Archive for the ‘Activism’ Category

FREE Online IBS & SIBO Summit – Sept. 3-10, 2018

https://ibsandsibosossummit.com/?  (Register here and watch short video)

The IBS & SIBO SOS™ Summit is online and FREE from September 3-10, 2018!

Left untreated, these pervasive digestion issues can have devastating effects on your quality of life — but there ARE solutions and our world-renowned experts are here to share them! Anyone who suffers from IBS, SIBO, leaky gut or related digestive disorders will benefit greatly from their cutting-edge research and education — information that’s available here first!

Join us at The IBS & SIBO SOS™ Summit to learn more about:

  • Identifying the root cause of your digestive struggles
  • Saving money from wasted doctor visits and ineffective treatments
  • Identifying which foods cause your flares
  • Naturopathic and conventional principles important to gut healing
  • Strategies for food reintroduction
  • Treatments, protocols and diets for IBS and/or SIBO
  • And more!

The IBS & SIBO SOS™ Summit is hosted by health advocate and popular TV personality Shivan Sarna. Shivan asks the questions YOU would ask if you were in the room with these experts. She draws on her own experience with painful digestive issues and years of failed treatments (alternative and conventional) to be YOUR champion for improved health &mdashl and she’s here to share her knowledge with you!

Meet Your Host

Shivan Sarna

Shivan Sarna

Shivan Sarna has played many roles in her life: daughter, wife, friend, yoga instructor, successful TV host. Now, she’s a passionate SIBO / IBS health educator and advocate. In 2015, Shivan was diagnosed with SIBO (Small Intestine Bacterial Overgrowth) after a lifetime of struggling with digestive issues. She decided to turn her past pain and victory over SIBO into a tangible way to help others suffering with similar health challenges. Shivan made her vision a reality when SIBO SOS™ was born — a movement for awareness, advocacy and patient empowerment.

Category:

Activism, Gut Health, Inflammation, Treatment

Recognition of Lyme Borreliosis in 11th International Classification of Diseases

https://www.linkedin.com/pulse/press-release-ground-breaking-recognition-lyme-11th-luche-thayer/

PRESS RELEASE: Ground Breaking Recognition of Lyme Borreliosis in 11th International Classification of Diseases

Published on August 1, 2018
Jenna Luche-Thayer
consulting Senior Advisor – US Government, United Nations, non-profits, corporate social responsibility programs

On June 18, 2018 the World Health Organization (WHO) issued the 11th revision of the International Classification of Diseases or ICD11. WHO received over 10,000 proposals for ICD11 revisions. The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes executed a comprehensive approach that successfully established new codes for life-threatening complications from Lyme. This is a major achievement for the global Lyme community because it is the first time in over 25 years that these serious complications have been officially recognized by the WHO.

The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes (or Ad Hoc Committee) is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes.

What is the ICD?

The ICD is ‘a common global language’ for health professionals. ICD10 was based on approximately 14,400 codes whereas ICD11 represents more than 55,000 codes for disease diagnoses and identifying injuries and causes of death. The ICD are also used to identify health trends, progress and threats and statistics worldwide.

ICD is used by national health systems and program managers, data specialists, policy makers and others who allocate health resources and track national and global health. Thirty-one countries undertook ICD11 field testing and all Member States are to adopt ICD11 for disease reporting and morbidity and mortality statistics in 2022.

From ICD10 to ICD11

According to the Ad Hoc Committee’s Report, UPDATING ICD11 Borreliosis Diagnostic Codes, Edition One: March 29, 2017, WHO has recognized Lyme borreliosis to be a ‘disease of consequence’ since the 1990s, but the codes have remained basically unchanged. [1] This Report notes there are few recognized Lyme complications in the ICD10 codes and these include a rash, meningitis, polyneuropathy and arthritis due to Lyme borreliosis.

For many persons living with Lyme infection, the absence of codes for their Lyme complications means their need for care is not recognized or covered by their national health system or insurer.

