I went to a new dentist recently and he mentioned I should start chewing xylitol gum to stimulate saliva-my mouth is dry. Well, I remembered the discussion here. I checked back and it was Pika B. I know that people here mentioned it being good for bones. Can someone tell me how it is helpful for our bones and how much to have a day for the bone benefit?
At the health food store I saw the xylitol in a gum, a hard mint and in a granulated form. So how are people here taking it?

I'm chewing the gum, I just bought some today but only because I like chewing gum. I'm glad to know it's good for the bones also.

...Can someone tell me how it is helpful for our bones and how much to have a day for the bone benefit?
At the health food store I saw the xylitol in a gum, a hard mint and in a granulated form. So how are people here taking it?
There are many studies in rats which show improved bone density and structure after taking xylitol. For a few of them, go to www.pubmed.gov and search for any of the following articles: 7750030 11782878 10089228 7816005

I chew around 8-10 pieces of Xylichew, every other day, scattered throughout the day.

Based on the rat studies, an osteo-therapeutic dose for humans might be about 40 grams of xylitol per day, which is quite a lot more than I take. (Two pieces of Xylichew only has about 1.5 grams of xylitol.) Too much can easily cause diarrhea, so a person would need to gradually find out what dose can be tolerated. I've found that it's best to chew the gum after eating rather than on an empty stomach.

Hello...i have a bag of zylitol that i use to sweeten tea and coffee. After reading how much it takes to make a difference in our bones i decided to use it as a healthy alternative to splenda or equal and if its doing my bones some good then thats an extra bonus. I don't think it taste as good, but can live with that. Some trident gum is made with zylitol too, since it is also good for the teeth. take care...phyllis

PikaB-I am wondering if it is ok to ask you how you found out about xylitol? You seem to have a number of really great ideas that take me awhile to catch on to and I think why didn't I look into that when Pika B first mentioned it and get on with it then. I had read what you had said about xylitol earlier but then focused on other things that were discussed in that post-like your dexa results and dexa machine variances and etc. I was curious enough about the xylitol to ask what it was and just left it at that. But, now that the dentist is recommending it for oral health and then coupled with the osteo benefit, I am going to see how it works for me. But, as I said earlier-how did you learn about xylitol and decide to pursue it?
It is that old saying give a person a fish and they eat a meal, teach a person to fish and they can feed themselves for life. So, in a way I am trying to get at your process for finding these things (like the unipedal standing, and you were onto the weights on your shoulders pretty early , before we started talking vests).

Phylwil-so with the granulated, how much are you using a day?And, could I ask whether you recall where you read about xylitol and the effect of xylitol on bones? You too seem way ahead of the curve on what you have put together to help your bones.

Both of you are excellent mentors/colleagues and I want to let you both know how much you have helped me and I am sure so many others as well . THANK YOU.

How did I find out? Danged if I can remember. I know that over a decade ago I had read that xylitol gum was good for preventing cavities. And in 2005 there was a lot of discussion (on a different discussion group) about xylitol being good for bones, and sources were cited. I really can't remember, but there's a good chance that the stuff I mention crossed my path originally from: (a) other discussion groups; (b) news articles and alerts; (c) pubmed searches.

Hi OB...like PikaB i learned about it on the boards and also from doing reading on my own. If i see somethings that interest me i look for more info about it. I only use it to sweeten tea or coffee...maybe 2-4 teaspoons and thats not everyday...i also use stevia to sweeten my hot indulgenses and sometimes equal. I am far from doing all the right things, but like to think what i do do is helping.

Thanks for your kind words. I've always been a walker and exerciser and now ith osteo i learned to add extra to what i already did. I think getting bored easy helps too..it keeps me thinking of new ways to do the same things. As far as the other things go i read and take what i want from each persons idea of what we should do. take care..phyllis

Hi All: I use the xylitol toothpaste... I don't think it's doing anything for my bones, but it does help give you healthy gums. It's the only toothpaste I've seen that is suppose to prevent gum problems.

