Hi all, I guess this is a post for awareness. My doctors have decided to start treatment for non tuberculosis mycobacterium kansasii lung infection or m.kansasii for short. I'm facing 18 month of treatment with rifampin, isoniazid and ethambutol, that's two very heave antibiotics and one antibacterial. The infection is identical to tuberculosis except it's not transmittable from person to person and it can infect you through breathing in water, think steam and mist or potting soil.
It happens to patients that are immune suppressed as most of us are or pre existing lung condition like astma and copd. My rheumatologist said that the plaquenil alone make me immune supressed. Funny how she only mentioned that now, infectious disease doctor said the same.
My warning to y'all is this. If you have a chest congestion or lung infection that does not go away by a course of antibiotics ask your doctor to have your sputum tested! That's what my pulmonologist did. If we had kept throwing antibiotics at it we would have made the mycobacteria resistant to treatment.
What irks the heck out of me is that I never got my joint pain under control since rheumy suspended my Arava ahead of time in anticipation of this treatment and I'm in a major flair. I wrote her a myChart note immidiately when the descicion was made to get some help. I hurt so bad and can barely roll out of bed due to pain and the stiffness lasting two hours. I did not want her to blame the joint pain as a side effect to one of the meds which she has a habit of doing. Of course she is on vacation now! The stand in doctor did put me on a steroid taper of 10 mg for five days then 7.5 for five and then back to my standard 5 mg. My rheumy frustrates the heck out of me! I do have the joint swellings and all and have for three years except she never get's to see it!
The sjogren's is on a war path as well. My eyes are so dry and irritated and the blepharitis is running amock despite good lid hygene.
Urgh, I better stop whining now!
So sorry to hear about this Tharrell - I hadn't heard of this infection before.
I can't suggest anything for the joint pain but I do seem to have got my blepharitis under control with tea tree oil - if you are intereted to know about this do message me.
Thanks Aramita for reminding me about the tee tree oil! I had forgotten about that. I will pull out the bottle so I will see it to use it.
Araminta-
Could you post the tea tree oil treatment you use? Blepharitis has been a chronic problem for me since the beginning of these lovely symptoms. Thanks!
Well, what was assumed is true and now the treatment begins. Hope you tolerate the 3 meds. I became allergic to the rifampin after a couple of months and had to be changed to clarithromycin.
I think I had the mycobacterium for some time because it is an extrememly slow growing bug. Interestly enough I had been wearing a face mask for years when I worked in the garden or around the yard or when we made hay. I had no notion of my autoimmune illnesses or my immune deficiencies but I just felt that I was somehow higher risk for problems because of my allergies.
These mycobacterium infections are becoming more common as the population and those with autoimmune issues are much less able to fight off infections. The other thing we need to be aware of is the fact that water carries another form of these mycobacterium infections. Any water, even out of the faucet, plus the lake water and water from aquariums can cause a type of mycobacterium infection. rapid cycling of the My TSH went way up and I thought I would end up in a mental hospital. Hand wringing, anxiety, depression ,etc and happened to tell my infectious desease doc and she told me from the rifampin. Had to increase my thyroid meds until I quit the rifampin when I became allergic to it.
Hope all goes well for you and that you start to feel better. You may feel better with your
Sjogrens as the infection improves. All things seem to affect each other. Good luck. Irish
INspirD - I mixed 10 parts water to 1 part tea tree oil and kept that in a bottle. (It was bluegardenia on this forum who told me about this, and she used saline for the water part, however I used rosewater (rose oil plus purified water) because it was easy for me to buy that and I wasn't sure how much salt to use for saline).
When I wanted to treat my eyes, I put one teaspoonful of the mixture in a small bowl and then added another 5 teaspoons of rosewater. Then I warmed it up in the microwave - it needs to be hot but obviously not scalding hot. With a q tip I then applied some of the solution along the upper and lower eyelids. I felt a difference in a few days but kept doing it twice a day for three months, I think the blepharitis has now gone, though I do still have dry eyes.
I believe the tea tree oil kills off Demodex mites and bacteria - if the blepharitis has some other cause it may not work. Good luck, anyway. :)
PS: I am still using the treatment but only once a day now.
Thank you Araminta! :)
Tharrell so sorry to hear about all of your troubles. At least they found the problem and are able to treat it, albeit over a long period of time.
I am confused about docs saying Plaquenil is suppressing your immune system, all that I have read and been told indicates that it is not an immunosuppresant. If anything, my immune system was stronger when I was on Plaquenil with my blood counts being in the normal range for the first time in years. Unfortunately I can't tolerate the side effects so had to stop taking it.
Good luck with the treatment and hope your flare ends soon!