The Ad Hoc Committee demonstrated how the ICD10 Lyme codes —by excluding many complications from the infection— contributed to multiple human rights violations. The Ad Hoc Committee entered comprehensive documentation and recommendations into the WHO ICD11 Beta Platform to promote recognition of:

Congenital Lyme disease, persistent infection, borrelial lymphocytoma, granuloma annulare, morphea, localized scleroderma, lichen sclerosis and atrophicus, Lyme meningitis, Lyme nephritis, Lyme hepatitis, Lyme myositis, Lyme aortic aneurysm, coronary artery aneurysm, late Lyme endocarditis, Lyme carditis, late Lyme neuritis or neuropathy, meningo-vascular borreliosis and neuroborreliosis —with cerebral infarcts, intracranial aneurysm, Lyme Parkinsonism, late Lyme meningoencephalitis or meningo-myeloencephalitis, atrophic form of Lyme meningoencephalitis with dementia and subacute presenile dementia, neuro-psychiatric manifestations, late Lyme disease of liver and other viscera, late Lyme disease of kidney and ureter, late Lyme disease of bronchus and lung and seronegative and latent Lyme disease, unspecified.

On June 5th, 2017 in Geneva, Switzerland, members of the Ad Hoc Committee met with Dainius Pūras, the United Nations (UN) Special Rapporteur on the right to health to discuss their findings and recommendations. For example, the Lyme codes are largely based on science that is rife with conflicts of interests and is globally promoted by the Infectious Diseases Society of America (IDSA). The codes also ignore many of the serious, potentially fatal complications from the disease.

After the 2017 Report UPDATING ICD11 Borreliosis Diagnostic Codes was entered into UN record, the Ad Hoc Committee met with Dr. Shekhar Saxena, the senior WHO official responsible for addressing dementia. According to the Ad Hoc Committee Director Jenna Luché-Thayer, a former Senior Advisor to the UN and US Government,

“Lyme borreliosis is a political disease and so producing a Report is only the first step in a very political process.

Every day, financial incentives and profit motives contribute to persons being denied existing diagnostic technologies that meet required standards such as those set by the European Union and by UN Member States. Persons are being denied treatment options that have met internationally validated standards and becoming disabled and dying because access to cheap generic antimicrobials are being obstructed in favor of palliative care or expensive patented biologics that manage symptoms and leave systemic infection untreated.

Following the UN meetings, we undertook media campaigns that informed the public, government and UN officials on the shortfalls of the Lyme borreliosis ICD10 codes and their related human rights violations.

We then submitted our 2018 Report, The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One to Special Rapporteurs. [2] This Report also emphasizes the need to update the ICD codes and documents how the conflicts of interest driving the science contributes to human rights violations across eleven different international and regional human rights treatises. This Report was reviewed by Michel Forst, Special Rapporteur for the situation of human rights defenders and the Special Rapporteur on the right to health and entered into UN record in 2018.”

The Ad Hoc Committee’s efforts are based on global cooperation and coordination. For example, Australia, Belgium, Canada, Denmark, France, the Netherlands, Nigeria, Sweden, Switzerland, Turkey, the United Kingdom and USA were represented by Ad Hoc members in Geneva. Participants included medical doctors and scientists Barbaros Cetin, Michael Cook, Anne Fierlafijn, Mualla McManus, Clement Meseko, Judith Miklossy, Christian Perrone, Kenneth Liegner, Kenneth Sandström and Ursula Talib; advocates Theresa Denham, Angelica Johannson, Jennifer Kravis, Torben Thomsen and Jim Wilson; and human rights experts Jenna Luché-Thayer and Astrid Stuckelberger.

The ICD codes for Lyme borreliosis have been basically unchanged since the early 1990s. After twenty-five years of outdated codes, the Ad Hoc Committees’ efforts contributed to groundbreaking recognition of certain life-threatening complications from Lyme borreliosis. The new ICD11 codes now include congenital Lyme borreliosis, and dementia and central nervous system demyelination due to Lyme borreliosis.

ICD11 codes also recognize: Disseminated Lyme borreliosis, Lyme Neuroborreliosis, Lyme Carditis, Ophthalmic Lyme borreliosis, Lyme arthritis, Late cutaneous Lyme borreliosis, Other specified disseminated Lyme borreliosis, Disseminated Lyme borreliosis, unspecified, Infectious panuveitis in Lyme disease and Infectious intermediate uveitis in Lyme disease.

