Mycrobacterium Avium Complex

[shirley29485]

I have been on treatment now for 12 months.. I had a pulmonary appointment along with my CT scan of my lungs. Is it unusual to be on treatment for a year and not have any changes? Sputums are negative but CT shows that I still have it with no change.

[helingmic]

Welcome Shirley, In 2010 I was diagnosed with the same, I was given Rifampicin (the only drug that treats this and Clarithromycin. the notice says for at least 6 months. My consultant said for at least 2 years! I had it for 2 and 1/2 years. I got better and better, but I had to take it regularly, because this bug can just flare up again after so long.

The only snag is that it stains everything orange! In fact, my consultant used to ask if my urine was still orange, just to check I was still taking it. So The answer is yes. It takes time to eradicate it.

Last September, I was affected again by a bug of the same family but with another strange name, mycobacterium Gordonae!

Fortunately, this one went quickly.

I'm afraid you will have to persist. Best wishes,

[shirley29485 in reply to helingmic]

I was taking Rifabutin and had major reaction to it..so I was removed from it..the next one was Avelox..reaction again.so I have been on 2 meds only.. Ethambutol, and Azithro...I know I need the 3rd pill but not sure there is anything they can give me. Im sure if the change is not better in 8 months I will be doing something else..just very frustrating because of the pain...

[helingmic in reply to shirley29485]

OK. for me to the contrary, I am allergic to ethambutol. My eyesight become so distorted that I have the impression of looking through the bottom of a bottle! I think you and your doctor have to see what suits your body. It's difficult indeed to try a drug and be sure of its success.

it's particularly important to talk it over with your consultant, so he/she knows exactly how you rect

I'm sure there's a drug that will suit you, but I don't know the whole range of them. You could look it up on patient.co.uk. They give the condition and the treatment. Hope this helps.

[carolg1]

Hi can you tell me what mycrobacterium Avium Complex is I am very curious x thanks

[helingmic in reply to carolg1]

Hi Carol, mycobacterium is the family of pathogen which can give difficult disease to treat, like leprosy, tuberculosis and other nasties.

they come in subdivisions. I suppose -but I don't know- that avium (Latin name for bird) must have been found in birds when they did experiments in the lab.

there a M. Avium Intracellulare, to which belongs the M.tuberculosis.

Wikipedia states that the Mycobacterium complex affects particularly people who have a weak immune system ( I have neutropenia, lack of white blood cells), people who have HIV are vulnerable.(I haven't got HIV, but my immune system is damaged as it destroys its own white blood cells. Fortunately there's a fantastic treatment to boost the production of white blood cells called GCSF or Granulocytes-Colony Stimulating Factor . This means that within minutes of an injection, the body manufactures millions of white blood cells)

Hope you find this helpful.

[carolg1 in reply to helingmic]

Hi ,Heligmic, It does'nt really help I just keep living in hope that I will find out whats going on with me, I have been sufferering with vast amounts of mucus for a couple of years but the past few months its really bad much worse, I didnt think it could get any worse you may have seen a couple of my posts !! after a couple of diagnosis of chest infections my least one being that there are multiple bugs present but non specific so I asked to be put on long term antibiotic therapy with azrimycine which my gp said was worth a try, this is my second week in and oh my lord the mucus seems to get thicker and more !! as if my whole body is clearing out, or is it just my vivid imagination, I am at my wits end with it xx Carol

[helingmic in reply to carolg1]

Carol, don't panic. But try to find more information from the BLF helpline: 03000 030 555. they are experienced nurses that can give you an expert answer. Try it.

[carolg1 in reply to helingmic]

hi helingmic, I will ive rang a couple of times but no one was available but I will try again thank you xx

[helingmic in reply to carolg1]

Good, persist, you have to in this world! xx