MAC (Mycrobacterium Avium Complex)

[grammy1954]

Peggy & Ann, my brain scan did not show the Nocardia had spread to my brain. Thank Goodness. But the brain scan did show I had a Ischemic blood vessel disease. You know Ischemic has to do with strokes. In other words, my blood vessels are shrinking. I asked the lady who gave me my test results what causes blood vessel disease and she said,"age." I am only 50 and I don't consider myself old. Heck, my Dad is 92 and that is what I consider old. It seems everytime I have another test the test reveals some other disease. Gosh, it is frightening. Strokes run in my family. You know my brother died in December with a stroke but he also had very high blood pressure. My blood pressure always runs low. Monday my bp was 120/68. I have extremely thin blood. When I had the dye ran thru my heart in 2003 the doctors & nurses like to have never gotten my blood to clot. The doctor told me if I ever had another surgery to make sure I inform the doctors that I bleed freely. The lady who gave me the results of my test told me to ask my infectious disease doctor what I need to do about the Ischemic disease, maybe he might suggest a baby aspirin.
I don't think taking a baby asprin would help small blood vessels because I already bleed easily.

As long as I don't have brain lesions, I feel much better. I just pray these antibiotics will destroy these horrible bacterias growing in my lungs. I have had a good week this week. I have not experienced much sickness or chest pains.

Peggy, you sound like me. It seems we all keep coming down with some mysterious complications from our illness. I hope you staff infection heals quickly. Ann, my best wishes to your sister & brother-in-law. I will pray for him.

Take care & stay in touch.

[Kathy1813]

I am new on this Board and this is my first post. I hope you will read this lengthy message and maybe help me know what to do or at least give me some suggestions. I am so glad I found this Board. This is the first time I have “met” anyone who has this infection.

I too have a MAC infection in my lungs. This was found about 3 years ago this month. I have a physical each year but usually not an x-ray of my lungs. The only symptom I had was real shortness of breath one day while running up and down the basement steps. It was so bad I decided to make an appt. with my primary doctor who took an x-ray of my lungs and found “something” so he referred me to a pulmonary doctor. This doctor wanted to do a bronchosopy so he could find out what it was so I had that done. He said it was an infection and wanted me to see an infectious disease doctor which I did. This doctor sent in the results of the bronchosopy to a lab and it took at least 2 or 3 months to get everything back and that was when I was told it was a MAC infection. He wanted me to start on some medication and this was what I was given: 250 mg. Zithromax daily, 1000 mg. daily of Myambutal and 300 mg. Rifampin twice daily (making 600 mg. each day). He told me that I would have to stay on this medication until my lungs were clear and then for another year after that. He also said that he could not guarantee that the infection would not come back.

Antibiotics and I don’t get along very well and by the 4th day, I could not even leave the bathroom because of the diarrhea so I called the doctor who was not in and had to talk to another one and he said to start them all over and take just the Zithromax for a few days, then add the Myambutal for a few days and then the Rifampin. I did this and about 5 days after I added the Rifampin, I got a fever and chills and nauseated and had to go to bed. I was vomiting all night. This was on a weekend so I couldn’t call the doctor until Monday. I did stop the medicine, however even on Monday I was very sick and running a fever and could not eat. My doctor wasn’t in again and I had to speak to yet another one. He said to stop the medicine and make an appt. to see the first doctor I had seen (infectious disease doctor). I saw him in a few days and after telling him what happened, he asked me to start the medicine again – that it was probably a virus I had. So I started it again and the same thing happened. About 5 days after I took the Rifampin, I got a fever and chills again and was very nauseated and vomited again all night and part of the next day. I stopped the medicine again and saw the doctor. I then read the little writeup of side effects that the pharmacy makes up and saw at the end to call your doctor immediately if you ran a fever or had chills. I told the doctor this and he replied that those side effects would be rare. We decided it would be better for me not to try to take the medicine any longer.

I was sick for over a year after taking this medicine. I lost 25 pounds and couldn’t eat at all. I assumed that I lost weight because I couldn’t eat anything. I am thin anyway and got down to 90 lbs. This was an awful time in my life. I am not now being treated at all. My pulmonary doctor is now just keeping watch and I go in every six months for a chest x-ray. Last November I got pneumonia and was put on an antibiotic and they did another chest x-ray and they found that the MAC infection is now in my other lung but still very small. So far, in the 3 years I have known about this, the infection has not progressed, it has remained the same or sometimes a little better, but, of course, it has not gone away. The doctors have told me that these are the only medicines I can take for this infection. There are no substitutions. They have told me that this is the prescribed treatment for MAC. If I can’t take them, that is all there is.

