Solving the Mystery of Ehlers-Danlos: Is Folate the Missing Piece?

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Along with providing information on whether Folate supplements might be right for you, this article also links to Fullscript where you can buy high quality supplements. Order online through Fullscript’s secure healthcare formulary to get the best prices and free shipping on professional-grade supplements.

Finally, a hallelujah moment. We may have a breakthrough in our understanding of Ehlers-Danlos Syndrome (hEDS), a baffling condition that has stymied medical professionals for years. In this article, we delve into the game-changing research suggesting folate might just be the missing piece of the puzzle. We also provide convenient links so that you can order methyl folate supplements directly from Fullscript, making the first steps towards possible symptom management as simple as a click. Buckle in as we embark on this revolutionary journey towards understanding and managing hEDS.

“This is real, it’s been vetted out well and clinically we’re noticing a difference,”

Jacques Courseault, MD – Tulane University

The What and Why of Ehlers-Danlos

Did you ever meet a kid in the schoolyard that could twist themselves into weird positions? We called it “being double-jointed”, but this incredible flexibility can come from a condition you might not have heard of before– Hypermobile Ehlers-Danlos Syndrome, or hEDS for short. This is a complex condition that primarily affects the body’s connective tissue – the “glue” that helps hold our bodies together. From unusually flexible joints to delicate skin, people living with hEDS experience a wide range of symptoms that can impact their day-to-day lives.

Hypermobile Ehlers-Danlos Syndrome (hEDS) presents a range of health challenges that can significantly impact an individual’s daily life. Fatigue is a common issue, with sufferers often feeling perpetually drained, impacting their ability to carry out routine tasks. Pain, especially in the joints, is another major symptom, varying from occasional discomfort to constant agony. hEDS patients may also experience Postural Orthostatic Tachycardia Syndrome (POTS), a condition marked by rapid heartbeat and dizziness upon standing up, making even simple movements a challenge. Joint subluxation, where the joints partially dislocate, adds to the host of difficulties, causing discomfort and reducing mobility.

Diagnosing and managing hEDS is not an easy task. Because symptoms include so many different organ systems and such vague complaints, physicians unfamiliar with hEDS often mistake these patients for attention seekers and send them to psychiatrists. Tests are all normal. Unlike other conditions, hEDS doesn’t come with a handy lab test or genetic marker that doctors can use to confirm a diagnosis. This means that many people with hEDS face years of misdiagnoses before they finally get answers. To say this is a challenge would be an understatement. These patients often give up and stop being open with their physicians because of their long histories of not being believed.

The Breakthrough Discovery: Unusual Folate Levels and the MTHFR Connection

On the frontlines of understanding Ehlers-Danlos, a team of dedicated scientists at Tulane University has just published their exciting discovery. After treating numerous hEDS patients at their clinic, they started noticing a peculiar trend: these patients all had unusually high levels of folic acid in their blood.

When they looked deeper, they found that these high folate levels were consistently coupled with mutations in a gene known as MTHFR. In a nutshell, MTHFR is a gene that provides instructions for making an enzyme that helps our bodies process folate, a B vitamin, into its active form.

The connection between high folate levels and mutations in the MTHFR gene in Ehlers-Danlos patients was an eye-opening revelation. The team then connected the fact that animal model studies suggest that 5-methylTHF is necessary to deactivate an enzyme called MMP-2. MMP-2 (matrix metalloproteinases 2) breaks down a molecule named decorin — the “glue” that binds the scaffold that secures cells in place. So, the fragmentation of decorin by MMP-2 causes connective tissue to be loosely bound.

The Proposed Solution: Methylated Folate Supplements

The Tulane researchers’ breakthrough findings point towards an intriguing possibility for managing hEDS symptoms: a supplement containing 5-methyltetrahydrofolate, or 5-methylTHF. This is a form of folate that’s ready for the body to use without the need for the MTHFR enzyme to convert it first. [PMC10122021]

“It’s an innocuous treatment. It’s not dangerous, and it’s a vitamin that can improve people’s lives. That’s the biggest thing: We know what’s going on here, and we can treat it.“

Dr. Bix

You might be wondering, “Why not just eat more foods high in folate?” It’s a reasonable question. The folate that we typically get from our diet needs to be converted by our bodies into 5-Methyltetrahydrofolate 5-MTHF before it can be used. This process is precisely what’s disrupted in hEDS patients due to the MTHFR gene mutation. Therefore, eating more folate-rich food wouldn’t necessarily lead to higher levels of 5-methylTHF. In fact, it could lead to even higher levels of unprocessed folate in the blood, which is exactly the problem. High folic acid levels are what drive an increase in MMP-2.

