exciting world of epigenetics.

“Roll over, Mendel. Watson and Crick. They are so your old man’s version of DNA. And that big multibillion-dollar hullabaloo called the Human Genome Project? To some scientists, it’s beginning to look like an expensive genetic floor pad for a much more intricate – and dynamic – tapestry of life that lies on top of it.” – Newsweek Magazine, June 2009

Genetics determine certain traits that are passed on to children, such as hair color, the shape of the nose etc. (as we all learned in school) but beliefs, tendencies and conditions that are passed on are passed through what is called “epigenetics.” These are the switches that determine how our genes are going to act.

For instance, if a parent was extremely negative, those negative switches would be already turned on in the child’s genetic makeup, even before it was born. The child would have to take an action to change the switches to turn the positive genes on and the negative genes off.

In the case of RLS, the bad switches could be on because of diet, environment, and in a lot of cases, stress. This would create inflammation in the parent, and at some point in the child’s life, sometimes very early. These switches would cause inflammation to build until actions were taken and changes were made.

Here’s a quote from a 2012 study:

“Phenocopies in families with essential tremor and restless legs syndrome challenge Mendelian laws. Epigenetics might provide answers.” Zimprich A. Parkinsonism Relat Disord. 2012 Jul;18(6):711-6.

“There is increasing evidence that epigenetic modifications, which refer to changes in gene expression without changes in DNA sequence, can be transmitted to the next generation. Moreover, epigenetic information can be transferred from one allele of a gene to the other allele of the same gene; if then inherited to the next generation, the offspring consequently presents phenotypic properties related to the untransmitted allele.”

Note that if a parent had inflammatory tendencies in the way they lived their life, the inflammation could eventually manifest in the child in a number of ways. It could become RLS as well as hundreds of other inflammatory conditions including depression, ADHD, Parkinson’s etc.

For an extensive look at epigenetics visit:

hypnosis-hypnotherapy-fibromyalgia-ibs-cfs-441x269MYTH #2: THERE ARE “TWO” TYPES OF RLS –  PRIMARY AND SECONDARY  

TRUTH: There is only ONE type of RLS. RLS is ALWAYS caused by inflammation, not by another condition.

Having chronic inflammation in your body is like spilling a coffee on your keyboard. Something unpleasant is going to happen, you’re just not sure what.

In the now famous 2012 study by Dr. Leonard Weinstock titled “Restless Legs Syndrome: Theoretical Roles of Inflammatory and Immune Mechanisms” it was shown that 36 of the 41 RLS-associated conditions (88%) have been associated with inflammatory and/or immune changes.

According to the study “The fact that the majority of highly RLS associated conditions are also associated with inflammatory/immune changes suggests the possibility that RLS may be mediated or affected through these mechanisms.”

Parkinson’s, IBS, SIBO, Cancer or any of the other secondary conditions the study refers to do not cause RLS. Inflammation is causing BOTH of the conditions.

Keep in mind that inflammation can manifest as one condition, two conditions or more if it’s not addressed.

You can read about the study at the website below, which also includes some additional data that shows why the results should have shown that 100% of the conditions are associated with inflammation.


TRUTH: The inflammation causing the RLS also affects iron levels.

The medical text “Hyperkinetic Movement Disorders: Differential Diagnosis and Treatment” by Alberto Albanese and Joseph Jankovic (John Wiley & Sons, 2012) is a scholarly work written for pediatric and adult endocrinologists, orthopaedic surgeons, roentgenologists, workers in rheumatology clinics, geneticists, nutritionists and very specialized osteologists. The book is a collection of data and observations made through a variety of scientific studies.

Chapter 20 of the book focuses on Restless Legs Syndrome. On page 311, Arthur S. Walters M.D. of the Vanderbilt Department of Neurology is quoted.

“Most recently we have noted that RLS patients have an increased prevalence of Irritable Bowel Syndrome (IBS) and an increased prevalence of Small Intestinal Bacterial Overgrowth (SIBO) compared to controls. This led us to review the 40 or so secondary causes of RLS. Independent of RLS, the vast majority of these secondary causes are associated with either iron deficiency, SIBO or inflammatory/immune abnormalities.

This suggests that inflammation and immune attacks on the peripheral or central nervous system in RLS could be pathogenetic to RLS.

An alternative explanation is that inflammation may lead to iron deficiency which may in turn lead to RLS.”

