posted 05-24-2003 11:58 AM            

1. By exercise? What kind? How often? When?
2. With calcium (w magnesium, D minerals)...?
3. How much per day?
4. Taken when during the day?
5. How many at a time?
6. What other supplements?
7. Phospherous? Vit K? SAme? DHEA?
8. Multi-vitamin - with which vits dominating?
9. What do you eat that helps reverse bone loss?
10. What do you drink that helps reverse bone loss?
(how much, how often for each)

What exactly did you take? And do? Any information may be useful.

I controlled my Crohn's without drugs (been in remission for 3 years) - everyone one said I couldn't - and I am going make a good atempt to reverse my bone loss. This is war...
O

posted 05-26-2003 11:22 AM            

Very discouraging if that is the case.

Maybe the questions seem daunting, but one could answer just a few and help others.

Some are very basic, but maybe important. Like I don't think one should take one's calcium the same time as one's multi-vitamin.

posted 05-27-2003 05:18 PM            

I'd be happy to hear someone has managed to maintain their bone loss without losing more by alternative means. There must be someone.

I am investigating myself. Doing major research into alternative options. Onto Vitamin K at the moment. Think I'm going to take 10 mg/day of that to start. And eat more lettuce, since I can't tolerate
too many dark green veggies because of my stomach probs.

Read the protocol from ******* on Osteoporosis. I don't think it is up to date because they mention hormone therapy, but there is some interesting info there.
Good luck to you.
I don't think we are alone in not wanting to take these meds with their short and probably long term side fx.
O

posted 05-30-2003 10:14 AM            

For starters, I don't think calcium is enough on its own, even with magnesium and D, etc.. One must absorb enough of whatever calcium one is taking.
And there are calciums and calciums. I am taking a very sophisticated one, but don't think it was enough, or I am not personally absorbing it.

Looking for a test for that. Although my blood tests say I have normal levels of calcium, the insurance's
labs are not always as accurate as they might be.)

I have changed the way I take calcium. I now take it after lunch, tea and dinner, instead of the first 2 in the morning. I might even up to more a day. One should take the final 2 just before bed but that makes my stomach gurgle too much!

I have added dark green lettuce, the curly one, after lunch and dinner, twice a day, am trying to get more sun, at least 15 minutes a day, also going to research
an exercise program.

And I have, for now, added Vitamin K once a day, 10 mg.
(NOT to be taken if you are taking coumadin or some other type of anticoagulant medication.)

I am going to look into taking phospherous, maybe
MegaSoy (whatever that is), possibly DHEA (but that necessitates regular blood tests to check on certain
levels and my doctor doesn't understand about all this,
she just wants me on Actonel once a week, knows only drugs, but not their side fx!!!) I may have to change her for a doctor with a more open mind to all the alternative options with less side fx - if I can find one on my insurance, no easy matter.

Still researching. I can't post links so you can research the same and make up your own minds because this board doesn't like allow links.

Will keep the board informed.
Good luck to everyone.
O

posted 06-28-2003 07:23 AM            

Regarding your Crones - I just saw this on a thread for CFIDS at this Healtboard and it is supposed to address Crones and other autoimmune conditions as well:

"Has anyone tried Aloe Mucilaginous Polysaccharide by M o l o c u r e? I have had good results with high doses of Aloe Vera in the past and think a more concentrated dose of AMP might have a more beneficial effect"

I went to the web site and it looks interesting. I have tried aloe vera in the past with good results but this is a very concentrated form which also deals with digestive problems.

Sorry all for posting this at the osteo site, but didn't know how else to get the info. to OppOnn.

posted 06-29-2003 08:48 PM            

First, though, Brit 1 - interesting about the herbs. Can one get nettles and Oatstraw in America anywhere?
Has everyone you done wiht herbs and minerals actually maintained your bones or reversed the loss? Have you had a bone density test since you started doing this?
Let us know if you have, the results, and when you do, what the results are. Very interested.

marciakeeney: what weight training, exactly do you do?
Which calcium do you take, when, how much? I'd love to know that since you have had some results. These doctors, giving us different scans all the time, hard to compare, you are right. I've had 3 different ones!
How much sun exposure? What kind? Interested to know the results next year. Do keep us informed.

peregrine: Thank you so much for Crohn's info.
I will look it up. I have, though, controlled my
Crohn's by an elimination diet which I designed for myself - taking out foods and drinks which I now consider my enemies by trial and error over 6 months,
then fine-tuning my lists. Been in remission for over
3 years now because I still don't risk eating no-no foods, and I take 2 digestive enzymes before my main
meal, which I think helps my success.

