Supplements

Does anyone take connective tissue supplements like MSM, zinc, or silica? And have you noticed any difference at all? Any other supplements that might help? Thanks!

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Hi Glitterfuz,

I have not used any collagen products as they make absolutely no sense to me. EDS means my body produces defective collagen...the instructions are messed up. So taking a supplement of another form of collagen does not seem likely to counteract my body's messed up genetic instructions. Add to that that there are at least 26 different types of collagen in our bodies and the bottles of these products do not identify which type of collagen they are supposed to be supplementing and it seems highly suspect to me. But that's just me.

I am going to copy and paste a response that EDSerMark gave to this same question on the EDNF Facebook page:


There are personal stories that say they might help, but there is scant scientific study that I can find; a lot of collagen product sites report a Harvard study that shows they work, but curiously, I haven't been able to find the original study anywhere. I do find reports of two other studies, too. For a good overview, look at "Collagen supplements benefit and side effects, dosage and type, by Ray Sahelian, M.D." at http://​www.raysahelian.com/​collagen.html — he seems to be objective.

Also, look at "Safety and efficacy of undenatured type II collagen in the treatment of osteoarthritis of the knee: a clinical trial" full article at http://​www.ncbi.nlm.nih.gov/pmc/​articles/PMC2764342/​?tool=pubmed

These are studies, though, of people with arthritis, not EDS patients, and it's likely these people were all producing normal collagen on their own, not trying to correct a DNA coding problem.

It seems unlikely to me that it would survive our digestion absorption problems, be absorbed into the blood, be carried to where it was needed, and then be chosen over the bad collagen we produce. It's far more likely digestion would break the collagen in the pills into digestible components, then our bodies would attempt to reassemble those components, but because the genetic blueprint is bad, would assemble them into the same bad collagen we produce normally.

The bigger problem is there are no regulations to control what kind of collagen or how much are in supplements.

There are some warnings associated with commercially available collagen, BTW, from http://www.ehow.com/​about_4743039_risks-collage​n-supplements.html

"The actual effects of collagen supplements are debatable. There are few studies on the effects of collagen supplements in easing conditions such as osteoarthritis...

"Side Effects: The risks of side effects vary, depending on what kind of collagen treatment you receive. Oral collagen supplements mainly pose a danger if you have food sensitivities. Most brands are made from collagens derived from cow or chicken products.... People with autoimmune disorders (such as herpes simplex) can expect a flare-up as the body reacts to the foreign substance.

"Warning: If you'd like to try oral collagen supplements, be aware that the supplement industry is not regulated--so it's hard to know the potency of the collagen you're taking. Be sure to tell your doctor that you're trying collagen supplements."

I'd definitely recommend that latter sentence: discuss it with your doctor(s). [EDSerMark]"

Here is what is written on the EDNF website about this question: http://www.ednf.org/index.php?option=com_content&task=view&id=1525&Itemid=8 8888988

I take Vitamin D3 due to low levels (Dr. Levy believes EDSers should have levels at least at 40) which also helps with pain. I also take Calcium to prevent osteopeorosis as well as on the advice of my urologist for a history of kidney stones. Additionally I take Vitamin C as there have been a number of studies suggesting it helps with things like tissue healing which I need as I dislocate frequently and my genetecist (Dr. Levy) recommended it for me.

Always consult your doctor before adding any supplements as they can interact with medications you may be taking and it is not wise to supplement in areas you have no deficiency.

Good luck...

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Have read that the supplement, Biotin, (usually taken for hair loss and healthier nails, etc.) MAY help with our defective collagen while not necessarily its main usage intent. (Believe it may have been on one of these forums where someone spoke of it!) I am going to start taking this - on a trial basis. If nothing else, it may help me with my thinning hair. But my main HOPE is that it will help the
connective tissue pain . . .

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My daughter is taking MSM and using it as a lotion. She is still on to low of a dose to know if it will be of any help. But because of her stomach problems slow and low is the way to go. I also have her beginning to take a low dose of I-Flex which is vitamin c that is made from a specific rose hip. It is patented. It is supposed to help with joint pain. It is expensive for a vitamin c but sic=nce she neds to take it anyway I thought we would try this one. Again we are just starting with it so it will be ahile before we get her to dose that will help.

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I will be discussing Pycnogenol with my doctor next time -- it looks like it has a lot of benefits. If not for EDS, it may be a good supplement to try overall. I like that it strengthens blood vessel walls/capillaries and increases circulation.

http://www.quantumhealth.com/news/pycnogenol_about.html

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My husband takes about 1.5x the recommended amount of Glucosamine/MSM/Chrondroitin. He's been doing so for years and says that he experiences joint pain when he forgets a dose. Whether it works chemically or as a placebo, I'm not sure. But he likes it and it makes him feel better.

