Yesterday, I found out that I have osteoporosis. Not osteopenia (thinning bones), not mild osteporosis, but bad osteoporosis...with a capital O. I'm at serious risk for spinal and hip fractures. Shocking, because I'm only 44, and prior to getting Lyme Disease, I led an incredibly active life and tried to eat healthy.

When I first suspected this might be a possibility, I did what I always do...I bought the most highly recommended book I could find on the subject (The Bone Density Program by Dr. George Kessler) and I researched on the internet. Here are some good links:
http://www.nof.org/
http://www.osteo.org/
http://www.calciuminfo.com/index.htm
http://content.health.msn.com/content/dmk/dmk_article_40065 (excellent article cover description of the condition, risk factors for men and women, prevention, and treatment)

In addition to reading about the traditional risk factors, prevention, and treatment, I found out some other things that should interest all Lymies.

Many of the drugs we commonly take can interfere with the bone remodeling process, and therefore, increase your risk of osteoporosis. Some of the drugs are:

1. Chemotherapy, including methotrexate. These can damage your bones (I mention this because a few of us have had chemo and maybe a few have taken methotrexate in connection with anthritis, psoriasis, immune disorders, etc.).

2. Diuretics -- increased urine output equals increased excretion of nutriets, including important minerals.

3. Anticonvulsants including phenytoin and barbituates.

4. Steroids (corticosteroids and adrenal corticosteroids).

5. Thyroid hormone.

6. Antacids with aluminum.

7. Long-term Antibiotics!!!!

8. Cholestyramine.

9. Anticoagulants including heparin. I mention this because of the new heparin treatment given to some Lyme patients.

10. Bendodiazepenes, including valium, librium, and xanax.

You might also be interested to know that some of the conditions associated with our complex illness also contributes to bone loss or place us at increased risk of fracture:

1. Anorexia and anorexia nervosa -- not taking in enough nutrients has an obvious impact on bone loss.

2. High blood sugar levels inhibits absorption of calcium.

3. Various endocrine diseases, including hyperthyroidism and hyperparathyroidism.

4. Low sex hormones, whatever the reason. This applies to both men and women.

5. Irritable bowel syndrome (IBS), inflammatory bowel diseases (IBD), celiac disease (gluten intolerance), scoliosis, jaundice, cirrhosis, hypercortisolism (high levels of cortisol wich can be common in Lymies.

6. Lack of exercise. Need I say more?

I don't tell you these things to panic you or add one more thing of the lost list of things you have to worry about...but you should make absolutely sure you are getting enough calcium, Vitamin D, and other minerals in your diet. Additionally, you should take more than enough beneficial bacteria to replace the ones wiped out by antibiotics. Check out Dr. Kessler's book because it has excellent prevention strategies. The above websites are a good start.
 

My mom is 55 and has osteoporosis and it annoys me that I've been disabled for so long with this because I can't really exercise and I'm afraid of osteoporosis. I did not know that long term antibiotics can also increase the risk. Thanks for the heads up.

Jen

[This message has been edited by heckyeah (edited 17 April 2002).]
 

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I had my Vitamin D levels tested--do a search on google. A special type of Vitamin D. Well they were normal but I'm trying to take cod liver oil anyway. There is increasing evidence that we don't get enough Vitamin D. I think Mercola has some good articles on that. Vitamin D is necessary for bone.
 

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Lymetutu
 

Just a short paragraph out of the article:

"The use of magnesium today is often incorrect resulting in frequent failures to improve common conditions and complaints. One reason is this: Calcium needs magnesium in order to assimilate into the body. However, when too much calcium is consumed, it will pull magnesium out of body parts in order to assimilate. This creates a magnesium deficiency and the person will get worse and feel accordingly. This occurs with people who drink pasteurized milk. Milk is about 8 calcium to l magnesium and will create a deficiency in magnesium."

I recall that you had a possible metal thing - if I were confronted with it, I would look there first. But I have also experienced with many people what the consequences of metal toxicity can be.

Also, if you look at the metal situation first, your Lyme treatment will be more effective. Right now, it's like those two strong fellows pulling at either end of a rope!! Thinking of you.