I heard about this stuff on other boards, research, and probably all the places Pika and Phyllis read it.:wave:

DB-Thanks for piping up about the toothpaste. Are you doing the xylitol gum or mints ? Because of various dental work I am afraid of the gum but I am using the mints.They are yum and I hope they are doing something for my gums .I sure hope that you are doing better!I hope your pt is paying off!! Once again, thank you for the candle and other stuff :)- I think it must be working still. My new pcp has been able to get me into THE bone expert. I am not putting her name because I just don't like to put too much i.d. info. on the net these days. I had just thought it was an impossiblity-turns out I just needed someone to really go to bat for me. My new pcp said she would be in my corner and she was true to her word.Maybe I can get to the bottom of the spine mystery with the really significant loss at L-4..Appt. is early in June,though I am wait listed too so could be sooner. This has put a little wind in my sails.A few minutes ago I got a call back from the docs office, due to schedule mix up-something has opened up in mid May. Hooray!

Hi Osteo... I'm glad you pcp is working out, hopefully she'll be able to find a solution to all the different issues and spearhead a solution.

I can't find the xylitol mints or gum anywhere. My local vitamin store has the toothpaste, but not the gum or mints.

Your very welcome on the aroma therapy; all I did was use the differing scents that are for destressing (lavendar) lymph probs (peppermint) and detox (eucalyptus or juniper). I remember you said something about allergies to scents so you may not be able to use these. Lemon works well for a variety of things. I've been using peppermint for the night sweats, but I put it on my neck and also on the painful spots and it's helping. Peppermint oil is very similar to ice packs, because it cools and those topical pain lotions.

PT is going okay, but I'm really getting tired of it. My calcium level shot up, supposedly from the 2000 IU's of D3, so I've been having trouble with heart palps and dizziness. I'm off the D until my next blood test this week, and hope my calcium goes down, it's never been this high before (6.8 ionized). I was told that you shouldn't have heart probs unless you ca goes to 8, but it's really weird not knowing what the heck is going on, as you know.:confused: My last breast us wasn't very good (6 cysts) plus one ovarian, so the calcium level may be driving some of this. I have to wait 2 more weeks to find out if I need a biopsy on either of these two, but I *really* doubt it. I had a C 125 test, and am waiting for those results.

I'll keep my fingers crossed that they figure out the L4 prob and your cyst. Are you going to be doing something about your thyroid situation? :wave:

Desertbloom,
Check out one of the biggest grocery chains that sells natural foods they carry the gum and the mints. I don't know if I can post the name of the store or not but you can probably figure it out.

