Bone density in bedridden patient

Cheesus

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Gijs

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I don't think that you can handle this problem with supplements and exercise. It is also a problem of the disease itself. Especially if we have a metabolic problem and low energy.
 

Alvin2

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There are many studies with Vitamin K2, though most are for age related osteoporosis/arterial plaque prevention. Since it prevents plaque deposits that suggests it would work even for inactivity caused bone loss, but thats only supposition. Spend some time on google to learn more, and also check out vitamink2.org
Just to save you some time for maximum bone effect you need at least about 360mcg of MK7 or 1000mcg of MK4. Its likely MK4 does more then MK7 but is more costly and needs a higher dose. My non medical but highly researched opinion is that 2mg of MK4 would be ideal, if you can get it. When i had money i used Thorne MK4 drops, 2 drops a day on a meal with fat/protein (eggs, meat, peanut butter etc). If you have wisdom teeth that are unerupted it will push on them which is painful if your jaw has no room for them to come out (its actually what causes wisdom teeth to come out in normal humans but we are designed to have this vitamin all our lives including our growth years which would have had no pain). I'm not sure if MK7 will do this or not. If you have had your wisdom teeth removed or they have already come out (rare) or your jaw has the space then your fine.

It also has many other effects that are under research, unspecified immune effects, is found in the pancreas, kidneys and brain but its roles there are unknown (though its required for sphingolipid production which is interesting given Dr Davis mentioning of sphingolipid abnormalities, though the relationship is undetermined) and so forth.

I have not found it to have a big effect on my ME/CFS but there is no evidence it has any direct connection to our symptoms so thats not too surprising (though of course i wish it was a ME/CFS cure)
 
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Wolfiness

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All bed bound people should be assessed for bone density risk and advised on options for measurement and treatment. This is considered mandatory for all those with joint disease, including young people with juvenile arthritis. NHS services absolutely have a duty to provide assessment and management for all bed bound ME patients.
But if I can't get to hospital and be scanned is measurement and treatment just guesswork? Am I at also risk of kidney stones if I oversupplement calcium?
 

Gingergrrl

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Yes, it can be tested with a dexa scan, but it is pretty high radiation. After having a couple of them and realizing that I did have some bone loss, I decided to treat it in the best way I could and avoid further radiation. I am unwilling to take the prescription medications on offer and that is what the docs would want me to do if they saw more bone loss.

I agree w/Sushi that the DEXA scan (which I declined) is very high radiation and even if it shows bone loss, the meds prescribed can be quite dangerous (even for healthy people). One of my grandmothers had severe osteoporosis so I am probably at risk but b/c I require lung cat scans once a year (for an autoantibody that puts me at risk of lung cancer), I am not willing to have unnecessary radiation from a bone scan (vs. if the lung cat scan found cancer this would be crucial to know early)! I try to move around as much as possible (given I still have to use wheelchair) and eat food w/calcium and take daily Vit D. Am unclear about the other supplements but want to learn more from this thread and will be following it!
 

Jonathan Edwards

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But if I can't get to hospital and be scanned is measurement and treatment just guesswork? Am I at also risk of kidney stones if I oversupplement calcium?

Assessing risk of osteopenia is a complicated mathematical skill but even where there is no specific scan information it is possible to judge probability of problems. Considering the major industry that has sprung up around assessing osteoporosis I see no good reason why all ME patients should not have an assessment based on the best information available.

DEXA scans are not the only method. Ultrasound, which has no risk from radiation, has been used quite extensively. It ought to be possible to bring ultrasound machines to patients homes if necessary.

I do not think the radiation dose from a DEXA scan is actually that significant. In comparison to a CT scan or barium meal it is tiny. But it is still radiation.
 

anniekim

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But if I can't get to hospital and be scanned is measurement and treatment just guesswork? Am I at also risk of kidney stones if I oversupplement calcium?

I have been bedridden, apart from transferring on to my commode by my bed, for four and half years and am concerned about bone loss. Like you, I am too ill to get to hospital and have a scan and have the same question.
 

anniekim

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There are many studies with Vitamin K2, though most are for age related osteoporosis/arterial plaque prevention. Since it prevents plaque deposits that suggests it would work even for inactivity caused bone loss, but thats only supposition. Spend some time on google to learn more, and also check out vitamink2.org
Just to save you some time for maximum bone effect you need at least about 360mcg of MK7 or 1000mcg of MK4. Its likely MK4 does more then MK7 but is more costly and needs a higher dose. My non medical but highly researched opinion is that 2mg of MK4 would be ideal, if you can get it. When i had money i used Thorne MK4 drops, 2 drops a day on a meal with fat/protein (eggs, meat, peanut butter etc). If you have wisdom teeth that are unerupted it will push on them which is painful if your jaw has no room for them to come out (its actually what causes wisdom teeth to come out in normal humans but we are designed to have this vitamin all our lives including our growth years which would have had no pain). I'm not sure if MK7 will do this or not. If you have had your wisdom teeth removed or they have already come out (rare) or your jaw has the space then your fine.