Gabriella. To each his own. One must do what one feels comfortable doing. But do think of all the drugs that have also done harm over the long term, even with FDA approval. Just because one's doctor recommends something, doesn't mean one has to follow that advice, not without a 2nd opinion at least. That's my way.
I like being proactive with my body, because I care about it more than any doctor does. See my new post on my new rheuamatologist.
O

posted 06-30-2003 11:23 AM            

OppOnn - Have you decided what to be taking yet?

posted 06-30-2003 04:56 PM            

So, I am still researching, but am taking, around 2,000 of calcium (with Vit D and magnesium and other minerals) - more. Lunch, dinner, sometimes mid-afternoon with a snack, dinner, usually just before bed, which is supposed to be the best time. Bedtime
dose is a Liquid Calcium and Magensium - one needs one tablespoon for 1200 mgs, so if I forget to take any during the day, I take more a night, or less, depending on how much I managed during the day.

I am also taking a multi-vit (which has 400 IU D and 200 mgs calcium) and trying to get more sun every day.

Also Vitamin K (10 mgs but want to up to 20 or more when I have another doctor's visit and can check.) Do NOT take this if you are taking anticogulant drugs.
I have posted here on Vit K, so do look it up.

Also, going to take Omega Fish Oils. Other say progesterone cream (the health food kind, not the drug)
is useful. And I take a Melatonin before bed, 3 mgs.
Also useful for jet lag!

And I am upping my exercises - going to do the treadmill when I finish procrastinating! After a little holiday end of July, because I have this bad back I don't want to risk putting out before holiday,
uh, vacation.

Going to take more, when I return in August.
O

posted 07-03-2003 10:38 AM            

There are people on this board who...have had success without drugs. Marciakeeney's post, above on this thread, says she has. Also, there's a whole thread, which I will bump to the top called, I think (?) You Don't Need Fosomax - and that tells of some successes.
Last November. And I can't seem to wake up any of the
success stories now, in July, but I have hopes they are so successful they don't feel the need to keep coming back to this osteo board.

Also, I have to ask you. You do DEXA's and have heard of no successes. How many do you do a day? Do you do them for a busy hospital? Or a clinic or doctor, who maybe, perhaps, only recommends Fosomax? Are you in a big city?

And do you take vitamins, are you interested in complimentary options or do you only take drugs recommended by the FDA?

posted 07-03-2003 04:18 PM            

I, like you, came to these boards looking for answers. What I have found is sometimes heartening and at other times, the info that I read sounds downright dangerous. I hope that everyone realizes that those of us on this board are patients first and don't take anyone's word, mine included, as being gospel. Since my hospitalization with the hypercalcemia, I swear I will never take anything that's not been approved by the FDA again. I was near death, or so they told me, and that's coming from someone who should have known better. Should I develop side effects from the fosamax in the future, I'll take another route and ask advice from my doctor before I do it. He, after all, is the one that got me out of this mess.

posted 07-03-2003 04:39 PM            

I have Crohn's and can't digest my calcium I take during the day. Which are, in fact, slim and easy to swallow but don't seem to work late at night for me, which I understand is the best time to take some.

I have found the Liquid Calcium and Magnesium by Innovative Natural Foods is very easy to digest. It is 1 tablespoon for 1,200 mgs calcium and the taste is
pretty good. It is available at Whole Foods and other places from their website (which will get deleted if I mention it here, alas!) Expensive, I think, but I am only taking a little at night. The price does seem to vary though and if I could, I'd give a discount phone number where it might be even less expensive. But I guess that would get deleted here, too.

posted 07-21-2003 12:03 PM            

Someone posted on another board that excessive calcium can actually leech magnesium from the body.

Just thought I'd pass that along.

posted 07-21-2003 04:38 PM            

All the more reason I'm going to insist on having that 24 hour urine calcium test in August.