Collagen Disorder Is Ruining My Family's Life. Help Me Break The Curse

BearWithMe

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May 19, 2017
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My mother, my grandmother, her brother, my great-grandmother and I have had the same health issues during our lives. I just have realized they all can be linked to collagen.

  • Tooth problems - not a typical decay, more like healthy teeth randomly crumbling (and then decaying)
  • Joint issues (osteoarthritis) from early age
  • We all are prone to hernias
  • We all have (had) debilitating digestive issues, that were never diagnosed or explained by healthcare professionals, nor they respond to any conventional treatments (I believe it is undiagnosed hiatal hernia)
  • Varicose veins, brittle veins, bleeding, also from early age
  • Brown spots, dry skin
  • Vision / hearing problems, sound sensitivity

We all share some other health issues - gallbladder problems, depression, neurosis, fatigue, brain fog, migraine headaches, alcohol intolerance. Not sure what to make out of these.

What disorder could it be? How to get it diagnosed? What kind of tests could be done?

And most importantly, what dietary / lifestyle / supplementation changes could we do to help ourselves?
 

boris

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Oct 1, 2019
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Joint issues and teeth crumbling for me it was an issue of too much phosphate and too little calcium. Eating 100-200g of parmigiano reggiano or grana padano a day fixed it. When I stop eating it, I get painful sensitive tooth necks. When I reintroduce the cheese, the pain goes away.

For bleeding issues you need K2: Cheese, liver, cooked greens.
 

MrGilbert

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Sep 11, 2020
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How is your diet? Sounds like you might have some mineral deficiencies. I would try supplementing magnesium, potassium & boron.
 

SamuraiJack

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Sep 8, 2019
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Sounds like copper deficiency to me on paper for sure. Taken zinc without copper?
Copper along with Vit C is vital for collagen synthesis as well as bone mineral density along with other nutrients.
I'd get blood tests done.
 

mostlylurking

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I had lots of connective tissue problems, including hyper mobile joints as a child. I got an optimized supplementation of natural desiccated thyroid (Acella brand) 6 years ago (at age 65) and my connective tissue issues have disappeared, including the scoliosis. I think you should consider getting your thyroid tested. Read up first: Programmable Search Engine

I also had very low stomach acid so had mineral absorption problems. This is also caused by hypothyroidism but can also be caused by a thiamine deficiency. Thiamine is really important and a deficiency can severely damage oxidative metabolism and cause lactic acidosis which causes inflammation. Thiamine must be taken with magnesium or supplementing it will increase serotonin and that makes inflammation worse.
 

BearWithMe

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Sounds like copper deficiency to me on paper for sure. Taken zinc without copper?
Copper along with Vit C is vital for collagen synthesis as well as bone mineral density along with other nutrients.
I'd get blood tests done.
This is really, really good point! Indeed, I have supplemented zinc without copper for years, and my bloodwork results are not OK.

My total copper is within the range (16.6 μmol/l), but my free / unbound copper is very high (6.2 μmol/l - reference range 0-1.6) and zinc is also too high (27 μmol/l - reference range 7-23). My ceruloplasmin is normal (0.22g/l).

Not sure if this hints at copper deficiency, but my zinc/copper metabolism definitely isn't normal / balanced.
 

SamuraiJack

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This is really, really good point! Indeed, I have supplemented zinc without copper for years, and my bloodwork results are not OK.

My total copper is within the range (16.6 μmol/l), but my free / unbound copper is very high (6.2 μmol/l - reference range 0-1.6) and zinc is also too high (27 μmol/l - reference range 7-23). My ceruloplasmin is normal (0.22g/l).

Not sure if this hints at copper deficiency, but my zinc/copper metabolism definitely isn't normal / balanced.

After suffering from taking zinc alone by myself, it should be a crime to make zinc without copper.

Unbound copper is high which isn't a good sign, shows it's in the body but it's not being utilised at all. This could for sure be contributing to your collagen issues and perhaps mental state. What other symptoms do u have?

Stop zinc if you're taking any and the best thing is to hopefully let the body resolve this imbalance itself. I would stop taking any vit D for now and would supplement with vit c, retinol, mg and b complex to hopefully shunt the copper in the right, bioavailable direction.
 

