Cheri

[kim]

http://www.vitaminexpress.com/encyclopedia...Glucosamine.php

 

Glucosamine

Glucosamine is the amino sugar of glucose.

Glucosamine Sulfate is used in these conditions:

Glaucoma:

In a clinical study, glucosamine treatment was found to reduce high intraocular pressure in glaucoma patients. Some researchers believe that glucosamine’s effectiveness in the treatment of glaucoma may derive from it stabilizing collagen structures in the eyes.

Joint Health:

 

Glucosamine sulfate provides the raw material for chondroblasts to regenerate cartilage. Insufficient glucosamine sulfate is believed to be a major cause of osteoarthritis and supplemental glucosamine sulfate helps to repair damaged joints. It also functions as a raw material for the production of the hyaluronic acid that is the major component of synovial fluid.

and

 

Ulcerative Colitis:

 

Ulcerative colitis patients are known to have a defect in the glycosaminoglycans (including glucosamine) content of the defensive barrier of the gastrointestinal tract which permits various toxins to enter the body and cause the symptoms of ulcerative colitis. Supplemental glucosamine may be useful for ulcerative colitis patients by helping to repair this defect.

 

A clinical study found that glucosamine supplementation relieved the symptoms of ulcerative colitis.

 

Many physicians who prescribe glucosamine to their osteoarthritis patients have observed that glucosamine also provides relief from the symptoms of ulcerative colitis in patients suffering from both conditions.

 

 

 

Cheri,

 

I don't know how closely you have been able to follow the discussion here about sulfur, mostly found on Carolyn N's thread, but I did find this article interesting.

I'm so sorry that your husband is having to deal with this. I really had no idea what glaucoma was. It looks like there a varying degree's of severity and treatment?

 

Cheri, this subject of glycosylation, glycoproteins, the enzymes that aid in the formation of GAGS etc. is really looking like an area that I HOPE turns out to be at least a part of the puzzle for some. I'm looking for connections for your family, believe me.

 

Again, the sharing of this info, could be important in a bigger picture. May be important for my own son's. Thank you.

 

God Bless all under your roof!

 

Kim

 

I typed you quite a lengthy PM last nite and in a bump of the keyboard, it vanished.

[kim]

Cheri,

 

LOOK at these studies. It's not important that you understand everything in them Cheri, only making a case for a possible connection to our situation and some research that has been done. It's the involvement of the glycosaminoglycans, the possible problem with sulfur metabolism. It may be stemming from a different source (I wasn't sure any of what I had been studying was relavent to your guys) but it sure looks like there could be overlap here.

 

From above article (bolding mine)

 

In a clinical study, glucosamine treatment was found to reduce high intraocular pressure in glaucoma patients. Some researchers believe that glucosamine’s effectiveness in the treatment of glaucoma may derive from it stabilizing collagen structures in the eyes.

 

Now this

 

http://gut.bmj.com/cgi/content/abstract/53/1/85

 

Background: Crohn’s disease (CD) is characterised by inflammation, muscle layer overgrowth, and collagenous fibrosis of the intestinal tract, with no effective therapy against collagen accumulation.

 

and

 

RGTAs are chemically substituted dextrans engineered to mimic the growth factor protecting effects of heparan sulphates

 

*I'm wondering if there was ever enough heparan sulfate to protect in some instances?

 

and

 

Results: Total intestinal collagen production in CD patients compared with controls was increased up to 3.5-fold overall (p<0.001). In particular, collagen III biosynthesis was enhanced by 6.2-fold (p<0.001) in CD patients. In the CD-GC group, collagen production abnormalities were less marked. RGTAs added to the incubation medium in the CD group decreased total collagen production by 50% and decreased collagen III synthesis by 76%.

 

I thought I had found more studies on this but as I read back thru this info, I see where there isn't a lot in regards to glaucoma, more on Crohns. But, my intention was to see if there was a connection and from what I see, it's sure looks possible.