DB-Yes, if you can't find the mints at a local grocery try online. The new dentist has put me on greater alert than the last -about bone loss in jaw and other issues-I am glad to know but it was a big bummer. He did the around xray that you previously talked about. I feel I am in much better hands from a dental viewpoint, but way more concerned. Are you doing a flouride rinse too? I am esp. concerned to get my mouth better before a bisphos, if that is what happens post forteo.
All the recent discussion here about denosumab was a let down -I hadn't realized before that it was same action as the bisphos. group.I thought, well the plus is that it is by injection--but maybe then that is not a plus at all and makes it worse in fact like the other injected bisphos. that have a higher risk of ONJ. Amidst all of what you are going through,I guess you need to decide pretty soon what you will do to preserve your wonderful gains.
You are really going through so much right now . My prayers and healing thoughts go out to you. The not knowing seems the really hard part . Hopefully, your team of doctors feels good to you .I have experienced a good med team that helped me through, and unsympathic / cold doctors that exacerbated a bad situation.
Do they check your serum calcium too at the same time as the ionized? If so, how does your serum calcium look? And did they check the pth at the same time as the serum--if so, how did that look? At a recent ent visit, the dr. said you have to do the pth and serum calc tests at same time to see how they are functioning together at a single point in time.And if serum and pth are ok, what would that mean , if just your ionized is elevated ? During these tests are you stopping the forteo as well as the vit d ?
I did a little reading about the c-125 test and I bet you are really ready to get that result! What triggered the test being done now-was it a change in the cysts or new cysts?
I am sorry to hear that the pt is discouraging. You have worked so hard .
I feel for you DB and hope that you get some clarity soon . Please know that your online support team is right there with you!
I hope your support system both within yourself and outside yourself feels pretty good too. Do your doctors ever ask about how you are coping? Are you keeping yourself surrounded by the colors that you love? I wish I could do the aromatherapy but I cannot-it is instant massive headache. I think my immune system is telling me do not go there. I now focus on the birds, trees etc. The hummingbirds are coming back and I recently saw a few.Their colors are dazzling.So that brings me joy. You must be seeing them too,where you are.
About my thryoid - my levels have been so fluctuating, it seems like the dr. is trying to see if she can stabilize me. My throid med was raised and after 3 wks on the new dose, my brain is just beginning to function again. Also my emotional state/reactions etc has improved alot. And the xanax I was to take on a regular basis too per the endo, I cannot do ,it is immobilizing . So, per pcp I am only going to use at very stressful times-medical visits . I cannot say how improved I feel cognitively now with thyroid hormone increased. When my thyroid is off and the tsh climbs I lose my mental abilites. That is a real trial when you feel you cannot think clearly . And, the 7 thyroid nodules and constriction of the thyroid makes me think surgery is becoming more likely . Removal has its risk with potential damage/destruction of parathyroid gland and/or laryngeal nerve. In the hands of a good surgeon the risk of either is 1-2%from what I have read.Then there is the bone issue with the thyroid fluctuating wildly- , I could go hyper as the increased dose builds and that could mean more bone loss. I would like to get off this hypo/hyper ride with its threat to my bones.
I imagine you must be having gorgeous weather right now and hope you can enjoy that. :)

Desertbloom,
Check out one of the biggest grocery chains that sells natural foods they carry the gum and the mints. I don't know if I can post the name of the store or not but you can probably figure it out.

Hi Taape: Thanks for the info... I'll look further, and I'm sure I know what store you are referring to so I'll look there. I can't chew gum anymore so I'll look for the mints.

How're things going with you, have you found anyone who will rx a new med, or let you continue on Forteo. I heard about some news about a week ago, that I can't verify about Forteo, maybe you've heard about it? A lady told me that some new info was released about using Forteo for longer than the 2 years...she said it's was from her Endo. I've tried to verify this, but can't find any press release from Lily etc on it. I'm seeing my Dr next mo and will ask if she has heard anything about new info on continuing Forteo beyond the 24 mos.

Good luck finding something to take...

Hi Osteo... I'm glad you had the dental x-ray that does the 360 degree view. I've known that I have quite a bit of bone loss in my jaw for many years now, and was told if you have it in other parts of your body the likelihood of having in the jaw are common, but I hope you are an exception to the rule.

I'm also using the flouride rinse, and also the antibiotic rinse, but only where I had the teeth extracted. I put the rinse on my tooth brush and then brush around the incision. It still hasn't healed all the way, so I hope it does soon. I've never had trouble with incision healing before, so we'll see what happens. The oral surgeon says that the tissue is resurfacing, but I don't know if I buy that. It's not open, but I have a divit in the tissue and it's still tender.

Which discussion are you referring to in regards to denosumab? Was it the remark I made about the ONJ/ASBMR lecture? I didn't think anyone responded to my post so I wasn't sure which discussion you are talking about. Did you listen to that lecture? If so what did you think?

I'm still thinking I'll switch to Evista, unless something else comes up before then.

Ocassionally I have my total Ca checked along with the ionized (when I go to the osteo doc) but the Endo usually only checks the ionized unless I ask him to do both. In the past my total (serum) Ca was always normal and only the ion Ca was elevated. This next test he's checking PTH intact, ionized, D 125 and D 25. The only reason they ordered that Ca 125 was from the results of the Ca test. My ovarian cyst hasn't changed any, but the Ca test alarmed the OBGYN, so he ordered it. I still don't have the results of that or the breast US. I feel they'll both be benign, but that's just a gut feely. My PTH is always in the normal range, but low normal so hyperpara is constantly ruled out. When I had the PTHrP test, it also came back low which is a positive result. If PTHrP is elevated then they suspect some form of cancer. I'll ask the Endo about doing the 2 Ca tests at once and see what he say's. For some reason he doesn't care what the total Ca is. He seems to feel that the bioactive form of Ca is more important. I don't stop the Forteo before the blood draw, I just take the shot after the lab test on that day only.