I noticed in one post that someone has only been on 2 medicines which makes me wonder why I can’t be on just two of these –I have also been wondering about this hospital in Denver that I noticed one of you is going to see. Maybe they could give me a second opinion on whether there is something else I could try – or maybe I am better off with just going along as I am. I do get discouraged at times. I am not “sick” at this time at all – the only thing I can say is that I don’t have the stamina that I once had and I do have a little cough. In other words, I can’t shop all day like I used to. The doctors think it is probably the Rifampin that I can’t seem to take but they tell me that it is the most important one. They won’t let me take the other two without the Rifampin. I thought that surely there must be something else to try, but don’t know where to turn. I go to a large clinic where the doctors refer you to someone in the clinic which is fine, but that is why it’s hard to get a 2nd opinion here. And if I decide to get a 2nd opinion, I would rather it be at a specialized hospital who would maybe know more about it than these doctors do – that is if my insurance would pay for out of state. Any suggestions anyone? (BTW, I have gained back the 25 lbs. I lost)

[grammy1954]

Kathy, I am so sorry you are ill with this horrible disease. I am Sharon & I am getting another opinion from the doctors in Denver who specialize in mycobacterium. I have been suffering with this for 2.5 years. I am presently only on 2 meds for the MAC but that is not normal treatment. Most doctors & the Denver docs put you on 3 to 6 antibiotics to treat this horrible bacteria. Rifampin made me sick too so I can't take the Rifampin long. I was treated 6 mos. with Zithromax & Ethambutol and only 2 mos. with Rifampin. My doctors (who don't know very much about these bacterias) took me off the antibiotics because they didn't want me on them any longer. Within 3 months of quitting the drugs, I started having chest pains really bad. I called my doctor and told her the MAI was back and she was so condescending with me and informed me that MAI didn't pop up overnight. I waited another 6 weeks after calling her and then I called National Jewish Hospital and made an appt. to see their doctors. I had to call my Pulmonologist to scheduled a sputum test so I could send it to NJH and she had me to come in & see her. Anyway, she didn't want to look bad at NJH, or at least that is what I think, so she scheduled a bronch in June. I now have another bacteria growing called Nocardia, which is a horrible bacteria that can spread through the blood system. I also still have MAC. Kathy, please get another opinion because MAC rarely every goes away completely. Some people may be lucky enough for it to go away but most people usually get another bacteria along with the MAC. You must be on the right type of antibiotics to treat this horrible disease. There are other drugs too than what your doctor told you. From all my research & speaking with other people who have the disease, I found these were the most common antibiotics to treat Mac & they are Zithromax, Biaxin,Rifampin, Ethambutol,& Streptomycin. Others less commonly used include clofazizime, ciprofloxacin or sparfloxacin or levofloxacin, ethionamide, and cycloserine. Ann & Peggy are two other ladies on this MAC forum subject and they will probably give you some information as well. We all communicate to each other here because you are not allowed to post your email addresses on this forum. We are here for each other. It helps to talk to someone who shares the same disease as well as the symptoms.

If I can answer any other questions, just post them on the forum & I will answer you.

Take care,

[Kathy1813]

Thanks so much for replying to me. I feel so much better now that I have "met" people who have the same thing.

I don't think the doctors expect me to get over this infection, just that they don't see any alternative since I can't seem to tolerate the medication. Doctors intimidate me to some extent and I am afraid to even suggest a second opinion. I do state my opinion when I am in the office, but sometimes they just are abrupt and answer me where I feel like they are saying - this is it - "end of story". There is really no one else here where I live that I could go to where I feel I would get an unbiased opinion - I believe the infectious disease doctor that I went to is considered to be very good - that is why I was asking about the hospital in Denver that you are going to for advice.

I did ask my pulmonary doctor about other medications I could take and he did say there may be some, but their side effects are even worse than those I was taking so he didn't think I would be able to tolerate them either.

I am very sensitive to medications and find it hard to take many. I don't think I am allergic to them, just have the worst side effects.

I also have severe osteoporosis and between the two I do have to be careful what I take - don't want to make the osteo any worse and what I take for the osteo -I don't want to make the lung infection any worse.

I have looked on the internet about this disease and it is very hard to find anything about this regarding "regular" people. Most of what I read is about people with HIV - so I have found it hard to find out much about it.

I will be checking this Board everyday for anything new on this disease. And thanks again for your reply.

Kathy

[grammy1954]

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