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Currently, I am taking L-Lysine, L-Carnitine, time-released Vitamin C and a Super Food supplement. I am also using a Vitamin C cream (Avalon organics) and am only seeing a mild difference. I started the supplements in March, when I found out I might have EDS III. I wanted something to help with the pain, mostly. I had been using Glucosamin/Chondroitin with MSM (per my surgeon) and was also using White Willow Bark (to no avail; a waste of time and money, really, for me).

Each person responds differently to different supplements and I have yet to try the one's you have listed. The glucosamine with chondroitin and MSM is supposed to be taken twice a day, but I only take it once, since my body is hypersensitive to many things; drugs and supplements included. Am also post-surgery for my knee by not quite two months and today the doctor was amazed at my progress in terms of hiking and the like, so I am fortunate in that I am sticking to exercises and not experiencing too many subluxations and the pain those cause (whew). I am finding what my ROM is within the new boundaries and am learning to cope as well as I can as I go. All I can say is, we each need to find what helps each of us. There are so many ideas out there, we need to use what works for us and toss out what doesn't, without giving up entirely....

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"The Linus Pauling Institute's Micronutrient Information Center is a source for scientifically accurate information regarding the roles of vitamins, minerals, other nutrients, dietary phytochemicals (plant chemicals that may affect health), and some foods and beverages in preventing disease and promoting health. All of the nutrients and phytochemicals included in the Micronutrient Information Center may be obtained from the diet, but many are also available as dietary supplements."

http://lpi.oregonstate.edu/infocenter/

-- best resource I've seen on supplementation and/or food sources of nutrients ... as well as what one nutrient does or requires in the context of other nutrients

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I have done trials of MSM glucosamine with chondroitin and shark cartilage and number of other things. I would give them at least nine months and stop for a whole week to measure things up. Nothing has ever worked. I take vitamin C and that is it. I haven't found any narcotics that work for pain either. They will get me high but don't ever reduce the pain. Ice is my best and worst friend since I am freezing under about 74 degrees. Anyone else out here sensitive to the cold?

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My mother has Raynaud's and is very sensitive to cold (has been all her life). I have a low tolerance for cold, too. Moist or damp cold really get to me and I live in the worst place for it and have to wear layers of clothes in winter even though it very rarely snows here or gets below 20 degrees F. And summers are bad because of the fog (I live on the northern California coast and am considering a move inland, but extreme heat, such as what I experienced last week, gets to me too).

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I have been taking DHEA and CoEnzyme Q10 for the past year and it does not seem to be doing me any harm but at the some toss of the coin I cannot attribute it to being what has been making me better.

From what I am finding on B12 it apears to have a lot to do with our overall health up to and including building good cells and collagen. Of course they say that D1, D3, C, A, B6, B1, and B3 are important too but special emphasis is placed on B12's doorstep.

I have been trying to study on it as much as I can and it is really fascinating, but it is really taxing my old brain.

Theorically though the standard Cynocobolimin that is added to most foodstuffs is the cheapest and worst way to go, when your body does absorb it when it strips off the carbon atom it produces cyanide in your system but in small enough amounts that is is not supposed to be hazardous to us.

In some of our systems although we can have great serum levels of B12 our bodies actually can not absorb it and when it does not our bodies deteriorate and we start making bad copies of cells and collagen, when that happens depending on the individual and the severity of the lack of B12 it can produce all of the criteria for things like MS, Alheimers, EDS etc. because without high enough levels of the required b12 in the spinal fluid everything starts short circuiting so you get things like brain fog, nueropathy, fatigue, etc.

Currently I am taking Methylcobolimin the better form of B12 that does not have to have the carbon atom removed before our bodies can use it and trying to find the level that I will have to take each day to make up for how much the doctors have been injecting in me each month to reverse my bodies defective cycle but I have not found the magic number yet.

But now I am a believer, where used to I was taking great amounts of opiates each month risking kidney and liver damage by now taking what would be considered foodstuffs my body is less painful and feeling healthier, it was accidentally that I discovered b12 made my body heal better because I was having prolo done and the doctor was adding b12 into the solution. But when my serum levels were over 2000 because of the amount he was injecting into me each time my body was getting stronger and less painful and the only thing on my bloodtest that was changed was my b12.

And once I started researching B12 and what all it affects lo and behold if it doesn't seem to be one of the most important things our bodies need for proper replication and healing, and it is estimated that twenty percent of the population have problems to some degree with it's absorbtion.

