MAC (Mycrobacterium Avium Complex) - Page 16

CARAT414 · 07-19-2005, 12:56 PM

Hi, dont mean to invade in your posts and although I do not have the lung infection that you all speak of I do take the same anitbiotic medications. 500 mg Zithromax, 1000 myambutal, 600 mg Rifampin daily. I am 40 years old and contracted a bone invection called osteomyletis. I have been hooked up to an IV pole since May 4th. I had all of my teeth and 75% of my jaw bone removed. And until I get clear results from the lab for three consecutive weeks, I have to continue this regiment.
My mother suffered from Osteoporosis (a possible genetic disease) and so I was placed on Actonel for help in provention since the osteomyletis is a bone infection.
I too had the same reaction to the Rifampin as Grammy1954. I was so sick and with jaw surgery to boot I was miserable. Finally a visiting doctor made a suggestion that they reduce both the Rifampin and Actonel to smaller doses, and slowly increase them so my body can adjust, it worked. They actually had to take the Rifampin down to 50 mg a day to start. I took almost a month to stabize me.
I just wanted to let you know that it might be an option you can give to your doctors. I know that its for a different infection but asking wouldn't hurt.

C

grammy1954 · 07-19-2005, 03:20 PM

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

CARAT414 · 07-20-2005, 04:31 AM

Thank you grammy. So far I am doing okay with the way that things are going. I have had a couple clean results but not in a row, and the levels that are reporting are very low, so its working. Just not fast enough for me. I dont have osteoporosis and the tests I got back on Friday say that my bone density is improving with the Actonel and I dont have any side effects from it that I know of.
I am having to go in for a stress test on this coming Friday. I have my blood pressure taken each week while at the lab, and my blood pressure was extremely high, and since I usually have a blood pressure on the low ends they are a bit concerned. Not that I see how walking and running on a treadmill is going to make me feel any better. God help the sole next to me if my IV port starts to move around and begins to hurt.
I feel for all of you that are having such a hard time being in so much pain and with your breathing. Both of my parents passed away from COPD so I understand how easy it is for you to get winded. My best to you all.

Casey

Life should not be measured by the breaths you take but by the moments it takes your breath away.

grammy1954 · 07-20-2005, 08:04 AM

Casey, that is great that the Actonel is helping you. Hopefully, you will not get osteo on top of what you are having to deal with. My sister tried to take Actonel and it messed up her stomach too. Her doctor has started her on a new pill for osteoporosis. She only takes one pill a month. I tried taking the Fosamax daily then I took 1 pill a week. But Fosamax sooooooo messed up my stomach. I swear I think the Fosamax is what gave me GERD because I never had a problem with indigestion & burning till I took the Fosamax.

You know when someone is sick they don't have to look far to find someone worse than them. I see you as that person. I just feel so bad for you. I know you probably have been in horrendous pain. Casey, how did you come down with osteomyletis? What are you doing for your nutrition? Will you have to have plastic surgery to rebuild some of your bones or is that even possible? I am going to research & read about osteomyletis so I can be a little informed & not ask you any stupid questions. I know a little about the infection but I don't know enough about it but I have never known anyone who had it.

Good Luck with your treatment plans. I know you would so love to get rid of your I.V. pole. I have read where a lot of people who have some type of Mycobacterium have to have picc lines or a portacath to get their antibiotics & others who just go in and get i.v. infusions. I so hope I do not have to go that avenue.

Take care
Sharon

CARAT414 · 07-20-2005, 06:55 PM

Grammy, I do not know 100% exactly where I contracted Osteomyletis, but we are realitively sure that I was exposed to it at the hospital where my father also contracted it, or I contracted directly from my father. I really dont want to know. I lost my father to his illnesses on April 16th. I had my surgery on May 4th. I am one of few that do not get the exteme sharp pain that is usually associated with this infection. I do have alot of pain at times but I do not think it is anywhere near as bad as others have had. The team of doctors that I have say it could be partially due to the fact that I didn't have the infection long before treatment was started, and the effected areas were removed. I have learned through the internet though that most people that get infected with this dont usually have complete removal surgery as I did or are they as lucky as I was to have a doctor who identified it so quickly. I have heard of some that are still trying to get diagnoses years after the symptoms began.
I have already had a titanium rod and plate inserted into my lower jaw, and on August 2nd I go in for immediate load implants with dentures. I also get temporary dentures with an attached appliance for the tops. This will at least let me have teeth, but just for astetic purposes, I will not be allowed to chew yet, and my face should not resemble a bassett hound anymore, I hope. LOL I will begin the bone graphing part for the top jaw bone sometime in September.

Thank you for thinking of me, and no question is ever a stupid question, but know that although this has been a rough road, I still feel as though you and the others here are on more difficult one. My infection is all but gone from my system, and the chances of a recontamination is beyond my math skills. You all on the other hand must continue with the constant treatments, and tests.

The doctors are pretty confident that I will not develop osteoporosis since I have already began a treatment plan to prevent it. My mother took fosamax, she had no issues at all from it. She did hate having to take it at night and stay awake for awhile afterwards but she dealt with it. She had to do that because it couldn't be taken at the same time as her other meds. I never have tried that medication perosonally.

Good Luck, have a wonderful day

Casey