 

http://findarticles.com/p/articles/mi_m0FD..._74510830/pg_16

 

Based on the observation that open-angle glaucoma may be due in part to a hyaluronic acid deficiency, a researcher has postulated a beneficial effect of glucosamine sulfate (GS) for the treatment of glaucoma.[93] He cites two case reports in which glaucoma patients given 3 g/day GS for osteoarthritis reported substantial drops in IOP. Because glucosamine sulfate is also a substrate for chondroitin sulfate, which has been found to be elevated above normal in the trabecular meshwork in glaucoma patients, it would seem to have the possible potential of further aggravation of the condition. While this author has not heard reports of exacerbation with glucosamine sulfate, close monitoring of IOP in patients with glaucoma supplemented with GS seems warranted, not only to prevent potential harm but to monitor potential benefits of this supplement. Double-blind studies to confirm the potential benefit of GS in glaucoma are needed.

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1112190...Pubmed_RVDocSum

 

A pilot study of N-acetyl glucosamine, a nutritional substrate for glycosaminoglycan synthesis, in paediatric chronic inflammatory bowel disease.Salvatore S, Heuschkel R, Tomlin S, Davies SE, Edwards S, Walker-Smith JA, French I, Murch SH.

University Department of Paediatric Gastroenterology, Royal Free, London, UK.

 

BACKGROUND: The breakdown of glycosaminoglycans is an important consequence of inflammation at mucosal surfaces, and inhibition of metalloprotease activity may be effective in treating chronic inflammation. AIM: To report an alternative approach, using the nutriceutical agent N-acetyl glucosamine (GlcNAc), an amino-sugar directly incorporated into glycosaminoglycans and glycoproteins, as a substrate for tissue repair mechanisms.

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1046566...Pubmed_RVDocSum

 

Med Hypotheses. 1999 Apr;52(4):297-301. Links

Glycoaminoglycan (GAG) deficiency in protective barrier as an underlying, primary cause of ulcerative colitis, Crohn's disease interstitial cystitis and possibly Reiter's syndrome.Russell AL.

Ulcerative colitis, Crohn's disease and interstitial cystitis share many common features, the most important of which is a defect in the glycoaminoglycan (GAG) defensive barrier. This defect allows penetration of toxins causing localized inflammatory response, followed by fibrosis and distant pathological changes, together with a myriad of biochemical and immunological changes.

 

This one is too precious

 

http://www.ncbi.nlm.nih.gov/pubmed/1046566...Pubmed_RVDocSum

 

Med Hypotheses. 1999 Apr;52(4):297-301. Links

Glycoaminoglycan (GAG) deficiency in protective barrier as an underlying, primary cause of ulcerative colitis, Crohn's disease interstitial cystitis and possibly Reiter's syndrome.Russell AL.

Ulcerative colitis, Crohn's disease and interstitial cystitis share many common features, the most important of which is a defect in the glycoaminoglycan (GAG) defensive barrier. This defect allows penetration of toxins causing localized inflammatory response, followed by fibrosis and distant pathological changes, together with a myriad of biochemical and immunological changes. The latter has caused confusion as to etiology of the aforementioned disorders. This hypothesis is somewhat supported by the fact that agents such as glucosamine and pentosan polysulphate (Elmiron) that replace the GAG layer, improve the conditions. The potential for extrapolation of this hypothesis to atherosclerosis and arthropathies exists. There is a great danger in modern medical research that if one misses the wood for the trees, one becomes hopelessly lost in the minutiae of research. At present, it is embarrassing that ulcerative colitis (UC), Crohn's (CR) and interstitial cystitis (IC) are the cause of a great deal of morbidity and occasionally mortality, yet after intensive research, the etiology and effective treatment eludes us. The research in the past has focused extensively on inflammatory response in the mucosal lining, and biochemical, infective and immunological changes in the serum. This has led to a vast array of research pathways that seem at the present time to be totally lost and, might I say, aimless in direction, as a cause for these conditions, that remain amongst the most imperically treated in modern medicine. Another possible syndrome in this class would be Reiter's, which has many features in common with the above. The basic tenet of a GAG deficiency hypothesis is that, as shown in Figure 1A, an intact GAG layer provides, firstly, a mechanical and electrostatic defence against penetration of infective agents, toxins, antigenic protein moieties, etc. and, secondly, the prevention of extravasation of body fluid components. A degraded GAG layer is the start of the disease cascade of the above group of illnesses

[Chemar]

wow Kim, what a wealth of info! thanks

 

I am just stopping by quickly as exhausted so wont post long. Thankful to see that glucosamine may be helpful as hubby is already on glucosamine-msm for the spinal herniation from his injury.