Bogdar

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Sep 5, 2018
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Just been diagnosed Ehlers Danlos Syndrome. Sounds like you might be one of us lol
 

Diokine

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I think that this can be examined in the context of continual injury to the proteolytic apparatus of digestion - failure of the higher order systems (hypothalamus and especially pituitary,) to maintain the adrenals, which supply the agent responsible for oxidation (i.e. adrenoxidase, an outdated term for adrenaline or epinepherine.) This may be preceded by periods of excessive oxidation possibly contributing to vascular dysfunction and eventual sympathetic fatigue. Hypothyroidism also would render tissue less sensitive to oxidation and would significantly contribute to progression of injury. This lack of oxidizing potential can eventually lead to a deficiency of proteolytic enzymes made by the pancreas and sensitized by secretions from the spleen. Trypsinogen, the precursor to the protease trypsin, is activated by oxidation during properly coordinated digestion. Insufficient levels of trypsin would precipitate albuminoid (protein) in the blood, leading to progressive immune activation and autoimmunity. This leads to alterations in several classes of protease, i.e. serine protease, matrix metalloproteinase, etc. These alterations disrupt optimal function of fibroblasts and can contribute to connective tissue disorders.

Enzymes containing trypsin or other proteases may be helpful insofar they assist with complete digestion. I've found that during eating, it is very important to let the mouth fully process food. Imagine a juicy steak or some other tasty morsel, and observe the process of swallowing it. The satisfaction felt at the flavor and assimilation of essence can be extended to the stomach, essentially "squeezing" all the good stuff out of the food and into the belly. Protease deficiency can also be amplified by low NAD levels.
 

BearWithMe

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After suffering from taking zinc alone by myself, it should be a crime to make zinc without copper.

Unbound copper is high which isn't a good sign, shows it's in the body but it's not being utilised at all. This could for sure be contributing to your collagen issues and perhaps mental state. What other symptoms do u have?

Stop zinc if you're taking any and the best thing is to hopefully let the body resolve this imbalance itself. I would stop taking any vit D for now and would supplement with vit c, retinol, mg and b complex to hopefully shunt the copper in the right, bioavailable direction.
Just did some reading on copper deficiency / toxicity and I have many symptoms of both at the same time.

This is so complicated. Vitamin D (and possibly K) is the only fat soluble vitamin that doesn't make my tooth decay and other symptoms worse. Retinol and vitamin E are triggering rapid tooth decay. I'm supplementing Mg and getting plenty of vitamin C from citrus fruits with no ill effects, but some B vitamins (B3 and B12 especially) are also making the symptoms worse.

Does that hint at something?

What could be the reason my body doesn't utilize copper, even though it is getting good amounts of it from diet?

Is there any chance that supplementing copper might improve the situation? I need to do something really, really fast, otherwise I will lose all my teeth before I turn 32 :(
 
Last edited:

SamuraiJack

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Just did some reading on copper deficiency / toxicity and I have many symptoms of both at the same time.

This is so complicated. Vitamin D (and possibly K) is the only fat soluble vitamin that doesn't make my tooth decay and other symptoms worse. Retinol and vitamin E are triggering rapid tooth decay. I'm supplementing Mg and getting plenty of vitamin C from citrus fruits with no ill effects, but some B vitamins (B3 and B12 especially) are also making the symptoms worse.

Does that hint at something?

What could be the reason my body doesn't utilize copper, even though it is getting good amounts of it from diet?

Is there any chance that supplementing copper might improve the situation? I need to do something really, really fast, otherwise I will lose all my teeth before I turn 32 :(
Vit A could be increasing metabolism and causing calcium deficiency which is manifesting as tooth decay. Definitely up your calcium from milk/cal citrate. And put away the retinol if it's causing issues. I personally never use synthetic vit A, only from cod liver oil from time to time. Has all the cofactors. Taking it alone is too risky.

Try upping your magnesium (not to the point of diarrhoe) and adding some boron to keep the calcium in the body, does the same with magnesium too.

You can try a small amount with breakfast 1mg and see how u respond. I responded very well to it as i must've been deficient. It is a complicated issue for sure.

Check this for more deficiency symptoms if u haven't already.

 
Last edited:

BearWithMe

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Vit A could be increasing metabolism and causing calcium deficiency which is manifesting as tooth decay. Definitely up your calcium from milk/cal citrate. And put away the retinol if it's causing issues. I personally never use synthetic vit A, only from cod liver oil from time to time. Has all the cofactors. Taking it alone is too risky.

Try upping your magnesium (not to the point of diarrhoe) and adding some boron to keep the calcium in the body, does the same with magnesium too.

You can try a small amount with breakfast 1mg and see how u respond. I responded very well to it as i must've been deficient. It is a complicated issue for sure.

Check this for more deficiency symptoms if u haven't already.

I have 8 of 9 symptoms. This also explains why I'm reacting badly to things that stimulate ATP production. They might be simply exacerbate the copper deficiency.

Just received a copper supplement and took a first dose. Have high hopes. Thank you @SamuraiJack !
 
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