Ehler’s Danlos Syndrome and Copper Dysregulation

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There are countless illnesses out there that are considered genetic, but what if they truly weren’t? What if things only appear genetic because we are passing down nutrient deficiencies and imbalances, as well as lifestyles and habits? The soils in the US have been depleted for nearly 100 years now, the rise of processed foods began shortly after, and the overuse of antibiotics (as well as other pharmaceuticals) has ruined our nutritional status even further. 

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Ehlers–Danlos syndrome, and the symptoms associated with it, is one of those illnesses that might be due to nutritional imbalances and toxicities.

Many genes are actually nutrient dependent as well! Vitamin A and copper are both nutrients that play a big role in gene expression. Vitamin A also plays a big role in copper dysregulation, which can create issues with connective tissue, joints, and muscles, all of which are a part of Ehlers–Danlos syndrome. Whole food vitamin C is also a crucial nutrient for tissue repair, collagen formation, immune system health, plus is very important for joints, blood vessels (think varicose and spider veins!), teeth, bones, and skin.

From Linus Pauling Institute: “Copper is an essential cofactor for oxidation-reduction reactions involving copper-containing oxidases. Copper enzymes regulate various physiologic pathways, such as energy production, iron metabolism, connective tissue maturation, and neurotransmission”.

Even a slight copper imbalance can contribute to impaired immunity, bone issues, and neurological and cardiovascular diseases. Copper helps certain gene transcriptions, plays a part in the production of melanin (helps skin pigmentation), and also has a huge role in Superoxide Dismutase, an important antioxidant.

What is EDS?

From Ehlersdanlossyndrome.org:

Ehlers Danlos Syndrome is a disorder that deals with the connective tissue. It is inherited and cannot be passed on any other way….This disorder essentially causes a severe defect in the product of collagen. Collagen is responsible for providing your muscles and skin with elasticity and firmness…Surprisingly EDS isn’t too uncommon, about 1 in every 5,000 children born will have EDS…There are six specific types of EDS that stand out to scientists and medical professionals…..”

When I first read about EDS a few years ago, the first thought I had was, “Well which nutrient deficiency does this sound like? Connective tissue, collagen and skin issues, joints, possible cardiovascular issues. Duh, COPPER!” Copper dysregulation is incredibly common these days and I rarely see anyone with ideal copper balance. And in the above phrase about how there are 6 types of EDS: hmm sounds an awful lot like variations in the severity of the deficiency!

Common EDS Symptoms that are also related to copper dysregulation:

  • Lax joints
  • Inability to hold a chiropractic adjustment because of the severity of lax joints
  • Muscle pain
  • joint pain
  • fragile skin
  • easy bruising
  • Chronic degenerative joint disease
  • POTS
  • Varicose or spider veins
  • History of aneurysms
  • GERD/hiatal hernia
  • Raynaud’s
  • Carpal tunnel
  • Heart Murmur
  • Osteoarthritis

Copper Dysregulation symptoms:

Copper Deficiency Symptoms:
Anemia
Fatigue
Decrease in number of white blood cells
Osteoporosis
Nerve damage can cause tingling and loss of sensation in the feet and hands
Confusion
Irritability
Depression
Impaired Coordination
Vitamin B12 deficiency
Iron deficiency
Low blood levels of fat-soluble vitamins, zinc, and folate
Hypochromic anemia
Neutropenia
White, gray and silver hair
Hemorrhoids
Varicose veins

Copper Excess Symptoms:

Feelings of doom
Fatigue and exhaustion
Hypothyroid (slow thyroid)
Mind is in a fog
Headaches, migraines
Mood swings
Super-sensitive, weepy
Cold hands, and/or feet
Depression
Dry skin
Chocolate cravings
Feeling of loss of control
Paranoia
Despair, suicidal feelings, hopelessness
Arthritis, calcium spurs
Constipation
Racing heart, pounding heart
Adverse reaction to vitamins and minerals
Problems with concentration and memory
Short attention span, ‘spaciness’
Eating disorders: anorexia, bulimia, overeating
Panic attacks, high anxiety, free floating anxiety
Yeast infections (candida)
Aching muscles or muscle cramps
Hypoglycemia
Mind races — insomnia, interrupted sleep
PMS
Mononucleosis
Low blood pressure
Obsessive thoughts

(These lists are from This Article on nutritional balancing)

Do any of those symptoms sounds familiar? Then read on!

How to Test for and treat Copper Dysregulation

A hair tissue mineral analysis is a huge part of the healing process. This will not only show you the relationship between your zinc and copper, but it will give you an idea on the state of your adrenal glands. Strong adrenals are needed to balance copper. An HTMA will also show your magnesium and calcium levels, which both play a part in regulating copper.

The blood tests that are very helpful are copper serum, plasma zinc and ceruloplasmin. Once you have those tests, there will be a specific calculation to do that determines the “unbound/toxic” and “bound/usable” copper levels. This number will depend on the ceruloplasmin level. Many people are still all about copper “toxicity” and detoxing the copper, but in reality when you focus on ceruloplasmin production, this unbound copper will decrease. Most people have a very low ceruloplasmin level and very low usable copper!

 Ceruloplasmin Production

Ceruloplasmin production depends on a few things. Sufficient adrenal and liver function is required to help make this protein. Ceruloplasmin is also dependent on animal-based retinol (AKA real vitamin A), whole food vitamin C, and copper itself.