According to Luché-Thayer,

“The Ad Hoc Committee efforts to update the ICD11 codes were serendipitous because, unfortunately, many persons in the UN system have friends and family devastated by Lyme. However, the benefits from the new codes will only be realized when patients, advocates, medical and scientific professionals, and politicians are informed.

No parent should have to live with the sorrow and challenge of a child damaged by congenital Lyme when expectant mothers could so easily be screened for this infection. The inclusion of empiric therapies for Lyme infection among the empiric therapies for dementia, multiple sclerosis and Parkinson’s disease could save millions or even billions of dollars.

There must be concerted and organized political demands that these potentially fatal complications be prevented, and their underlying infections be diagnosed and treated. The recognition by the World Health Organization of these life-threatening complications from Lyme infection cannot be dismissed. The integration of this knowledge into health policies across the globe should begin today.”

——————————————————————————————-

[1] Updating ICD11 Borreliosis Diagnostic Codes: Edition One, March 29, 2017. Authors: Jenna Luché-Thayer, Holly Ahern, Dominick DellaSala, Sherrill Franklin, Leona Gilbert, Richard Horowitz, Kenneth Liegner, Mualla McManus, Clement Meseko, Judith Miklossy, Natasha Rudenko, Astrid Stuckelberger. Contributing researchers: Joseph Beaton, John Blakely, Phyllis Freeman, Kunal Garg, Huib Kraaijeveld, Vett Lloyd, Leena Meriläinen. Cees Hamelink, Advisor. Jeff Levy, editorial support. Angelica Johannson, organizational support. ISBN-10: 1978091796, ISBN-13: 978-1978091795. CreateSpace Independent Publishing Platform October 7, 2017. To contact the principal author, email jennaluche@gmail.com

Also available on Amazon

[2] The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One, March 6, 2018. Authors: Jenna Luché-Thayer, Holly Ahern, Robert Bransfield, Joseph Burrascano, Anne Fierlafijn, Theresa Denham, Huib Kraaijeveld, Jennifer Kravis, Mualla McManus, Clement Meseko, Jack Lambert, Sin Hang Lee, Kenneth Liegner, Christian Perronne, Kenneth Sandström, Ursula Talib, Torben Thomsen, Jim Wilson. Expert Reviewers: Gabriela Barrios, Barbaros Cetin, Joseph Jemsek, Jose Lapenta, Natasha Rudenko, Armin Schwarzbach. Advisors: Cees Hamelink, Astrid Stuckelberger. ISBN-10: 1722988061, ISBN-13: 978-1722988067. CreateSpace Independent Publishing Platform July 12, 2018. To contact the principal author, email jennaluche@gmail.com

_________________

**Comment**

Fantastic news.  Let’s work on the plethora of coinfections next!

 

 

 

 

 

 

 

 

 

Category:

Activism, Lyme

Cyclosporiasis Update For Wisconsin

https://www.cdc.gov/parasites/cyclosporiasis/outbreaks/2018/a-062018/index.html

Multistate Outbreak of Cyclosporiasis Linked to Del Monte Fresh Produce Vegetable Trays

CDC and federal, state, and local public health partners are investigating an increase in reported cases of Cyclospora infection.

https://www.cdc.gov/parasites/cyclosporiasis/  Cyclosporiasis is an intestinal illness caused by the microscopic parasite Cyclospora cayetanensis.  People can become infected with Cyclospora by consuming food or water contaminated with the parasite.

https://www.cdc.gov/parasites/cyclosporiasis/disease.html  Symptoms of cyclosporiasis begin an average of 7 days (range, 2 days to ≥2 weeks) after ingestion of sporulated oocysts (the infective form of the parasite).

Symptoms of cyclosporiasis may include the following:

  • Watery diarrhea (most common)
  • Loss of appetite
  • Weight loss
  • Cramping
  • Bloating
  • Increased gas
  • Nausea
  • Fatigue
  • Other symptoms that may occur but are less common include the following:
  • VomitingLow-grade fever

LAST UPDATED JULY 19, 2018 7:30 PM EDT

On June 15, 2018, Del Monte Fresh Produce recalled 6 oz., 12 oz., and 28 oz. vegetable trays containing fresh broccoli, cauliflower, celery sticks, carrots, and dill dip. Recalled products were sold in clear, plastic clamshell containers.