It is well known in the scientific community that inflammation can affect iron levels. Below are a couple of studies that support this idea:

“Influence of acute inflammation on iron and nutritional status indexes in older inpatients.” MM Chiari et al. J Am Geriatr Soc. 1995 Jul;43(7):767-71.

“Patients with acute inflammation present altered iron status indexes that resemble those observed in the anemia of chronic disease.”

“Interpretation of biochemical tests for iron deficiency: diagnostic difficulties related to limitations of individual tests.” Frank Firkin, Director of Clinical Haematology; and Bryan Rush, Director of Laboratory Haematology, St Vincent’s Hospital, Melbourne.

“Most cases of iron deficiency can be diagnosed with simple tests. The concentration of serum iron does not fall until the body’s iron stores are exhausted. As the stores are depleted, the concentration of transferrin rises while the concentration of ferritin falls.

Caution is required when assessing patients with inflammatory disease as a low serum iron may not represent iron deficiency. These patients often have reduced concentrations of transferrin.”


TRUTH: The dopamine imbalance and the Restless Legs are BOTH caused by INFLAMMATION.

A dopamine imbalance can be caused by low iron levels or directly from inflammation as is stated in the following studies:

“CSF iron, ferritin and transferrin levels in restless legs syndrome.” Soichi Mizuno et al. Department of Psychiatry, Shimane University School of Medicine, Shimane, Japan, February 2004.

“The results of this MRI study suggest that idiopathic RLS patients may have a dysfunction of dopamine production induced by the iron deficiency in a dopamine-related specific area of the brain, and support the iron-dopamine model of this syndrome.

“Iron deficiency alters expression of dopamine-related genes in the ventral midbrain in mice” L.C. Jellena et al. Neuroscience, Volume 252, 12 November 2013, Pages 13–23

“A clear link exists between iron deficiency (ID) and nigrostriatal dopamine malfunction. This link appears to play an important role in at least restless legs syndrome (RLS) if not several other neurological diseases.”  

“Iron deficiency alters dopamine uptake and response to L-DOPA injection in Sprague–Dawley rats.” Laura E. Bianco1 et al. Journal of Neurochemistry, Volume 106, Issue 1, pages 205–215, July 2008.

“Iron deficiency (ID) disrupts brain dopamine (DA) and norepinephrine (NE) metabolism including functioning of monoamine transporters and receptors.”

“Inflammation induces mitochondrial dysfunction and dopaminergic neurodegeneration in the nigrostriatal system.” RL Hunter et al. Journal of Neurochemistry. 2007 Mar;100(5):1375-86.  

“Evidence suggests that chronic inflammation, mitochondrial dysfunction, and oxidative stress play significant and perhaps synergistic roles in Parkinson’s disease (PD), where the primary pathology is significant loss of the dopaminergic neurons in the substantia nigra.”

“Systemic Infusion of Naloxone Reduces Degeneration of Rat Substantia Nigral Dopaminergic Neurons Induced by Intranigral Injection of Lipopolysaccharide.” Bin Liu et al. The Journal of Pharmcology and Experimental Therapeutics Vol. 295, No. 1, JPET 295:125-132, (2000).

“A massive degeneration of dopamine-containing neurons in the substantia nigra (SN) in the midbrain is characteristic of Parkinson’s disease. Inflammation in the brain has long been speculated to play a role in the pathogenesis of this neurological disorder.”

Timeline Cover for RLS Awareness Week 2013 v1MYTH #5: RESTLESS LEGS SYNDROME IS A DISEASE

TRUTH: RLS is a BIOMARKER indicating that your body is dangerously INFLAMED and that ACTIONS must be taken to prevent further damage.

RLS is now officially Willis-Ekbom Disease (WED). The name change occurred a few years ago to give it more credibility, but the truth is it’s an uninspiring name and is rarely used by anyone outside of  

The body is an incredibly complex machine and one of its survival mechanisms is its ability to send our warning signals when something is not right underneath the hood.

For example, frequent headaches indicate that something beneath the surface needs to be attended to, whether it be stress, lifestyle, a tumor, inflammation or something else.

In the case of RLS, your body is telling you that you have too much inflammation and that it must be dealt with. If no changes are made, the inflammation will increase and lead to additional conditions.