On the other hand, taking a supplement that contains 5-methylTHF (also known as methylfolate) bypasses the need for this conversion. It’s like giving your body the exact fuel it needs, ready to go. This could potentially help keep the MMP-2 enzyme in check, alleviating the symptoms of hEDS.

Check Your Methylation Status

Since the advent of methylated B vitamins, clinicians have been finding that undermethylation due to a faulty MTHFR gene variant is not the only possibility. It is also possible for a person taking higher doses of methylated B vitamins over a period of time to become “overmethylated”. While the concept of overmethylation is not universally accepted in mainstream medicine, some clinicians and researchers in the field of functional medicine have observed this. Overmethylation can cause various symptoms, including anxiety, insomnia, and irritability.

When discussing lab tests related to methylation, there are both tests for your genetics and tests for your current methylation status. These include tests you can order online without a prescription:

• MTHFR by Cell Science Systems: Specifically tests for MTHFR gene variants.
• 3X4 Genetics Test + Blueprint Report by 3X4 Genetics: includes MTHFR along with an excellent report on the most relevant genetic variations.
• Methylation Profile by Doctor’s Data: Gives insights into a person’s current methylation status, which can guide supplementation.
• Homocysteine by Access Labcorp Draw: This test can indicate methylation status.

When you purchase linked products presented on this page, Supplement Sciences, LLC receives affiliate fees so that our dietitians can continue to create great content.

Thank you for your support!

Choosing the Right Folate Supplement

When considering supplementing with methylfolate, it’s worth exploring the advantages of including it as part of a B-complex supplement or a multivitamin, each offering distinct benefits that cater to varying individual needs and health goals. Where you obtain vitamins also makes a difference.

B-Complex with Methyl Folate

Taking methyl folate as part of a B-complex supplement ensures you receive an optimal balance of all eight essential B vitamins, which often work synergistically and can promote a more efficient metabolism of methylfolate within the body. The following product would be a good choice:

Multivitamin With Methyl Folate

Including methylfolate in a multivitamin supplement provides a broad spectrum of essential nutrients beyond just the B vitamins, will overall wellness and filling nutritional gaps in one’s diet, while still delivering the critical benefit of the bioactive form of folate – “methyl-folate”. The following is a high-quality multivitamin including methyl-folate:

A Potential Game-Changer: Could it Really Be Simple Vitamin Supplement?

In summary, when there’s a mutation in the MTHFR gene, as is the case with hEDS patients, there is a buildup of unprocessed folate and less of the active folate. Active folate helps control the MMP-2 enzyme. So, people with the mutation in the MTHFR gene have less active folate and high levels of inactive forms, which in turn lets MMP-2 run rampant. When MMP-2 gets out of hand, it starts breaking down a substance called decorin – the “glue” that keeps our tissues tightly held together. This cutting of decorin makes connective tissues looser and activates signals that lead to scarring. This ultimately results in the symptoms we associate with hEDS, like hypermobile joints and fragile skin.

Armed with this new understanding, researchers are now proposing that we may be able to manage hEDS symptoms by raising levels of active 5-methylTHF. Essentially, this just involves taking a supplement of the 5-methylTHF molecule, also known as methyl folate.

“You’ve got millions of people that likely have this, and until now, there’s been no known cause we’ve known to treat. It’s a big deal,”

Gregory Bix, MD, PhD – Tulane University

This isn’t just a game-changer; it’s a potential life-changer for the millions of people living with Ehlers-Danlos. And while more research is needed to fully validate this approach, the future of Ehlers-Danlos treatment is looking brighter than ever.

If you are new to Ehlers-Danlos, CNN published an interesting article on it in 2022.