Recalled products were distributed to the following stores: Kwik Trip, Kwik Star, Demond’s, Sentry, Potash, Meehan’s, Country Market, FoodMax Supermarket, and Peapod.

Recalled products have a “Best If Enjoyed By” date of June 17, 2018.
The recalled 6 oz. Del Monte Fresh Produce vegetable tray has a UPC code of 7 1752472715 2 found on the package label.

  • The recalled 12 oz. Del Monte Fresh Produce vegetable tray has a UPC code of 7 1752472518 9 found on the package label.
  • The recalled 28 oz. Del Monte Fresh Produce small vegetable tray has a UPC code of 7 1752478604 3 found on the package label.

Do not eat or sell recalled vegetable trays. Throw them away.
CDC, public health and regulatory officials in several states, and the U.S. Food and Drug Administration are investigating a multistate outbreak of Cyclospora infections.

As of July 19, 2018 (1pm EDT), CDC has been notified of 237 laboratory-confirmed cases of cyclosporiasis in persons who reportedly consumed pre-packaged Del Monte Fresh Produce vegetable trays containing broccoli, cauliflower, carrots, and dill dip. The reports have come from four states.

Seven (7) of these people have been hospitalized, and no deaths have been reported.

Epidemiologic evidence indicates that pre-packaged Del Monte Fresh Produce vegetable trays containing broccoli, cauliflower, carrots, and dill dip are the likely source of these infections.

The investigation is ongoing. CDC will provide updates when more information is available.

 

Category:

Activism, Uncategorized

The 3 PANS Myths That Are Ruining Lives

https://thedreamingpanda.com/2018/07/11/3-myths-about-pans-ruining-lives-causing-controversy/  From The Dreaming Panda, pen name, Iris Ainsley

These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine

PUBLISHED ON July 11, 2018, reprinted with permission

In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease. However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms. It was then that I realized the truth wasn’t always easy to accept:

I DIDN’T HAVE A MENTAL ILLNESS—I HAD A POORLY UNDERSTOOD CONDITION CALLED PANS.

Because it’s a physical illness that attacks the brain, even though it can look identical to mental diagnoses like OCD, Tourette’s, anorexia, and even psychotic disorders, therapy and psychotropic medication aren’t enough—at best, they’re a bandaid. Yet most doctors don’t understand this, and people can spend years getting ineffective and inappropriate psychiatric care when medical treatment could’ve cured them.

Unfortunately, a recent paper published in the Journal of Pediatrics has thrown up a roadblock for the PANS community’s tireless efforts to improve a desperate situation that affects at least 1 in 200 children and teens—plus untold numbers of adults like me who grew up and slipped through the cracks. In a time when we’ve finally gained some ground with doctors treating it at the NIH, Stanford, Yale, Columbia, Georgetown, and more, it felt like a slap in the face.

The paper’s conclusions go against all of the expert-recommended treatments that have saved my life, including IVIG, steroids, and antibiotics (collectively referred to as “immunomodulation” in the publication). It perpetuates myths rather than advancing science, while underscoring the sharp divide between doctors in academia and doctors in the trenches getting people better.

Although I don’t expect to change the authors’ minds with this post, as an anonymous blogger with a mere bachelor’s degree, I feel it’s important to speak up against three particularly egregious points in the paper so that maybe other researchers will take notice and do a better job promulgating scientific inquiry…

PANS IS NOT A MILD ILLNESS.

The most troubling aspect of the article in my opinion is what the authors seem to think defines “PANDAS/PANS.” One of the most revealing quotes says:

“We recommend that clinicians do not perform the PANDAS/PANS medical diagnostic testing in otherwise healthy children with mild to moderate, nondisabling OCD or tics. In our experience, this is the majority of children referred for PANDAS or PANS.”

It’s true that some cases of PANS/PANDAS can be mild, but if the authors think most cases of PANS are mild, then I question if they’ve ever really seen it.

