severe osteoporosis

Cindi

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I have low stomach acid problem and can not digest animal protein well. I used Calcium Microcrystalline Hydroxyapatite for a while but than I developed some painful,swollen,red joints. I am wondering if MCHA might have caused this as it is of animal origin. Anyone has any insight on this?Thanks
 
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(...) any of the long term sufferers have severe osteoporosis problem. (...)


Hello Cindy!
I have 57 years. I have ME/CFS by 27 years.
In 2009 I made bone densitometry, they found "surprisingly severe osteoporosis, not compatible with age".
I redid the bone densitometry exam last year, and the situation has worsened.
The medical report strongly suggests to "investigate all the possibilities for secondary osteoporosis". Investigation performed only in part.
(In my medical landscape, nobody knows the ME / CFS. Most have heard about CFS, and believe it is a unidentified mental illness.
The most documented, are convinced that improves with exercise, because this say the studies . One of my doctors decided that ME does not exist, because its reference sites given hundreds studies on CFS and very few of ME, therefore he concluded that: CFS exists, and ME is not relevant, because it does not concern studies ...)
With administration of vitamin D have digestive problems.
They tried with an injection of bisfonoati (the dose to be taken every 3 months): 5 days of hospitalization and wheelchair, because I could not move due to pain, in addition strong nausea. Obviously the experiment was not repeated.
Now give me Prolia ... I have only 1 puncture, to be repeated every 6 months. Read nausea during 2 months ...
I do not know the benefits. I noticed a slight improvement of certain pains.
...
Affaire à suivre ...


However, even I'm interested to know how many of the long term sufferers have severe osteoporosis problem.
In many websites on ME / CFS, I found osteoporosis among the complications of the disease.
But: in the majority of sites, it seems that the author has done copy / paste from another source.
I would be happy if anyone knows serious studies on the relationship between ME / CFS and osteoporosis. Thanks to those who have some links on the argument to recommend.
Thanks :)
 

Sherlock

Boswellia for lungs and MC stabllizing
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However, even I'm interested to know how many of the long term sufferers have severe osteoporosis problem.
In many websites on ME / CFS, I found osteoporosis among the complications of the disease.
But: in the majority of sites, it seems that the author has done copy / paste from another source.
I would be happy if anyone knows serious studies on the relationship between ME / CFS and osteoporosis. Thanks to those who have some links on the argument to recommend.
Thanks :)
Hi, there is the histamine association:
http://www.ncbi.nlm.nih.gov/pubmed/16887466
The role of mast cells in osteoporosis.
2006
CONCLUSIONS:

Mast cells appear to be relevant in the pathogenesis of bone turnover. Their deficiency has been associated with low remodeling states, while their excess is associated with accelerated bone loss. Even their byproducts are responsible for increased bone resorption. Inhibiting mast cells and/or their products many be a novel therapy for treating osteoporosis in the future.
 

sianrecovery

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I also have osteoporosis, as did my mother, who also had ME and a kidney disorder I have. Have your docs done a 24 hour urine to see if you are excreting more than you should be, or any bloods to check calcium levels, or parathyroid hormone? You might also want to look at a website called parathyroid.com, and Dr Myhill's website (just google drmyhill) has a useful short section on osteoporosis. I don't know what works ultimately, but I also have used strontium, K2/D3, magnesium etc etc.
I would expect to find a large cohort of us do have just as a silent adjunct to our condition - because it indicates apart from anything else, metabolic dysfunction, and a lack of good healing and repair mechanisms.
 

ukxmrv

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Doesn't work for my family Irene. My Mother went from being able to ride her bike and go to the gym, to needing a hip replacement very quickly. So did her other siblings. No amount of weight bearing exercise helped them.
 

Creekee

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I also have osteoporosis, as did my mother, who also had ME and a kidney disorder I have. Have your docs done a 24 hour urine to see if you are excreting more than you should be, or any bloods to check calcium levels, or parathyroid hormone? You might also want to look at a website called parathyroid.com, and Dr Myhill's website (just google drmyhill) has a useful short section on osteoporosis. I don't know what works ultimately, but I also have used strontium, K2/D3, magnesium etc etc.
I would expect to find a large cohort of us do have just as a silent adjunct to our condition - because it indicates apart from anything else, metabolic dysfunction, and a lack of good healing and repair mechanisms.

What are the implications of bone loss with high serum calcium levels? No evidence of parathyroid problems.

Thanks for all the good direction!
 