 

I am going to let my son read the Crohn's connection as he is mega cautious lately on me adding any supps to his plan. LOL my young adult is in charge of his own healthcare now

 

he is really in such a good place at present with his health in general, which we emphatically know is from his careful diet/supplement/low stress program. But to me the more anti-inflammatory/mucosal healing that can be found the better with any ulcerative GIT stuff, so hopefully he will consider adding it once he reads the info.

 

thanks again (((Kim)))

[kim]

I am just stopping by quickly as exhausted so wont post long. Thankful to see that glucosamine may be helpful as hubby is already on glucosamine-msm for the spinal herniation from his injury.

Cheri,

 

It sure sounds like you are dealing with a lot right now! I'm glad things are going so well for your son though.

 

I'm wondering if your husband has ever taken glucosamine-msm before? If you would let us know what effect if any, it has on any ts related behaviors, that would be great. Since the research on it's benefits for glaucoma seems light, it might also be wise to keep an eye out for any worsening in that dept. too tho.

 

When you get a chance, could you read this study? This is what is making me think that we might have a very important piece of information here.

 

http://www.researchcrossroads.com/index.ph...rant_id=3210354

 

I can pretty much verify that they are on to something! Can't speak much to the autism part, but most of us have seen a correlation in one way or another. Could very well be that there is more than on path to a problem with HS synthesis

 

http://www.researchcrossroads.com/index.ph...rant_id=3210354

 

caused by defective HS synthesis due to mutations of the GlcNAc/GIcA co-polymerase EXT1.

 

and

 

If our hypothesis proves correct, this project will pave a way toward a new direction of autism research.

 

We all know that these bony tumors are not a common findings, but defective heperan or sulfate or HS synthesis could be, it would seem.

[Chemar]

I'm wondering if your husband has ever taken glucosamine-msm before? If you would let us know what effect if any, it has on any ts related behaviors, that would be great. Since the research on it's benefits for glaucoma seems light, it might also be wise to keep an eye out for any worsening in that dept. too tho.

 

Hi Kim

 

it is kinda hard to say as he has been on the glucosamine-msm daily for about 3 months now (I take it too for arthritis)

the problem re trying to determine anything re its effect on his TS is that the doc's (against my advice and pleading and even angering the docs) had him on a clonidine they said it would help maintain his high blood pressure while reducing the pain plus the waxing of tics that the injury has triggered ...instead it induced psychosis ) and then he was put on a 6 day medrol steroid burst that caused a massive tic explosion (gee why am I not surprised ) and horrid hyper stuff. Hubby has been in such agonizing pain that he was willing to risk side effects for pain relief and sadly got the former in massive quantities with not much of the latter. Needless to say I am in major anti-meds/docs mode but at least hubby seems to now get it that just because docs and pharmas say that side effects are rare doesnt make it so!!! amazing isnt it as he has seen first hand what our son went thru, yet I guess he had to learn for himself. I am sooooooooooo thankful that my son and I held firm on the no steroids with TS back when the GI docs were telling us that only prednizone etc would help his Crohn's!! heh!! he sure proved them wrong and is doing way better than we could have hoped, considering how severe the crohn's was dx at colonoscopy in 2006..............

 

anyway, rant on meds/docs over

 

 

because of all that other stuff my hubby's tics etc have been elevated and so it will probably be a while for him to stabilize, so I really cant comment yet re the glucosamine-msm effect on TS

He is supposed to go for more testing on the glaucoma, but has been so ill from the meds and so much pain from the spinal injury coupled with the fact that the first two sessions of glaucoma testing left him feeling very weird for days after...

 

I did look at the research article, and tho I honestly dont know if my hubby or son have bony tumors, I can see where there may be merit in the research.

 

just as an aside, hubby now has a TENS Unit to alleviate the pain intensity and it seems to have calmed the flare up of his tics/OCD some............maybe its the endorphins?