I’ve lived this disease myself for over eleven years, I’ve talked to dozens of families, and I can say that our PANS is not their PANS…

  • PANS is the quiet five-year-old girl who suddenly grows violent towards her fellow kindergarteners, can no longer go to school, starts wetting the bed and using diapers again, and can only wear one dress because all other clothes make her skin feel on-fire.
  • PANS is the grade-school boy who develops an eating disorder out of nowhere, can only eat small amounts of soft foods, loses 15% of his already slender body weight, has constant pain from incessant tics and twitches, and breaks down into tears and tantrums whenever his parents leave his sight.
  • PANS is the bright teenager who can no longer do basic math, whose handwriting is suddenly illegible, who spends four hours getting ready every morning, and who has to sleep with her parents because of nightmares and terrifying nighttime hallucinations.
  • And let’s not forget that PANS is also the adult who has spent most of his life in and out of psych wards and group homes, who has a dozen psychiatric and neurological diagnoses, who has tried every medication imaginable with little success, and who can’t finish school or hold a job.

PANS is debilitating, all-consuming, and, quite frankly, it’s hell on earth. It’s anything but “non-disabling OCD and tics.” And for the many with restrictive eating—one of the main diagnostic criteria for PANS—they are absolutely NOT physically healthy, either.

I’ve met all of the above people, and when no psychiatric interventions were enough, antibiotics, steroids, and IVIG—the very treatments the authors dismiss—brought them back to life.

PANS ISN’T AN EXCUSE TO AVOID PSYCHIATRIC CARE.

I’m also concerned that the authors don’t understand that many of us have already tried every traditional psychiatric treatment under the sun—and we’re still sick…

“The diagnosis of PANDAS or PANS distracts families from pursuing clinically important psychiatric and behavioral interventions and sometimes leads to inappropriate, expensive, and risky treatments.”

Personally, I tried every anti-depressant that exists plus years of therapy. True, some of it helped me to a degree, but nothing was able to save me when I truly lost my mind and fell off a cliff in 2014…

I woke up with wild involuntary movements all over my body. Rage. Panic attacks. Cognitive decline. Hallucinations. Delusions. Suicidal depression. Loss of coordination. Inability to focus. Constantly falling asleep all day long. In short, I completely lost who I was as a person, and doctors said they had nothing else to help me.

Pursuing a PANS diagnosis wasn’t a way to avoid psychological care—it was a last resort and a Hail Mary to save me from intractable symptoms. PANS families would love nothing more than for mainstream psychiatric interventions to be enough, and they’re often the first thing families have tried before moving onto the so-called “expensive and risky” medical treatments.

Why would any loving parent in their right mind subject their child to needles and IV sticks and hospitalizations for procedures like plasmapheresis, IVIG, and Rituxan? Why would your average middle-class family risk their financial security to travel hundreds of miles to go to out-of-network doctors and pay out of pocket for the multi-thousand-dollar aforementioned treatments?

The above quote from the paper seems like a gaslighting of parents who are doing everything they can to get their critically ill children better—parents who have already tried every psychiatric intervention known to humankind.

As it turns out, for me and many others, the only “distractions” are the psychiatric treatments—a few days of steroids helped me more than eight years of psychotropic medication and therapy. I took 50 mg of Prednisone for five days in 2014, and all my symptoms abated. Two IVIG procedures later made the effect more permanent.

COMPLETELY DISMISSING CLINICAL EXPERIENCE IS MISGUIDED.

“There is scant scientific evidence that the treatment of tics, OCD, presumed PANDAS or PANS with antibiotics or immunomodulation is effective… The immunotherapy guidelines are based on ‘the expert opinions and clinical experiences of the members of the PANS Research Consortium.’ Thus, none of these guidelines followed standard practices for unbiased systematic review of the evidence…

We strongly emphasize that it is essential that the treating physician be cognizant of the lack of evidence supporting treatment recommendations when considering whether or not to follow the PANS Research Consortium’s recommendations, especially regarding immunomodulation.”

This, right here, is the fundamental flaw and most appalling offense of the whole paper. The authors completely dismiss the empirical evidence for the treatments that PANS experts successfully use to get their patients better.

In all fairness, when I combed through the article, I found many compelling points about everything we don’t know about PANS. And I think members of the Consortium—the doctors who are effectively treating PANS—would be the first to admit that we’re only in the infancy of understanding the connection between the immune system and psychiatric disorders. No one denies that we desperately need more randomized, placebo-controlled studies to validate the treatments that the Consortium recommends.