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Hi Cindi,

Sorry to hear about your severe osteoporosis problem.I have skipped through the posts here so i hope I'm not repeating something.Have you ruled out parathyroid disease?I have had severe osteoporosis too.Prior to having it confirmed I had osteopenia.However no doctor mentioned Parathyroid disease.I found out about that on the web.Have a look at parathyroid.com.It is a great site and provides a lot of information on osteoporosis.Dr Norman put me on Calcium Citracal.I believe that calcium in that form is easily absorbed.You can get them at Costco or at Walgreens if you live in the USA.If you have parathyroid disease then it is important not to take the calcium tabs until you have had the operation.(see site mentioned above).I had my illness about 12 years(or more)before it was finally diagnosed.Earlier diagnosis is much better for the patient.
 

maryb

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I had the results of a nutrahacker report which contra-indicated taking calcium as a supplement, I've been trying to juice kale amongst other things and eat a yoghurt or two despite being intolerant of casein. Its a bind for those of us in this predicament. High histamine is definitely driving my osteporosis. I've stopped taking the daily Benadryl though think it was making me feel worse than I already did. Answers anyone??
 

Sherlock

Boswellia for lungs and MC stabllizing
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I had the results of a nutrahacker report which contra-indicated taking calcium as a supplement, I've been trying to juice kale amongst other things and eat a yoghurt or two despite being intolerant of casein. Its a bind for those of us in this predicament. High histamine is definitely driving my osteporosis. I've stopped taking the daily Benadryl though think it was making me feel worse than I already did. Answers anyone??
Maybe a blocker isn't effective against osteo anyway, and a mast cell stabilizer like quercetin would be effective.

Do you flush a great deal from niacin, Mary?
 

alex3619

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Too much of what might be discussed on this topic is speculative, not least for the reason we still do not understand ME. Major hormone changes in ME may cause problems we cannot foresee yet (and here I am primarily talking about cytokines etc.).

I am aware that some very long term bed bound patients get severe osteoporosis, but this is an expected outcome from many years of bedrest. What I don't know is if this progresses at the same rate due to bed rest as in people without ME. I suspect we have a bigger issue. Yet we don't often see this story raised. Is there a subgroup?

We run into problems with treatments for these things in part because studies are done on patients with no medical complications, and problems that arise from our other issues may cause serious issues on particular treatments ... this applies to many treatments, not just those for osteoporosis.
 

maryb

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@Sherlock
quercetin is also on my contra-indicated list too:(
I struggle with oral stuff including niacin, just trying a reservatol patch..is it hocus pocus who know, its for the desperate anyhow that's for sure:)
 

Sherlock

Boswellia for lungs and MC stabllizing
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@Sherlock
quercetin is also on my contra-indicated list too:(
I struggle with oral stuff including niacin, just trying a reservatol patch..is it hocus pocus who know, its for the desperate anyhow that's for sure:)
That must be rough, Mary, being limited like that. It's bad enough trying things that have no effect and are a waste of time and money. It must be much worse not even being able to try.

Well, good wishes to you - I hope something works out.
 
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Hello everyone!
Two years later, maybe it is fair to give an update.
I have the pear-shaped body. I have cellulite on my legs since adolescence. I never had cellulite on abdomen and arms. So, choosing the right clothes, I could cheat well. ;)
At the beginning of 2013 I made one, single, puncture of Prolia (denosumab).
In addition to the effects mentioned above, in the first year I was filled with cellulite on the arms and abdomen. wow! I was lacking! :(
But the thing that worries me most, is that since then, now they are 2 years old, I'm getting worse and worse (ME / CFS I mean).
Clearly, it can be any cause, but no one knows what happens to me. And I have a doubt, strong, on Prolia.
Possible that a single sting can create this disaster, so in the long term?
 
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Sorry! Forgot: after one and a half years from the Prolia, the aggravation of osteoporosis is slowed down: instead of the usual point more each year, I had one more point of gravity in two years.
curious because a cuase of worsening general have been much longer in bed! maybe not the absence of movement that causes osteoporosis in ME / CFS ... (?)
 
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Thanks Sherlock! :)
Of course not ..!
I had read something about ... But I do not remember where.
Kindly, have you from this a serious and comprehensive link to offer me?
I have to go to my doctor soon, and do not have much time right for research. If you can make me a great pleasure! Thank You!

PS: Czech...? referring Czech Republic?
 

Sherlock

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I had read something about ... But I do not remember where.
Kindly, have you from this a serious and comprehensive link to offer me?
I have to go to my doctor soon, and do not have much time right for research.
Hi, KIO. If you want to learn for yourself, I suggest the interview with researcher Vermeer:

I'm not a fan of Mercola (who does the interview), but he does a good interview in this case. It is in 10 short parts.

If you instead want something to take to your doctor, I don't really know yet of a great article to print.

By the way, I can understand your automatic translator very well :)