There are actually many things that inhibit ceruloplasmin production as well. Obviously the biggest problem with creating sufficient ceruloplasmin is our overloaded livers from environmental toxins. Preventing the liver from becoming sluggish is key to making ceruloplasmin available. Other offenders include supplemental iron, calcium, and vitamin D, high fructose corn syrup, ascorbic acid, and stress.

Ceruloplasmin in is the key to regulating copper and iron. CP is also needed for neurotransmitter health, management of yeast, parasites, and other nasty stuff, and it is important for ATP regulation (aka energy production!)

Other helpful ideas for healing from EDS:

Aloe Vera: Aloe vera is one of the most versatile and amazing herbs out there. It helps immensely with gut and liver health, it helps heal joints, and it can increase nutrient absorption as well.

Collagen: If you have a collagen deficiency, it helps to actually consume collagen! I love Perfect Supplements grass-fed collagen. We start to lose the ability to create our own collagen once we hit our 20s so using collagen as a supplement can help quite a bit with joints, muscles, and also gut healing. If you have gut issues, you’re likely not digesting and utilizing protein very well so collagen can also help with that. It is a very easily digested protein!

Do you have EDS? What helps you with symptoms, or have you healed yourself?

 

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11 Replies to “Ehler’s Danlos Syndrome and Copper Dysregulation”

  1. Kristin, we are awaiting a diagnosis of Williams Syndrome for our son. If positive it will mean he has deletions on the 7th chromosome…the elastin gene. They checked him for hyper flexibility, and seemed satisfied that he was hypermobile. Oddly, he never struck me as hypermobile. I was much more flexible as a child!

    Does EDS have anything to do with the elastin gene? I am curious because I will use biomedical extensively to keep our boy as healthy as we can. I already know he is high copper/low zinc and mag.

    1. Hi Jaye! I have not looked into the elastin gene so I’m not sure if there is a connection. It is quite possible. So many nutrients are needed for gene transcription.

  2. Hi I have been recently diagnosed with Fibromyalgia. EDS type 3, possible POTS, and being checked for chiari malformation. I have always known something was wrong I wasn’t believed by anyone. I’m only 17 and very afraid. I’m tired of being told it’s anxiety. I’m tired of waking up and wanting the day to end already. Anything you reccomend for managing POTS naturally or EDS? I’m currently healing my gut and thinking of going paleo.

    1. Hi Susana, I am sorry to hear all of that. I was 17 myself when I first was diagnosed with fibro and it is the worst age to deal with these things. I do have an article on POTS that you can search for. I would highly recommend getting the HTMA and the blood tests for copper, zinc and ceruloplasmin. Gut healing is a perfect start too. Good luck!

    2. Susana… look into the Cusack Protocol… a mother whose whole family suffered from EDS and they were all in a wheelchair due to EDS…. the protocol has helped them out of their wheelchair and they remain as such provided they continue with the protocol…. !! In a just a couple of months, the protocol has helped me greatly….!!

  3. Hi Kristin I find this interesting as last year we changed a supplement that had magnesium citrate in it. Myself and my 2 DDs got really ill and tiny water blisters appeared on our torsos. We ached and felt more fatigued than the EDS and Porphyria illnesses make us have.
    I found out that the magnesium citrate can adversedly affect the ceruplasmin levels.
    Our liver is toxic from the porphyria attacks (VP) and our adrenals are not strong either.
    Can you tell me why did our bodies react so badly to the Magnesium citrate?
    And should I tell our Dr about the strong reaction?
    TIA

    1. Hi Angela, citrate tends to be pretty irritating to the gut for the most part, and as you said it can negatively influence ceruloplasmin levels. Most people with EDS do tend to have low bound copper, so anything that messes with ceruloplasmin can be an issue. Also, magnesium on its own can create problems if sodium and potassium are also low!

  4. I am suspected of having EDS hyper mobile type. I also have homozygous MTHFR C677T with moderate mitochondrial symptoms. I have symptoms of both high and low copper, but supplementing zinc picolinate has helped many of my symptoms, so I must have high copper? I crave vitamin C like a fiend and always have; we used to get rolls of chewable C when I was a child, and I could go through a whole roll in one sitting, much to my parents’ shock. Of course, they assumed I thought it was candy rather than taking me to a doctor to see what might be wrong. Even now, I get immune dysfunction on a daily dose less than 2 g of vitamin C in divided doses. Does anyone else have this problem?

  5. For Susanna, my son had POTS and hypermobility along with chronic headaches, body temp regulation issues and gut pain. Finally got relief through an atlas adjustment by an atlas orthogonist chiropractor. Apparently, the atlas misalignment can cause increased CSF pressure and also pressure on the vagus nerve, disrupting autonomic function. The Chiari malformation would cause similar problems with CSF pressure and possibly the vagus nerve. My son’s headache relief was immediate (!) and the other symptoms resolved slowly over 2-3 weeks.

  6. I should add that the hypermobility itself did not resolve so quickly. Four years later, his joints are still somewhat lax, but he hadn’t subluxed a joint during four years until this Spring. He now has developed a winged scapula which was primarily from overtraining for his rowing team. We can’t be sure it’s from connective tissue problems, or if it’s just from overtraining.

  7. Hi, thanks for your insights. Do you have Ehlers-Danlos Syndrome? I was on a whole foods vegan diet for 5 years and then a raw foods diet for another year and saw no improvement in my health. I ran on the beach, took hikes, avoided toxins, used only natural body products…plus, I lived in San Francisco, where the air quality is pristine. So I’m curious as to what you did differently.

    Also, from what I’ve read and tried, taking collagen doesn’t do anything to fix the structurally defective collagen produced by the body. So I’m wondering if you have had success there, and if so, what form of collagen you took.

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