I'm glad you have Drs that are taking *all* aspects of your health into consideration, I don't think anyone has ever asked me how I cope with any of this. I took 2 weeks off from PT, but will probably return next week. I do all I can to stay positive and am forever thankful for *all* of you here!!!

I surely hope you can get this thyroid situation figured out. I've never had to deal with what you are, but I feel for you. Just be sure that if you consider surgery that you find the best surgeon, since we've read the same things about the negative possibilities with the larnyx and parathyroid glands.

The weather is beautiful here and the flowers are in full bloom. We have 2 ducks that return every year and hang out in our yard. They are so cute, but messy and a bit destructive. The run up to us when we come home but they're also using my grape hyacinth plants as a comfy bed:mad: This will be the 5th year the ducks have returned and I don't think they are the same ducks, but my dh thinks the female definitely is because of the way she reacts to us, like running up to us with the tail swishing, quacking in a funny low tone like she saying something *real* important, if you walk away from her she just follows with the quack quack talk. We feed all the wild birds/humming birds so the dry food that falls to the ground goes straight down the ducks throat-actually they help to clean up the mess the other birds leave by knocking it to the ground. My husband had a humming bird land right on his glasses-while he was wearing them when he was filling the feeder.

Good luck with all your different health situations, and I hope you finally got the right team of Drs going for you. :angel:

Taape and DB-
Several months ago, the Rheum that I went to about my osteoporosis who gets alot of osteo patients in the metro area, said that there has been info out about safety parameters of using forteo beyond 24 months . She said that the latest info out shows a better than expected safety profile for extended use beyond 24 months. So, lets keep the board posted with any info we hear about this! Taape and DB I am hoping this info is correct and that both of you may soon have this option.
DB-just to clarify there was bone loss in the jaw xray that the dentist showed me. Bummer. Sorry to hear that your docs don't ask how you are coping-it would seem like a real impt. question, though I know from my own experience too that it is not commonly asked. My current team is empathetic and it has taken some time to find competence and empathy together!The ducks sound too cute-too bad they are messy!

Osteoblast,
Are you able to tell us where the information on the safety of Forteo past 24 months is? Like a journal or just a research study in your local area? I'd sure like to get my hands on something written to bring into my present Endo and then take to the new one.

No unfortunately I can't because I didn't ask the Rheum at the time where the info was published. And, I am not going back to see her. Sorry. I will look around and see if I can find anything published.I will do this tomorrow afternoon and let you know then.Taape, I am still hoping for you! I would love to see you get back those gains you had. :)

Taape-I looked and did not find any publications which discussed treatment with forteo beyond 24 months. Maybe someone else will find something or we will learn more as we go to our next dr. appts.

Osteoblast,
Thank you for looking. I don't know which medical journals to begin looking in. I hope I can find something in print though.

Hi Taape: I'm still looking for something and have been going through the Endocrinology Journals (which are accessable) the JBMR, and PubMed. I may have the info by next week. The original person who told me about this is going to see her dr and let me know where the info is coming from. Evidentally, the info hasn't been published yet so I've been looking in upcoming Endo Journals that actually have previews you can access for free.

I'll let you know what I find out, as soon as I hear something.

Thank you Desertbloom. I'm not great at research this stuff. I did try NIH as they have tons of journals but looked in Rheumatolgy ones so far.

I've got my DEXA scan next month and afraid it will be worse so want to have something to try and justify more Forteo.

There is a clinical trial at the UC Davis using Forteo patches that you put on for 20 minutes a day rather than doing the injections. I'll try and check up on that on line. I wonder if this is going on at Loma Linda also.