 

"TENS" is the acronym for Transcutaneous Electrical Nerve Stimulation. A "TENS unit" is a pocket size, portable, battery-operated device that sends electrical impulses to certain parts of the body to block pain signals.The electrical currents produced are mild, but can prevent pain messages from being transmitted to the brain and may raise the level of endorphins (natural pain killers produced by the brain).

[kim]

Cheri,

 

I don't think the bony tumors are what is important in that study. It was only that someone linked the autistic traits in some people with these tumors. So, when they looked at what was different.....they found the defective HS synthesis due to mutations of the GlcNAc/GIcA co-polymerase.

I doubt that many people with TS or autism have these tumors (althou it sees we have two on this forum, with a possible 3rd). I think I can also see other problems discussed here that could result in problems with same end result.....problems with adequtely sulfated carbohydrate chains or GAGS.

 

GIcA is glucuronic acid

 

GlcNAc from wiki

 

http://en.wikipedia.org/wiki/N-Acetylglucosamine

 

GlcNAc is the monomeric unit of the polymer chitin, which forms the outer coverings of insects and crustaceans. GlcNAc is also of note in neurotransmission, where it is thought to be an atypical neurotransmitter functioning in nocioceptive (pain) pathways.

 

It has been proposed as a treatment for autoimmune diseases

 

All very interesting in light of some of what you just posted. Illness or injury can result in the shedding of these glucosaminoglycan chains, resulting in even less of what might have been in low supply to begin with.

 

I know you must be under an tremendous amt of stress right now Cheri. It sounds like your husband has been through a horrible time. I wasn't aware that he had been injured recently. I know this stuff sounds incredibley complicated. Maybe just sharing small bits of info on this subject at a time, will make it a little easier.

 

Remember, we don't have the multiple or the hereditary part of what is discussed in that study. Only one son has 1 bony tumor. Youngest son doesn't, yet has the gut problems and mild (for quite some time now) tics. I think the researchers are thinking that altered sulfur metabolism could be what would be important in future autism research, which would verify what Waring suspected quite a while back. This might be a genetic link to her research

[Chemar]

Hi Kim

yes I had noticed the deficiency/genetic and GlcNAc parts with much interest, again things I am hoping my son will start reading up on. I am so delighted to see him now researching stuff for himself. How far we have come from the struggles to get the supps in and the slurpees & Doritos out He basically structured this diet/supp/stress-coping plan himself and we havent seen a Crohn's flare in a long time and we know there has been ulceration and fistula healing, as well as that his inflammation markers are down (his current Crohn's treatment has DGL-liquorice root, slippery elm, boswellin/curcumin, white willow bark, garlic, ginger, turmeric supps+extra in diet and his multi in the form of a protein/multi vit /mineral formula shake. For his tics he has only the epsom tubs, and of course the benefit from the shake multi, plus flaxseed oil and flaxseeds in cooking, cereals, salads etc and fresh alaska wild salmon for more omega3 - he tics more with fishoil supplements so cant take it in that way. He is currently off all the natural antibiotic supp mix and maintaining well.

 

My dh has always had some skeletal issues related to an old injury, but seems to have ruptured the discs with herniation now from the jolt after somone smacked into our car with hubby at the wheel. it seems the herniation and hip rotation has now impacted his sciatic nerve and hence agonizing pain when he tries to stand/sit/move etc ): so it is hard for him to get around at all. Having tried the med route, and not being well or eager for surgery to repair the discs, he is trying the TENS and lidoderm patches with some relief.

 

The medrol relieved the nerve inflammation some but oh my goodness i cant begin to tell you the horrors of someone with TS on a corticosteroid It has been weeks since he had the medrol burst pac but he still cant sleep and has been in tic and TS-spectrum waxing mode, tho thankfully these last few days things are looking better, I think in part to the TENS unit and hopefully the glucosamine-msm too

[kim]

Cheri,

 

I feel so bad asking you to have the mental "wear with all" to deal with this whole topic right now, but I would like to touch on something here.