P.S. Just noted that Jen13 also suggested mercola. She is right - he usually covers all facets. The strength of his website is due to the fact that on a weekly basis he scours through all medical publications, important journals, and picks out what he believes is of importance. He tends to be a little overboard in his food regimen as far as I am concerned (I love to eat food....)all food), but the combination of orthodox and alternative suits me just fine.

 

Thanks to every one of you for the ideas and suggestions. Looks like you've given me more stuff to read!

Yes, I had a bone density test (DEXA). I hurt my foot just by walking across my living room floor a few weeks ago (felt a pop and had a big bruise on top of my foot). Xrays showed no broken bones but definite osteopenia. So my doctor ordered the DEXA. I had been worried for a while because of all the risk factors -- especially having had chemo and being so sedentary for the last few years.

Runner, my report is given in terms of standard deviations from the norm. 1.1 to 2.4 standard deviations is osteopenia. More than 2.4 standards deviations is osteoporosis by definition...my spine if 4.4 standard deviations from the norm, and my hip is 2.8. Yikes...now, that's sobering.

My doctor prescribed Fosamax 70 mg. (once a week) and Evista 60 mg. (daily). Of course, I'll be taking calcium supps and vitamin D and trying to get some exercise.

Thank goodness medicine is at a point where these problems can be detected prior to a disabling fracture and there are medicines that can be taken to help us recover lost bone mass. Dr. Kessler details some good strategies to help with treatment.

Remember, it's never too late to improve your bone density.
 

I'm glad you got the bone density test...whatever you do, ask for a copy of the report. Don't let the doctor just tell you everything is ok...you need the results. If you don't like what you see, get a second opinion.

The problem is that so many doctors think bone loss in women is normal so they will tell you the test is normal even though it shows significant bone loss. That's complete baloney. Osteoporosis is preventable and treatable but we have to know what we are dealing with and get to a responsible doctor.
 

http://www.bact.wisc.edu/Bact330/lecturelyme In a minority of individuals (11%) the development of chronic Lyme arthritis may lead to erosion of cartilage and/or bone. Other clinical manifestations associated with stage three Lyme disease include neurologic complications such as disturbances in memory, mood, or sleep patterns, and sensations of numbness and tingling in the hands or feet. Written and Edited by Kenneth Todar University of Wisconsin-Madison Department of Bacteriology.
In a minority of individuals (11%) the development of chronic Lyme arthritis may lead to erosion of cartilage and/or bone. Other clinical manifestations associated with stage three Lyme disease include neurologic complications such as disturbances in memory, mood, or sleep patterns, and sensations of numbness and tingling in the hands or feet. Written and Edited by Kenneth Todar University of Wisconsin-Madison Department of Bacteriology.
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there is very little info on this- but it's there.

I haven't tested pos for Lyme- but because of this bone issue & recent nuerological symptoms- i suspect i have Lyme. I have what seems to be a systemic bacterial infection & bone erosion & I was never on long term abx.

It really is concerning though that calcium interferes with some abx, & so people may not get enough making things worse (?)

[This message has been edited by caat (edited 19 April 2002).]
 

I'm sorry- i realised it's hard to find on that page. here is another one; http://www.kcom.edu/faculty/chamberlain/Website/tritzid/lymedis.htm

it's under the heading "pathology". There are lots of sites on this. Merk manual has one too. I'm trying to find the studies on it in case my doc doesn't believe it.

and i didn't mean to be so abrupt about it either. I'm getting bone erosion myself & realise it is a very scarey thing. I was sure i must have late syphilis untill i read about this symptom. & I'm now worried about taking abx & still getting enough calcium.
 

tums, i think are actually not a good calcium supplement and actually - because of aluminum content?- actually pulls calcium from the bones. when pregnent w/my daughter had terrible problem with heartburn/acid reflux and was told to quaff tums ex. turns out that dr has a terrible rep - i seem to be good at seeing the very worst - and i also gobbled lots while pregnant w/my son.

it is important to take a calcium supplement that also contains the right amount of magnesium. also, i know i was pretty much bed ridden for a few yrs w/the undx lyme and when i did go out could not take the sun. my dr told me that w/out vitamin d, the calcium goes right thru you. so if you don't go out in the sun, add vitamin d to your probably already extensive list of supplements.
 