However, there are thousands of people suffering today that can’t wait for enough studies to be funded and executed to rewrite the medical textbooks.

People with PANS are hurting right now, and doctors in the Consortium have put their reputations on the line to find treatments that can help. The greatest medical advancements come from clinical experience that is later corroborated through placebo-controlled studies.

If doctors must rely solely on published medical studies and can’t trust clinical experience, then a doctor on their first day in private practice who has read many journals is just as good as a doctor who has practiced for fifty years at a world-class hospital. Clearly, this can’t be the case… Or do the authors simply believe that the only clinical experience that can be trusted is their own?

A good scientist should take an unbiased approach to evaluating how best to treat PANS by stepping back and asking why the Consortium’s immunotherapy treatments have helped people. And if there are studies that contradict the testimonies of dedicated doctors and hundreds of patients, then how are people getting better? What are we doing differently in the studies versus real life? Are there any alternative explanations? Is there something we haven’t yet discovered that could explain it?

Until everyone lets go of their personal biases, science cannot progress. In the meantime, those of us with this tragically misunderstood condition are caught in the crosshairs of controversy, with no choice but to pursue newly discovered treatments when the more established therapies have failed.

If the authors are right that immunomodulation doesn’t work, and all of the improvements in people who have had it could be attributed to psychiatric interventions, then the worst that’s happening now is that families using these treatments are wasting some time and money—but the kids are still coming out the other side with their lives intact.

If, however, the authors are wrong, and PANS is a real disease that can only be cured with antibiotics and/or immune therapies, then there are thousands of people needlessly suffering from a treatable medical problem. The implications of this, with the loss of human potential, the burden on families, and the wasting of already scant mental health resources, is incalculable.

As an adult who evaded diagnosis for eight years, and who knows full well that I might not be alive without immunomodulation and antibiotics, I urge whatever scientists may read this to all work together to help us figure out this devastating disease.

My illness has no regard for medical politics and the status quo of mental healthcare—what people like me need is effective treatments and competent doctors. I challenge any clinician faced with a family seeking help for suspected PANS to listen and think critically before dismissing us. And I admonish all of you to put aside your biases and use your expertise to help those of us looking to people like you to restore our lives.

Follow me:  Facebook – The Dreaming Panda Blog:  https://www.facebook.com/The-Dreaming-Panda-Blog-1941754169186141/
Twitter:  https://twitter.com/dreamingpanda1

https://thedreamingpanda.com/whats-pandas/  A great read on what exactly PANDAS/PANS is.

https://thedreamingpanda.com/my-story/  Iris’s story.

_______________

**Comment**

According to one prominent Wisconsin LLMD, 80% of his PANDAS/PANS patients has Lyme/MSIDS.  It’s not uncommon for patients to suffer with numerous pathogens and require numerous treatment modalities.

For more:  https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/

https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2017/10/09/today-is-panspandas-awareness-day/

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2015/10/06/november-dr-brown-on-msids-pandas-pans/

Category:

Activism, PANS, Psychological Aspects, research, Treatment

Methylation – What You Need to Know

https://vitalplan.com/blog/methylation-what-you-need-to-know?