A nationally-recognized sleep expert has published an editorial describing Restless Legs Syndrome (RLS) as a possible biomarker for underlying disease. The editorial appears in the March 5, 2014 issue of Neurology the medical journal of the American Academy of Neurology and was authored by Boston Medical Center neurologist Sanford H. Auerbach, MD.

Auerbach suggests that restless leg syndrome is a meaningful biomarker for serious disease, and that RLS screening may become more common as a tool for primary care providers to identify patients at risk.

Find out more here:

MYTH #6: RLS IS OFTEN CAUSED BY PREGNANCYpregnant-woman-doctor-24049835

TRUTH: The RLS is caused by the HIGHER presence of INFLAMMATION in pregnant women.

As the studies below demonstrate, inflammation levels tend to increase in pregnant women.

“Vaginal cytokines in normal pregnancy.” G. Gilbert et al. American Journal of Obstetrics and Gynecology, vol. 189, no. 5, pp. 1433–1438, 2003.

“A significant increase of proinflammatory cytokines (IL-6 and IL-8) is produced in the third trimester. These cytokines act as chemoattractants of polymorphonuclear leukocytes stimulating the expression of prostaglandins in response to delivery preparation.”

“C Reactive Protein levels are elevated in the Third Trimester in Preeclamptic pregnant Women.” Zaima Ali et al. Dept. of Physiology, Lahore Medical and Dental College, Department of Obstetrics and Gynecology, Jinnah Hospital, Lahore.

“Pregnancy is a complex process which leads to a number of systemic changes. During normal pregnancy all these changes are very well regulated. Preeclampsia is a very common disorder of pregnancy and is characterized by hypertension and proteinuria that begins at more than 20 weeks of gestation. Poor placentation with inadequate cytotrophoblast invasion results in widespread maternal endothelial dysfunction. There is increasing evidence that preeclampsia is accompanied by exaggerated maternal systemic inflammatory response to this poor placentation.”

“Prokineticin-1: A Novel Mediator of the Inflammatory Response in Third-Trimester Human Placenta.“ Fiona C. Denison et al. Endocrinology. 2008 July; 149(7): 3470–3477. doi:  10.1210/en.2007-1695

“Prokineticin-1 (PK1) is a recently described protein with a wide range of functions, including tissue-specific angiogenesis, modulation of inflammatory responses, and regulation of hemopoiesis. The aim of this study was to investigate the localization and expression of PK1 and PK receptor-1 (PKR1), their signaling pathways, and the effect of PK1 on expression of the inflammatory mediators cyclooxygenase (COX)-2 and IL-8 in third-trimester placenta.

Our study demonstrates that PK1 and PKR1 are highly expressed in third-trimester placenta with PK1 up-regulating expression of IL-8 and COX-2 potentially via activation of PKR1 and cross-talk with EGFR. The latter finding is supported by double-immunofluorescent immunohistochemistry studies that show that PKR1 colocalizes with IL-8 and COX-2 in placenta. Together, these data suggest that PK1 may be a novel paracrine mediator of the inflammatory response in third-trimester placenta.”

Senior Hispanic woman rubbing handMYTH #7: AGING TENDS TO CAUSE RLS

TRUTH: The RLS is caused by the HIGHER presence of INFLAMMATION in elderly people.

As the studies below demonstrate, inflammation levels tend to be higher in the elderly population.

“Inflammation in aging: cause, effect, or both?” NS Jenny. Discov Med. 2012 Jun;13(73):451-60.

“Aging is a progressive degenerative process tightly integrated with inflammation.”

“Chronic Low-Grade Inflammation in Elderly Persons Is Associated with Altered Tryptophan and Tyrosine Metabolism: Role in Neuropsychiatric Symptoms.” L. Capuron et al. Biol Psychiatry. 2011 Jan 28.

“Our findings show that chronic low-grade inflammation in aging is associated with alterations in enzymatic pathways involved in monoamine metabolism and suggest that these alterations might participate in the pathophysiology of neuropsychiatric symptoms in elderly persons.”

“Age-related alterations in retinal neurovascular and inflammatory transcripts.” CA Van Kirk et al. Mol Vis. 2011;17:1261-74.

“The commonalities in retinal age-related and diabetes-induced molecular alterations provide support for the hypothesis that diabetes and aging engage some common para-inflammatory processes.”

Leave a Comment

« Newer Posts