Ann, I am a tall & thin woman. I had a hysterectomy 18 years ago and like you I did everything I was told to do such as extra calcium and took the hormone pills for 15 years. Even though I took all the extra precautions to prevent osteoporosis, I got it anyway. I tried all the drugs they had for osteo and they upset my stomach so badly I had to quit taking them. I now have an Aredia infusion every 3 months for my osteo. Aredia is actually a cancer treatment for breast cancer because it builds bone mass. So now doctors also use it to treat osteo. I have had 3 infusions. I asked my endocrinologist how long I had to take the aredia infusions and he said if I could tolerate them o.k. I would do them forever. I hate the ideal of all those strong chemicals going into my body, however, if I was taking the meds for the osteo then I would still be taking chemicals. I try not to take much meds but sometimes you have no other alternative. We have all found that out with our diseases, huh? I have not been able to do much of anything the past 3 months because my back hurts so badly. I actually did some exercises for my back and it set me back for 2 or 3 weeks. I got much worse.

Let's hope we all have a much healthier and happier New Year.

Kathy,

I too have osteoporosis. I tried all the meds for it and they all messed up my stomach really bad. I now take Aredia infusions every 3 mos. for the osteo. My osteo has immproved. I have been doing the Aredia for 1.5 years. Aredia is a breast cancer treatment, however, they have proven it is good for osteo because it makes the bones stronger. Maybe a lot of your problems is the meds for osteo too. The antibiotics for Mac are very potent. I have read from another forum that some people are on daily iv's for their antibiotics for different reasons. I don't know if some of these people can't take the drugs by mouth or if it is because they are so ill with the disease. Have you ever researched "atypical mycobacterium & non-tuberculosis." Those are two other words you can research because these are the same thing as Mycobacterium.

Kathy, get stronger with your opinion. Make your doctors sit up and listen to you. Tell them that you have spoken to other ladies who have this disease. I know Ann & Peggy from this forum will soon post and give you some advice too. Most doctors do not know how to treat this disease because it is not a common disease. The information doctors have is from medical books and that is not enough information to describe the patients various symptoms. Sometimes I have horrible chest pains & when I have told the doctors this they say that is not normal. Well that is a bunch of crock because from the other forum I have read other patients experience various types of chest pain. ALso, all the research I have done states that Chest Pains is a symptom of Mycobacterium. Needless to say, I will be going to a new doctor after that doctor made that comment to me. I have had a horrible time getting a doctor to be proactive in my case to fight this disease. The doctors I have seen act like it is not a big deal but they are sooooooooo wrong. I have read on another forum where several people have had to have part of their lungs taken out because the MAC destroyed them. Everything I am telling you is from healthy people who came down with this disease. None of them has AIDS & I do not have AIDS.

Do you care to tell me how old you are & the state you live in? I email a lady who has MAC and she has already had part of her lung taken out. She was diagnosed in 2003. She goes to Denver too. I just got an email from her and she said that the staff at NJ told her that if it wasn't for the southeast and Hawaii that they would have to close their doors because most people with mycobacterium came from those areas. I also email a second lady who goes to Denver and she said the same thing. The second lady lives in FL and is moving to TN. I live in Nashville, TN so I picked up this bacteria in this state. I am 50 yearsa old. Those other ladies are 47 & 56. So from what I have read, MAC usually attacks older ladies. Heck, I thought I was young till I came down with this disease.

These antibiotics make me have diarrhea, lose my hair, and cause joint pain. But I am willing to suffer with these side effects if it will help me get rid of the bacteria. I also take 2 acidophilus pills a day with these antibiotics so it can put friendly bacteria back into my stomach where the antibiotics kill. Did you try taking acidophilus a couple of hours after you took the antibiotics? The brand I use is IFlora. I think NJH recommends a different brand but they do have their patients take acidophilus or at least I read that from another forum.

Just keep posting Kathy. Knowledge is power & what you don't read about this disease you can definitely learn from people who share the disease.

Take care

CARAT414

You are not invading only any posts. We are all here to help each other. Please feel free to comment wherever you like. I am soooooo sorry for you. Gosh, you sound like you are having a horrible time with your infection as well. You are right about the meds, our treatments sound a lot alike. Rifampin is sooooooo bad. It tore my stomach up badly.

My mother had osteoporosis as well and I have it in my neck & lower back. I couldn't take the actonel, fosomax, and some other types osteoof drugs so my Endocrinologist suggested I do the Aredia infusions every 3 mos. My last bone scan showed that my osteo was improving so I guess the Aredia and 1800 milligrams of Calcium citrate daily & one pill a week (50,000 units) of Vitamin D have helped. Do you think my osteoporosis treatment could be an option for you? The Endocrinologist said that since I couldn't tolerate the meds by mouth that I could do the Aredia infusion or give myself daily injections. I hated to think about the daily shots so I chose the Aredia. I just know all of the meds, injections, infusions for osteoporosis are very strong chemicals we are putting in our bodies. But you can suffer with broken bones, being in a wheel chair or choose the chemicals so I chose the chemicals.

Take care
Sharon