This Article is Not a Substitute for Medical Advice

This information is provided for educational purposes only and is not a substitute for medical advice. Supplement Sciences does not provide medical care and cannot ensure the safety or effectiveness of any product for your personal use. Always consult your physician before starting any supplement, especially if you are pregnant, breastfeeding, or managing a serious health condition such as cancer, liver disease, or kidney disease. Dietary supplements are not designed to diagnose, treat, cure, or prevent any disease.

UNREVISED DRAFT

Secure Ordering | Free Shipping | Best Quality | Best Prices

Along with providing information on whether Folate supplements might be right for you, this article also links to Fullscript where you can buy high quality supplements. Order online through Fullscript’s secure healthcare formulary to get the best prices and free shipping on professional-grade supplements.

At last, there may be a new step forward in understanding Ehlers-Danlos Syndrome (hEDS), a complex condition that has puzzled many in the medical field for years. This article looks at new research suggesting that folate could be an important piece of the puzzle. You’ll also find links to order methyl folate supplements through Fullscript, making it easier to take that first step toward possible symptom support. Join us as we explore this new perspective on understanding and managing hEDS.

“This is real, it’s been vetted out well and clinically we’re noticing a difference,”

Jacques Courseault, MD – Tulane University

The What and Why of Ehlers-Danlos

Did you ever know a kid on the playground who could bend and twist themselves into strange positions? We used to call it “being double-jointed,” but that unusual flexibility can sometimes come from a condition you may not have heard of—Hypermobile Ehlers-Danlos Syndrome, or hEDS. This condition mainly affects the body’s connective tissue, which is like the glue that helps hold everything together. People living with hEDS can have unusually flexible joints and fragile skin, along with other symptoms that affect daily life in many ways.

Hypermobile Ehlers-Danlos Syndrome can create a range of health challenges. Many people feel tired all the time, which makes it hard to keep up with day-to-day activities. Joint pain is another common problem, and for some, it can go from mild discomfort to pain that never seems to let up. Some people with hEDS also have Postural Orthostatic Tachycardia Syndrome (POTS), which causes a rapid heartbeat and dizziness when they stand up. On top of that, joints may partially dislocate—a problem called subluxation—adding to pain and making movement more difficult.

Diagnosing and managing hEDS is far from simple. Because its symptoms can affect many parts of the body and seem so broad, doctors who don’t know much about hEDS sometimes mistake these patients for people just seeking attention, and they may be sent to mental health professionals instead. Standard tests often come back normal. Unlike some other conditions, there’s no clear lab test or genetic marker for hEDS, so people can spend years trying to get the right diagnosis. This long road can be exhausting. Many people give up trying to explain their symptoms because they have not felt heard or understood for so long.

The Breakthrough Discovery: Unusual Folate Levels and the MTHFR Connection

On the frontlines of learning more about Ehlers-Danlos, a group of researchers at Tulane University has shared an interesting finding. After caring for many people with hEDS at their clinic, they began to notice something unusual: these patients often had higher-than-normal levels of folic acid in their blood.

When they looked closer, they found that these high folate levels were often seen alongside changes in a gene called MTHFR. This gene helps the body make an enzyme that turns folate, a B vitamin, into a form the body can actually use

The link between high folate levels and changes in the MTHFR gene in people with Ehlers-Danlos came as a surprising insight. The research team then tied this finding to animal studies showing that 5-methylTHF, the active form of folate, helps turn off an enzyme called MMP-2. This enzyme, known as matrix metalloproteinase 2, breaks down a molecule called decorin — which acts like the glue that holds the framework around cells together. When decorin gets broken apart by MMP-2, the result is connective tissue that doesn’t stay firmly in place.

The Proposed Solution: Methylated Folate Supplements

The Tulane researchers’ findings suggest an interesting option for managing hEDS symptoms: a supplement containing 5-methyltetrahydrofolate, or 5-methylTHF. This is a form of folate that the body can use right away without needing the MTHFR enzyme to convert it first [PMC10122021]

Dr. Bix explained, “It’s an innocuous treatment. It’s not dangerous, and it’s a vitamin that can improve people’s lives. That’s the biggest thing: We know what’s going on here, and we can treat it.”

Dr. Bix

You might wonder, “Why not just eat more foods high in folate?” It’s a fair question. The folate we get from food still needs to be converted by the body into 5-methylTHF before it can be used. This is exactly where the process breaks down in people with hEDS because of the MTHFR gene change. So, eating more folate-rich food won’t necessarily raise usable 5-methylTHF levels. In fact, it could lead to higher levels of unprocessed folate in the blood, which is part of the problem since high folic acid levels can raise MMP-2.