 

When looking at Crohn's and glaucoma and the abnormal collengen thing, which appears to possibly be related to a lack of heperan sulfate, I have to think of something that happened with oldest son.

 

First, I interpreted something wrong in my original post.

 

I quoted this

 

RGTAs are chemically substituted dextrans engineered to mimic the growth factor protecting effects of heparan sulphates

then made this remark

 

*I'm wondering if there was ever enough heparan sulfate to protect in some instances?

 

Well, they weren't saying that RGTA's were protecting heperan sulfate, they were saying that the RGTA's mimic the growth factor protecting effects of it. I would think that implies that there was not enough (any?) of it there to start with.

 

Now, what I was going to say about my son's experience has to do with what happened when he had that mole removed, which there probably was no good reason to do at the time. He got a staph infection and then developed a "birth mark" at the site. Looks like a rather large stain. Dr. said you can expect the area under it to thicken. Is this another example of overproduction of collegen, due to a lack of heparan sulfate? I had mentioned recently that I was looking at MSM as a way to provide sulfate to the boys system. I still have not done enough reseach to look for any down side to doing this. I have pretty much been spending time looking at ways that this might be important to other's as well.

 

IF these chains are important to protecting the gut lining, and we have a deficiency from the start, what are all the implications in that area alone? Seems profound.

Strep invading, suceptability to gastro disorders/infections, digestive issues, measles vaccine (?) leaky gut, inability to digest protein etc.

 

Thats why I loved this bit and am very curious as to what this is ; pentosan polysulphate (Elmiron)

 

http://www.ncbi.nlm.nih.gov/pubmed/1046566...Pubmed_RVDocSum

 

At present, it is embarrassing that ulcerative colitis (UC), Crohn's (CR) and interstitial cystitis (IC) are the cause of a great deal of morbidity and occasionally mortality, yet after intensive research, the etiology and effective treatment eludes us. The research in the past has focused extensively on inflammatory response in the mucosal lining, and biochemical, infective and immunological changes in the serum.

 

and when he talks about this I want to shout "right on brother!"

 

The basic tenet of a GAG deficiency hypothesis is that, as shown in Figure 1A, an intact GAG layer provides, firstly, a mechanical and electrostatic defence against penetration of infective agents, toxins, antigenic protein moieties, etc. and, secondly, the prevention of extravasation of body fluid components. A degraded GAG layer is the start of the disease cascade of the above group of illnesses

 

BTW I'm glad I didn't have my son take the prescription for the "steroid burst" that was prescribed for suspected poison ivy, based on what you just shared.

Also, thank you for the details of your sons supplements. I will be saving that info

 

It MUST be wonderful to see your son taking interest/control. Would love his take on any of this! Maybe it's time for a young/sharp mind to give this a go!

[Chemar]

another fly by post of info that I hope may help your research Kim

 

my son was in hospital back in 2001 because of a severe lower lip/chin injury/infection from a tic/OCD episode (now believed to have been induced by the haldol that he had only been on a few weeks)

 

anyway, he has a pretty thick scar from it still tho a herbal lotion recommended by our acupuncture physician really helped reduce the redness and prominence. I will dig out the info and post ingredients when I get a chance

[kim]

Cheri,

 

Thanks! Now I'm wondering if slathering any area prone to scar tissue build up with epsom salt or a transdermal MSM might be a good idea?

 

I guess I do have more reseach to do.

 

I also wonder if the "infection" part is involved. I haven't noticed any wounds on either of the boys looking like there was any problem, but the mole site did have an infection. The Dermatologist had put him on doxycycline for prevention. Later, I found out that that is one of the anti biotics, like zithromycin, that should not be taken within a couple of hours of calcium or magnesium (can't remember which is which right now) as it can bind and make the anti biotic less effective. I had told the dermatologist that he was on vitamins, even had them with me. For anyone reading who may be new to supplements, when they say tell your Dr. about any vits or minerals, herbal etc, don't rely on it, look it up ANY medications and possible interactions yourself.

[kim]

Just wanted to drop this here.