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oops!
Lymetutu
 

I can't exercise either (on crutches for 3 years) and just started physical therapy. My PT said to get checked for osteoporosis too. I'm almost scared of what they'll find. I am totally atrophed everywhere. Also, carbonated beverages steal calcium from the bones. Many teenage girls are being diagnosed with osteopenia because of all the soda consumption in our country! Agghh! Guess I'll be calling my doc for a test.
Liz

Email Linda ([email protected]), and ask about John Lee, MD. He claims ++ results treating osteoporosis with progesterone. Let me know if this helps you.

I had osteonecrosis in my wisdom tooth extraction sites. GV Black, Weston Price and George E. Meining etc published data about this problem - only to be spurned by dental establishment. Progressive DDS see a high % of people w/ alveolar osteomyelitis (jaw
cavitations) and Lyme. Obviously the spiros could make themselves at home in the osteos, while tying up immune systems.

It takes oral surg to remove dead bone from jaw cavs. I had four of such. My MD (H) said they saved my hide. The ADA & their rubber-stamp state dental boards are more profit- oriented than safety-oriented, and act as if jaw infections don't exist. I think all Lymies with extracted teeth should get their extraction sites evaluated by DDS or Homeopaths who know how to diagnose jaw bone density.

Neil Martin
 

And to update you: I couldn't tolerate Fosamax or Actonel because they caused severe side effects. After a lot of research I found a product called ipriflavone also known as Ostivone. It is a semi-natural/synthesized isoflavone from soy. Studies show that it improves bone density as well as Fosamax but without the side effects. You need 600 mg. per day.

[This message has been edited by Katydid (edited 11 March 2003).]
 

I also had a bone density test as a baseline when I turned 50
and I was in the normal range (very very very good for my age) Same results when I was 51, 2 and 3.

Then I was diagnosed with Lyme and went on abx off and on for 6 months and limited my Mg/Ca and milk drinking and activity (felt like crap).

I'm off abx, and just had my bone density test, and I've dropped in 1 year from middle of normal to low normal. I don't need bone medication YET -but I'm close.

So I ask myself - is this excellerated BONE aging? Limiting the Milk Ca & Mg? Or Abx.. or all of the above?

I just don't know. Probably all of the above.

Hopefully I can stay off abx, and I'm back on my supplements, and I'll be retested in a year.

Yah - don't want the cure to cause other problems. If it's not one thing it's another.

For you guys in your 30's that already have this problem, I'd take it quite seriously.
Oh - and one other thing - being small boned
doesn't have anything to do with have a greater chance of having thinner bones -

Weight bearing activity is a must.. along with the correct amounts of minerals and vits.

Just a constant battle isn't it?

Barb
 

i'm glad you brought this to the top. in '98 when i was deathly ill with lyme, my whole body was stiff around the clock, my bones hrt terribly adn all of my joints , including my hip bones cracked loudly. i was too sick to shop, too sick to cook, had no appititeand often felt nausious. my periods were still like clockword but much lighter. with abx treatment they are more normal. i had requested a dexa scan. the upenn dr just laughed at me and would not do the test.

after reading your post, i went to my new g.p. and requested the test. the results were severe osteopenia. i was 41 at the time. i'm 42 now. if schwartz had done the test 5 yrs ago, we could hav ecaught this much earlier. schwartz i heard from other med professionals in the area prides himself on not beleiving lyme exists. his attitude is "your knee swells up and it goes away wether it is treated or not". you reallyl have to be your own dr. most of the ones i went to were arrogant, ignorant jerks.

just wanted to let you know that this post helped me before it got to full blown osteoperosis.
 

Took the first dose of Actonel and ended up going to ER by ambulance with unelievable
pain the very next day!

Never again! For actonel!

Here's a great website where I've learned a lot about this disease. http://lesann.tripod.com
I'm over 65, but there's a lot of info there on young people with osteo.

Leslie also has an osteoporosis group on Yahoo.

[This message has been edited by woody (edited 21 August 2003).]
 

I remember reading about your Actonel experience on another thread -- how awful. I didn't do well with Actonel or Fosamax either...excruciating neck and back pain.

I couldn't find the osteoporosis group on Yahoo. There are several but I couldn't tell which one it was. Could you give me the name?