Taking a supplement with 5-methylTHF, also known as methylfolate, skips this conversion step. It’s like giving the body the exact fuel it needs in a ready-to-use form. This might help keep MMP-2 under control and ease some hEDS symptoms.

Check Your Methylation Status

Since the introduction of methylated B vitamins, some clinicians have noticed that having a gene variant like MTHFR that slows methylation is not the only concern. It’s also possible for someone taking higher doses of methylated B vitamins over time to become “overmethylated.” While this idea is not fully accepted in mainstream medicine, some doctors and researchers in functional medicine have seen it in practice. Overmethylation can bring on symptoms like anxiety, trouble sleeping, and feeling more irritable than usual.

When it comes to testing for methylation, there are two main types: tests that look at your genes and tests that check your current methylation status. Many of these tests can be ordered online without needing a prescription.

• MTHFR by Cell Science Systems: Specifically tests for MTHFR gene variants.
• 3X4 Genetics Test + Blueprint Report by 3X4 Genetics: includes MTHFR along with an excellent report on the most relevant genetic variations.
• Methylation Profile by Doctor’s Data: Gives insights into a person’s current methylation status, which can guide supplementation.
• Homocysteine by Access Labcorp Draw: This test can indicate methylation status.

When you purchase linked products presented on this page, Supplement Sciences, LLC receives affiliate fees so that our dietitians can continue to create great content.

Thank you for your support!

Choosing the Right Folate Supplement

When thinking about adding methylfolate to your routine, it can help to look at the benefits of taking it as part of a B-complex or a multivitamin. Each option has its own advantages, depending on what you need and what your health goals are. It’s also worth remembering that where you get your vitamins matters too.

B-Complex with Methyl Folate

Taking methyl folate as part of a B-complex supplement ensures you receive an optimal balance of all eight essential B vitamins, which often work synergistically and can promote a more efficient metabolism of methylfolate within the body. The following product would be a good choice:

Multivitamin With Methyl Folate

Including methylfolate in a multivitamin supplement provides a broad spectrum of essential nutrients beyond just the B vitamins, will overall wellness and filling nutritional gaps in one’s diet, while still delivering the critical benefit of the bioactive form of folate – “methyl-folate”. The following is a high-quality multivitamin including methyl-folate:

A Potential Game-Changer: Could it Really Be Simple Vitamin Supplement?

In summary, when there’s a mutation in the MTHFR gene, as is the case with hEDS patients, there is a buildup of unprocessed folate and less of the active folate. Active folate helps control the MMP-2 enzyme. So, people with the mutation in the MTHFR gene have less active folate and high levels of inactive forms, which in turn lets MMP-2 run unchecked. When MMP-2 gets out of hand, it starts breaking down a substance called decorin — the “glue” that keeps our tissues held tightly together. This cutting of decorin makes connective tissues looser and activates signals that lead to scarring. This usually results in the symptoms we see with hEDS, like hypermobile joints and fragile skin.

Armed with this new understanding, researchers are now proposing that we may be able to manage hEDS symptoms by raising levels of active 5-methylTHF. Essentially, this just involves taking a supplement of the 5-methylTHF molecule, also known as methyl folate.

“You’ve got millions of people that likely have this, and until now, there’s been no known cause we’ve known to treat. It’s a big deal,”

Gregory Bix, MD, PhD – Tulane University

This isn’t just a game-changer, it’s a potential life-changer for the millions of people living with Ehlers-Danlos. And while more research is needed to fully validate this approach, the future of Ehlers-Danlos treatment is looking brighter than ever.

If you are new to Ehlers-Danlos, CNN published an interesting article on it in 2022.

This Article is Not a Substitute for Medical Advice

This information is provided for educational purposes only and is not a substitute for medical advice. Supplement Sciences does not provide medical care and cannot ensure the safety or effectiveness of any product for your personal use. Always consult your physician before starting any supplement, especially if you are pregnant, breastfeeding, or managing a serious health condition such as cancer, liver disease, or kidney disease. Dietary supplements are not designed to diagnose, treat, cure, or prevent any disease.