Methylation: What You Need to Know

by Dr. Bill Rawls | Posted June 9, 2018

Methylation-What-you-need-to-know
If you haven’t yet heard the term methylation, there’s a good chance you’ll soon start hearing it a lot more. Many people are beginning to clue into the importance of this biochemical process, which is a key component of overall wellness, and yet myths and misconceptions are more common than facts. Understanding methylation, and knowing how to optimize it, can give you an edge on staying healthy as you age.
So what is methylation? In biochemical terms, methylation is when a “methyl group” consisting of three hydrogen atoms and one carbon atom are linked to another molecule. Attaching a methyl group to an organic molecule (a chemical compound that contains carbon) makes it less reactive.
In more laymen terms, methylation is a process of making molecules more stable, which is important for a wide range of metabolic functions in the body. For starters, it balances hormone and neurotransmitter activity, and regulates protein synthesis and cellular energy. It processes DNA/RNA, the molecules that are responsible for storing and reading our genetic information, and repairs DNA. And it optimizes the functions of T-cells, white blood cells that play a key role in immune response.
Methylation also helps neutralize toxic substances: When methyl groups attach to organic toxins such as heavy metals, it reduces their toxicity and allows for easier removal from the body. When you consider that the modern world is loaded with higher concentrations of artificial toxins than ever before in history, maintaining optimal methylation is increasingly vital.
One of the most important roles of methylation is regulating the expression of genes. At any given time, you are using only about 1% of your genetic material; the rest of it is in “off” mode. But there are certain factors notorious for turning on “bad” genes that are associated with chronic illness, many of which are unique to the modern world. These include eating a poor diet high in processed food products, exposure to environmental toxicants, dealing with chronic stress, and having a sedentary lifestyle.
This is where methylation comes in — the way the body turns off “bad” genes is by attaching methyl groups to genetic material. Of course, if you don’t change your diet and lifestyle, the bad genes will turn on and/or stay on. Keep stressing your genes, and all the methyl groups in the world aren’t going to help you stay well.

The role of poor methylation in chronic illness

This is a huge misconception: People with symptoms of chronic illness — typical ones being fatigue, neurological symptoms, mood disorders like anxiety, and insomnia, to name a few — are being told that poor methylation is the cause of their illness. But in fact, it’s those same stressors that activate bad genes that increase susceptibility to illness; poor methylation just compounds the problem.

The Western diet is the biggest culprit. The body relies on a steady stream of methyl donors from certain foods to support the metabolic functions that are dependent on methylation. (Methyl donors are any substance that can transfer a methyl group — three hydrogen atoms and one carbon atom — to another substance.) It can use a variety of methyl donors, but the four most important components are methionine (an amino acid) and the B vitamins: methylfolate (B-9), B-12, and B-6.

Unfortunately, modern grain- and meat-based diets are very poor sources of methylfolate and other B vitamins. Food companies often try to compensate for the loss of natural folate by adding folic acid to their products, but it’s not an adequate substitute. What’s more, people who over-consume processed foods tend to develop gastrointestinal problems and lose the ability to produce a substance called intrinsic factor, which is essential for absorption of vitamin B-12.

Genetics also play a role in methylation proficiency. About 50% of the population carries a mutated gene (MTHFR) for an enzyme called 5-MTHF reductase. This gene is necessary to convert homocysteine (an amino acid most abundant in meat) into methionine, an amino acid that’s essential for the methylation process. About 40% of the population carries one MTHFR mutation, and 12% of the population carries a double mutation.

Having MTHFR mutations, however, may be less of a factor in chronic illness than some experts suggest. The evidence linking concerns such as myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, and Parkinson’s disease to the presence of a mutated 5-MTHF reductase gene is mild at best. Scientific investigations have shown only a very slight increased incidence of chronic illnesses in affected individuals.

That’s because this genetic pathway is only one of a variety methylation pathways. The human body would never rely on a single option for a function like methylation which is so essential for life. In addition, for most of history, humans consumed large amounts of plant matter that provided all the components necessary for methylation (methionine, B-9, B-12, and B-6). It’s only in recent history, as our diet has become more plant- and nutrient-deficient, that this particular genetic methylation pathway has become “essential.”

How to know when it’s time to test

People often ask which symptoms indicate they should get tested for poor methylation, but there are no pure telltale signs. My answer is, if you have classic symptoms of chronic illness such as fibromyalgia or ME/CFS, and you eat a lot of processed foods and very few vegetables, it’s pretty safe to assume have poor methylation.

The biggest reason to have the test is to determine whether you have a double mutation, in which case supplementation with natural folates may be valuable. Determining whether you have a MTHFR mutation requires a simple blood test that costs about $150.

Checking for elevations of homocysteine in your blood can tell you the degree of the problem: The higher your homocysteine levels, the lower the formation of methylfolate for making methionine, if methylation mutations are present. More than anything else, elevations of homocysteine indicate over-reliance on grains and meat as a food source.