It also has many other effects that are under research, unspecified immune effects, is found in the pancreas, kidneys and brain but its roles there are unknown (though its required for sphingolipid production which is interesting given Dr Davis mentioning of sphingolipid abnormalities, though the relationship is undetermined) and so forth.

I have not found it to have a big effect on my ME/CFS but there is no evidence it has any direct connection to our symptoms so thats not too surprising (though of course i wish it was a ME/CFS cure)

Thanks for this @Alvin2 The vit d supp I take with MK7 is only 15mcg mk7 so it sounds that is not nearly enough?
 

Cheesus

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I have been bedridden, apart from transferring on to my commode by my bed, for four and half years and am concerned about bone loss. Like you, I am too ill to get to hospital and have a scan and have the same question.

I am in this exact situation, right down to the commode (I will not be sorry to see the back of that thing). I can't get to hospital either.
 

Wolfiness

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I've been bedbound since 2001. I'm going to reach the point soon where I can't communicate either by speech or typing, and I've neglected to put in place any care instructions or living will or anything like that, so that's my priority. Then if possible the GP.
I presume sooner or later I will fracture something or other just by turning over in bed. Then things will get really interesting.
 
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Alvin2

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I've been bedbound since 2001. I'm going to reach the point soon where I can't communicate either by speech or typing, and I've neglected to put in place any care instructions or living will or anything like that, so that's my priority. I presume sooner or later I will fracture something or other just by turning over I bed. Then things will get really interesting.
I'm so sorry to hear this, please try 360mcg of MK7 a day if you can get it
 

perrier

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Assessing risk of osteopenia is a complicated mathematical skill but even where there is no specific scan information it is possible to judge probability of problems. Considering the major industry that has sprung up around assessing osteoporosis I see no good reason why all ME patients should not have an assessment based on the best information available.

DEXA scans are not the only method. Ultrasound, which has no risk from radiation, has been used quite extensively. It ought to be possible to bring ultrasound machines to patients homes if necessary.

I do not think the radiation dose from a DEXA scan is actually that significant. In comparison to a CT scan or barium meal it is tiny. But it is still radiation.
Thank you. My adult daughter had this Dexa scan And mild osteoporosis was found. The GP wrote a referral for an endocrinologist indicating the latter would presumably inject a medication for bone loss. But here in the true north strong and free that's a wait of a year. Do you think Dr Edwards this injection is safe and recommended.
And what supplements would you recommend in the meantime? Preferably drops,as pills are hard on her gut. Thank you.
 

anniekim

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@Alvin2 thank you. Do you think mk4 is better than mk7? I have been looking on iherb. Also I see you say if taking M4 form you recommend 2mg but I am seeing doses of 15 -45mg daily recommended. Do u think that is not necessary?

Sorry @Cheesus you too are so debilitated. I realise I wrote commode but I actually use a chemical toilet rather than a commode, less smelly!

Am so sorry too @Wolfiness you have been so desperately ill for so long
 

anniekim

Senior Member
Messages
779
Location
U.K
Assessing risk of osteopenia is a complicated mathematical skill but even where there is no specific scan information it is possible to judge probability of problems. Considering the major industry that has sprung up around assessing osteoporosis I see no good reason why all ME patients should not have an assessment based on the best information available.

DEXA scans are not the only method. Ultrasound, which has no risk from radiation, has been used quite extensively. It ought to be possible to bring ultrasound machines to patients homes if necessary.

I do not think the radiation dose from a DEXA scan is actually that significant. In comparison to a CT scan or barium meal it is tiny. But it is still radiation.

It's helpful to know an ultrasound could be used and brought to the home; however,I can't see any medical professionals I know agreeing to this. I have tried to organise a smear test done at home and have come up against a brick wall.
 

Alvin2

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@Alvin2 thank you. Do you think mk4 is better than mk7? I have been looking on iherb. Also I see you say if taking M4 form you recommend 2mg but I am seeing doses of 15 -45mg daily recommended. Do u think that is not necessary?
Keep in mind i'm no medical professional.
MK4 has been found to be the predominant form in animal tissues and can be made by most animals (when eating a free range diet) except humans. That combined with the research showing its many actions on the body suggests its the ideal form. Nothing wrong with 45mg but fully activating osteocalcin only requires 900mcg (0.9mg), and the other needs in the human body need some too, so 2mg is probably enough, 5mg may be better but 45mg is likely more then needed. No harm taking extra that i know of, just in the pocketbook.
MK7 is popular because its found in japanese fermented soy. If that starter bacteria was not invented and not cheap we would have no research on MK7. I suspect its osteocalcin actions are incidental and its likely to not have the same immune, brain, kidney, pancreas and other effects found in MK4.

Lets keep in mind any form of Vitamin K2 will take several years to completely rebuild lost bone mass, so don't be disappointed if a few months does not yield results, though as i said i know of no research related to being bedridden, only age related osteoporosis (and steroid induced osteoporosis), though i suspect it will still work but i have no evidence, as i mentioned earlier.
 
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