I hope that technology continues to improve and that in a few years we can have a little interface that we can plug into our computer and give it a small blood sample like for blood sugar and it let us know the amount of nutrients in our bodies and allow us to modify our vitamin and mineral intake on an individual basis to keep our bodies at their peak effciency.

I think that then we will finally be able to rid ourselves of some of the current medical problems that society now has, it is said that in Japan where the minimum standard for B12 is twice what it is in America and they treat with the better quality Methylcobolin that they have almost eradicated MS and Alzheimers. If we could all have individualized results I wonder if we could wipe out diabetes and things like that as well?

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from one old texan to another (fort worth & dallas, now a virginian) you have sold me on b12!

i take L-carnitine ?? once a day, MSM 1000 twice a day, d3 2000 twice a day, a multivitamin, coQ-10 ?? twice a day, E 400 twice a day. it looks like i will be adding b12. when i was in the hospital they made a point that my d3 level was very good, as if that is unusual to see.

i used to take vitamin K and thought it helped a lot with all the little bleeds i have (bruises pop up a lot) but since my brain aneurysms and the stent that was inserted i cannot take it. vitamin K is considered a blood thickener because it helps with clotting. a real no-no for the stent. duh, i didn't realize that. when i got out of the hospital i started taking all my supplements again. the doctor's assistant freaked out when she learned i was taking the K. all's well.

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That's right, I forgot to mention I take Fish Oil as well, and have been for a few years now... Whenever I was scheduled for surgery they would ask me to stop the Fish Oil a couple of weeks in advance because supposedly it can make your blood thinner or bleed a little longer.

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I have been taking Twin Labs Type II collagen for 10 years, as the Gluco/Chrond did not work. When I forget to take it I feel worse. I am currently off Calcium, potassium and magnesium citrate until my nephrologist determines if any of them are harming my kidney function and creating kidney stones, but I miss their pain and cramp relieving contributions. I take chewable c 500 (for stones) D1000, Omega 3, Lutein, selenium, sublingual Methylcobolimin/B12 and Deplin (super folate). My chiropractor also suggested malic acid and MSM but as usual most things upset my stomach. I learned Reiki Level 1 and II which helped me, my late mother and dad who also had hypermobility and muscle/tendon/ligament/ruptures and hernias. The Reiki also helped me recuperate from my second knee surgery-meniscus. I have made an assortment of rice bags of different shapes and sizes for various parts of the body and can go to sleep using them. I also use Young Living therapeutic grade essential oils. I use a simple compounded microfine zinc facial cream for my Rosacea and use Reiki and a huge Tiger Iron Palm stone for Raynaud's in the winter next to my feet. The Tiger Iron holds heat and the hematite in it helps with circulation. I have tried some of the other supplements mentioned here like Silica but I just can't remember to take all that stuff and really prefer simplicity. I do plan to go back on the Muessler cell salts and give the Bach Flower Remedies another try as the experiments were interrupted. I have a variety of moldable coldpacks when cold is needed for fresh injuries. Neurontin 1200 mg, Lexapro 15mg, 600mg Tylenol Arthritis and my Duxiana bed have helped me sleep for the last 15 years. I have a variety of pillows because my needs vary. My neuro problems are both heredity and due to 3 different whiplashes due to inattentive male drivers running into the back of my car over the years. Some of the pills mentioned help that and the subsequent cognitive problems, too. Pain pills, sleeping pills, NSAID's don't work and tend to make me feel worse. My favorite modality is watching funny shows like Psyche because the constant laughing makes me feel so much better, as it always has, and takes my mind off the other things.

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Only you can delete what you have written. Click "delete" by your user name. Notice how that "delete" opion is only on what you write but no one elses responses?

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can anyone pls tell me the good dose for vit d? my bottle says 10ug(not an acutal u, a u w a long line...) it says not to take more than 1. i KNOW i dodn't get enough vit d. what about other supplements like lactulose or other probiotics; don't know about them. see my new endo soon and need to understand PLUS try to explain in fr!
btw, my real name is lisa; you can use either. bisho is this little white japanese spitz of mine; also have a mini blk poodle hayley.
ps is it possible to post more than one pic? thanks all

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SlapASmileOn ~ I just wanted to thank you for the sound information and advice given here as various people ask questions. I tend to just be a lurker, but I've used a number of the links you've posted and they've been very helpful. Thanks!

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To Bisho ~ you might get an idea from your doctor on how much D3 to take based on your lab results. I'm currently taking 5000 IU daily to raise my D3 levels. Hope this helps!

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Bisho, Look in my journal for the latest endocrine societies guidelines
Also, Holick, MDs book : the Vit D Solution outlines everything.... can be downloaded

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