 

Bottom 2/3's of page mentions glaucoma/Chondroitin sulfate quite a bit

 

http://209.85.165.104/search?q=cache:X_JXX...;cd=9&gl=us

 

 

Eye drop vaccination for acute and chronic glaucoma: Morphological and functional evidence of neuroprotection.

 

Journal of molecular medicine 2005 Aug 12;83(11):904-16.

 

 

6. Rolls A,. Bakalash S., Schwartz M. A sulfated disaccharide derived from chondroitin sulfate proteoglycan protects against inflammation-associated neurodegeneration.

 

FASEB J Mar;20(3):547-9 Oct. 2005

 

 

7. Bakalash S*., Rolls A*., Lider O., Schwartz M.

 

Chondroitin sulfate proteoglycan-derived disaccharides as a therapeutic compound for Glaucoma. Accepted IOVS Oct 2005.* equal contribution

 

 

8. Ben Simon, G.*,Bakalash, S.*, Aloni, E., Rosner, M., Wheeler, L., Schwartz, M. 2004. (*equal contribution) A rat model for acute glaucoma: Immune modulation as a therapeutic strategy. American Journal Ophthalmology 2006 Jun; 141(6):1105-11.

 

 

9. Bakalash S, Rolls A, Lider O, Schwartz M. 2007 Mar. Chondroitin sulfate-derived disaccharide protects retinal cells from elevated intraocular pressure in aged and immunocompromised rats. Invest Ophthalmol Vis Sci.;48(3):1181-90.

[kim]

Cheri,

 

In addition to above post.....

Again, I wasn't looking for this (was looking for something else). Thought I would post it, so you can take a look when you get a chance. If there is anyway this mutation could be important to your family, i wouldn't want to let it slip by. I didn't read this article throughly at all but Faith made me realize that we didn't have a hereditary disorder regarding heperan sulfate. I'm suspecting the CBS or MTHFR mutation may be more likely involved (the hereditary component) which may have been triggered by "events" that manifested in a similar end results. As always, I totally reserve the right to say I was wrong!

[kim]

Cheri again!

 

I'm going to take this one step further and I hesitate to do this because this info may not be accurate and certainly not complete. This is just my very limited understanding and what I was looking for to begin with. My understanding....... If you have a homozygous (two copies --) mutation in either of these genes it will result in more serious consequences. If you have only one (-) copy or a heterozyguos mutation, the evidence is lighter on a problem with converting homocysein to cystein (from mainstream artilces, it doesn't look like a problem at all). I wasn't aware that MTHFR caused this same problem (as CBS) of converting homocystein to cystein, but ran across something this weekend, that looked like it did. I don't know if they were talking about -- or +- though. Anyway, if you have a problem with homo, to cystein, it looked to me like you didn't want to supplement with methionine or SamE because it could cause homocystein levels to rise, which apears to have an effect on vessel health. Cheri, this is why I hesitate to post this. I don't want to scare anyone away from something that could be very beneficial, but if there is any possibility that I have this right , then it is something that people need to be aware of too (maybe more important in long term use?). I guess it wouldn't apply at all if there is no mutation, or if it relates to people with a homozygous mutation only, I just don't know. I guess that's why I keep hoping someone else will do some research on some of this and clarify. My time is getting so limited. I have about worn out my families tolerance.

[Chemar]

Hi Kim

 

as you know I glaze over trying to understand biochemistry and the nitty gritty of genetics..... so honestly confess I dont fully understand what you are saying

but one thing I know for sure..........

Methionine helps my son VERY much (and my hubby too....hubby has started taking the samE form and it helps both OCD/mood as well as brings pain relief for him) Neither of them have any increased tics fromit....quite the opposite...

 

so where that may or may not fit into the above I dont know, but for them it definitely and without any doubt in my mind works and does not bring any effects that I am aware of!!

 

ps the form of methionine that my son now takes is seleno-methionine

[kim]

Cheri,

 

I have had a bottle of SamE sitting on my cupboard for a couple of months. I have no doubt about it's ability to help. The possible problem I see, is where eleveated levels of homocysteine come in. You could get the benefits because you are supplementing something that is lacking at the top, but have an underlying problem worsening that wouldn't be apparent. I think a simple blood test to check homosysteine levels would be all that might be necessary.