Irish, you made alarm bells ring in my head about TSH. I don't have a thryoid, taken out December 2014. My TSH was stable for a year, then bam, last January I tested out at 44.8! I already had two dose adjustments. At last testing and dose adjustment I was at 5.8. I get another blood test July 27th. Which reminds me, I need to update my endocrinologist at MD Anderson! I'm now on 200mcg synthroid. M. Kansasii can be transmitted through water as well, I believe all the mycobacterium can be. As you say, there are specific strains that you can get from Fish tanks and milk farms.
But Irish, how am I supposed to know when I have a reaction to the meds and not a side effect of my conditions? I have autoimmune uticaria so I itch all day and get hives and welts anyway. With Isaac's I have the muscle cramps and fasciculation daily. I guess I just make sure I mention everything to my ID doctor and let him figure it out.
Sjogirl, I'm still scratching my head about the plaquenil as well! My oncologist wants me tested for immune deficiencies, that was his first reaction when I told him about my infection. My rheumy doesn't believe it neccessary, but said we can do it next time we run my blood tests. I see her in August, I just have to be firm and insist on it when I see her.
I too feel the plaquenil had made me stronger. 3 years no colds when before I averaged 2-3 colds a year.
I have had skin issues off and on a lot also. I had a strange 3 inch diameter hivey looking area right above my right knee that I happened to tell the doctor about when I spoke with her on the phone. She told me to go to the doc and have them do a biopsy of the rash and send to pathology to check it out. It came back allergic in origin or some such wording. It was not really itchy but red and round. I assume that she had seen this before as she has a big practice at the university and sees a lot of weird stuff. Hope all goes well. Keep abreast of the thyroid so you don't get in a mess.
The rifampin makes the thyroid medication cycle through the liver so fast that a person needs a higher dose. Good luck. Irish
I hope your treatment goes well. I think this is what my cousin is being treated for ..maybe not quite the same. She only has to do a few months. She called it "dormant TB."
The first time she tried the treatment, the meds crashed her liver. She had to stop and try again. I think she's in treatment now.
Best of luck to you!
Hi Jazzlover. I'm wondering aloud here. Did your cousin do the tb test and it came back positive and that's why it's considered dormant? My son did the tb test in the army when he enlisted and came back positive. They were going to treat him for tb, but said they would wait till after basic training. Thank God they did. My kids were born in the Middle East and part of their first shots was the BCG shot. Kids who had this shot may test positive on tb as happened to my son. His gp at home ran the tb blood test which is actually more accurate and it came back negative. The army would have put him on the same meds I am on now, m.kansasii mimicks tuberculosis and on xray it shows up the same, for 18 month needlessly! This treatment unfortunately has the potential to make me sicker in order to eradicate the mycobacterium. My husband said it's principle is like chemo.
I don't know. What's scary is that she has no symptoms. I myself would not want to take those drugs if I had no symptoms. She is ill with quite a few problems as it is. (auto-immune also)
You may want to find out, if you can, if she had the BCG which is an anti-tuberculosis shot as a baby. If not she could have a dormant form that she/he needs to erradicate, because TB is contagious and can make you very very ill. I'm just glad my version is not transmittable! I just hope I don't start to cough up blood, or get more nodules in my lungs!
Tharrell, do you think your copd may have set you up for this infection? I hope the meds work soon and you feel better. I feel that plaquenil has actually helped my immune system (keeping my fingers crossed here.) Except for the sun rash I get, and nightmares, it's working..... No med is void of side effects.
I was not "sick" when I was diagnosed with the kansasii but I did have MRSA when I was seen and had a cat scan of the neck checking for abscess in throat. The scan was low enough that it picked up the top of my upper lobes which showed some tubercles. Docs called me and said to stop my Methotrexate and get up there ASAP. Had chest and lung scan which showed tubercles in lunges, liver and spleen. The treatment was listed as 18 months but I was able to stop in 12 months per repeated scans and sputums.
I have to admit that I was not sick when I was on the meds other than the upset of thyroid med from the rifampin. I happened to be on 26 meds at the time. All I did was take meds cause I had anemia and some other stuff at the same time. A crazy experience I will say. I didn't have sweats or fever or anything. Turns out that soon after I finished all the tb meds I saw immunologist and was diagnosed with severely low t-cells. Well, people who are immunocompromised are high risk for these mycobacteria infections. Irish
Hi Deb, yes copd and any other lung condition as well as beeing immune compromised sets you up. I have been very sick for a good while now and am hoping that knocking the m.kansasii out will fix almost if not all of it. My weight is stable at a 117.7 lb yet I continue to loose bulk! I look positively anorexic! I have severe night sweats, so I hope those will be gone after treatment as well. One day at a time!
Today the fatigue from the meds hit me like a brick wall! I thought I had profound fatigue before, but this is a whole new level!