6 ways to support proper methylation

Maintaining proper levels of methylation is important for health, but it must be part of a more comprehensive strategy. Again, nothing can balance the damage that comes from eating a nutrient-poor diet, living in a toxic environment, allowing stress to get the best of you, and sitting all day. Follow the simple steps below to help ensure optimal methylation, and whether or not you carry a MTHFR mutation will become a non-issue:

1. Eat your veggies.


Focus especially on dark green leafy vegetables such as spinach and kale, as well as asparagus, broccoli, cauliflower, and peas and beans (preferably sprouted). A healthy, plant-based diet containing these foods is the number one way to ensure you take in plenty of methylfolate, one of the primary methyl donors.

2. Get plenty of B vitamins.


Folate is a B vitamin, but vitamins B6 and B12 can be important methyl donors, too. You’ll find them in salmon, eggs, nuts and seeds, plus bananas, avocados, and soy.

3. Look for active forms of B-vitamin methyl donors.


If you take daily vitamin and mineral supplements to support your health, check ingredient lists to be sure they contain bioactive forms of the B vitamin methyl donors, which means they’re in a form your body can actually use. Here’s what they’ll look like on the label:

  • Folate (active forms: 5-Methyltetrahydrofolate or l-Methylfolate) Note that folic acid found in most multivitamin products is not satisfactory. It is not absorbed and utilized in the body properly, especially if you have a MTHFR mutation. This is particularly true if you are pregnant, in which case supplement with methylfolate, instead of folic acid, and consume plenty of leafy greens.
  • B6 (active form: Pyridoxal 5-Phosphate)
  • B12 (active forms: Methylcobalamin or Hydroxocobalamin)

4. Supplement with glutathione, if needed.


Glutathione is an essential antioxidant and another methyl donor, and it’s important for a myriad of processes in the body. Supplementing isn’t as necessary for young, healthy people, but chronic illness and aging put extra pressure on the body, so extra glutathione can be beneficial. Taking SAMe is another way to support the methylation process, but again, it’s unnecessary for young, healthy people, or if you’re getting adequate bioavailable B vitamins.

5. Consider restorative herbs.


Opt for herbs that support your immune system, microbiome and other functions such as andrographis, Japanese knotweed, milk thistle and sarsaparilla. “Any of the restorative herbs will help counteract a wide spectrum of stress factors in the body, and therefore help take pressure off of detoxification and healing systems,” Dr. Rawls says. “Cordyceps and reishi are also good examples, because they support immune system functions.”

6. Stay active, manage stress, and cut back on alcohol.


It’s common sense that living a healthy lifestyle helps keep everything in your body running smoothly. But research has started connecting the dots between lifestyle factors such as sedentary behavior, stress, and toxins such as alcohol with changes in DNA methylation.

Proper methylation impacts so many health systems of the body, and the simple steps outlined above can help support and enhance the process — MTHFR gene mutation or not. Enjoy your favorite produce, take steps to stay active and keep stress in check, and supplement with the right nutrients and herbs, and you’ll be paving a path toward a long, healthy, vibrant life.

References
1. Richardson, B. “DNA methylation and autoimmune disease.” Clinical Immunology 2003 Oct;109(1):72-9
2. de Vega, WC et. al. “DNA Methylation Modifications Associated with Chronic Fatigue Syndrome.” PLoS One 2014; 9(8): e104757.
3. Sokratous, M. et. al. “Deciphering the role of DNA methylation in multiple sclerosis: emerging issues.” Autoimmunity Highlights. December 2016, 7:12
4. Varela-Rey, M. et. al. “Alcohol, DNA methylation, and cancer.” Alcohol Research. 2013;35(1):25-35.
5. Phillips, T. “The Role of Methylation in Gene Expression.” Nature Education 1(1):116
6. Jones, MJ et. al. “DNA methylation and healthy human aging.” Aging Cell. (2015) 14, pp 924-932
7. Jones, Meaghan J. et. al. “DNA methylation and healthy human aging.” Aging Cell (2015) 14, pp 924-932
8. De Vocht, F. et al. “DNA methylation from birth to late adolescence and development of multiple-risk behaviours.” Journal of Affective Disorders. 2018 Feb; 227: 588–594.

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For more:  https://madisonarealymesupportgroup.com/2018/03/23/altered-dna-methylation-mental-illness-lyme-msids/

https://madisonarealymesupportgroup.com/2018/04/09/3-part-series-on-genetic-mutations/

 

 

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