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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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severe osteoporosis

Discussion in 'General ME/CFS Discussion' started by Cindi, Apr 13, 2013.

  1. Cindi

    Cindi Senior Member

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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
     
  2. Cindi

    Cindi Senior Member

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  3. KIO

    KIO

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    Lugano - Switzerland


    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 :)
     
  4. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Czechosherlockia, USA
    Hi, there is the histamine association:
    http://www.ncbi.nlm.nih.gov/pubmed/16887466
    The role of mast cells in osteoporosis.
    2006
     
    camas likes this.
  5. sianrecovery

    sianrecovery Senior Member

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    Manchester UK
    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.
     
  6. IreneF

    IreneF Senior Member

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    I think osteoporosis is a complication because we are so sedentary. Weight-bearing exercise is what builds and maintains bones.
     
  7. ukxmrv

    ukxmrv Senior Member

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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.
     
  8. Creekee

    Creekee Senior Member

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    Arizona

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

    Thanks for all the good direction!
     
  9. Abha

    Abha Abha

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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.
     
  10. maryb

    maryb iherb code TAK122

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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??
     
  11. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Czechosherlockia, USA
    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?
     
  12. alex3619

    alex3619 Senior Member

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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.
     
  13. maryb

    maryb iherb code TAK122

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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:)
     
  14. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Czechosherlockia, USA
    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.
     
    maryb likes this.

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