NTM

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Hey

I haven't posted in a while, partly because I've been so sick and also had forgot password and was incredibly down, possibly still am.

My bronchieactisis has gotten worse which it's now classes as severe bronchieactisis but also I know I have pseaudomonas and also had another bacteria. But I still dropped over 12kg over December /January and had shocking sweats all day which was pure salty so they tested again and found another bacteria called NTM non tuberculosis mycobacterium which is one that can't be irradicated and requires intensive treatment this was a week ago and in that time was hospitalised on weekend as was coughing a lot of blood and chest pain so they found an abscess near heart on lungs the size of plum.

Has anyone heard of NTM in this group ? And is battling it ? as I'm the only one in my hospital being treated for it, and it has five lots of antibiotics twice a day to start and they have shocking side effects and most don't tolerate them.

some may know of NTM as it's a lot more people with it in USA

Thanks Kirsten xx

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  • Posted

    Hi I'm sorry to here you have been so ill and I know what you are going through,I have had mycobacterium and it is pretty intense ,the antibiotics are hard core ,but there is light at the end of the tunnel ,it has taken a long time but you will beat this don't become too disheartened ,it has taken me around a year to feel like my old self again and still get tired but with breathing techniques and good eating and a little exercise each day I have made a good recovery ,try and stay positive and I hope you make a full recovery

    Take care

    Joanne

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    • Posted

      Hi Joanne

      Thanks so much, I had never heard of it until now. And from what told and read it's not a great thing to catch, also odds are pretty unlikely to catch. But wow. I've now got regular tests with ompthamology at hospital whilst on medication as one cause color blindness and red tears. The others cause kidney and liver failure I've just started them and already feel worse than i did with virus and have them for 18months at which point they just look to control or contain bacteria they've said as it's hard to get rid of completely ever. Pretty sure my guardian angel may possibly drink 🍹 . I'm glad you've answered and are recovering. It's tough with three kids under ten that's my main struggle feeling terrible xx

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  • Posted

    Dear Kirsten,

    I have had everything you have presently and can give u several answers.  First, I don't know if this Patient site has a blog for NTM but if they do you'd surely get some good replies from the people suffering from NTMs.  I do know I have talked about it on this BX space but only in the context of how I got rid of mine. If there is one for NTMs you would get better answers from them since they can tell you first hand what to expect.   I did lots of reading online to learn about NTM.  

    You don't say what your NTM is.  I had gordonae and I had avium complex.  Neither one did I want treatment for because of the severity of the treatment  And gordonae was said to usually be a 'lab contaminant'. You don't say how old u are.  

    You are in the hospital from the sound of it and that's good you are because you need the antibiotics for the abscess.   I had a lung abscess but I was only 13 and I had penicillin for it and that was fine.  The bad part is that years later it has caused damage to the lungs which caused scar tissue and I'm told that leads to other things in future. I am now in my 70s. Four or five years ago I got two NTMs at two different times but they did not make me sick.  They just showed up in the sputum tests.  I joined a support group for that but found out I wasn't sick like most of them were.  I went to an Infectious Disease Dr. who actually did me a great favor and warned me about the drugs I'd have to have and she said she wouldn't take them.  So that was another warning for me.  I called the health dept.and told them about my sputum results because some of those NTMs I think have to be reported and they referred me to a National Jewish trained Dr. at a teaching hospital where I live (I'm in the US) and he just wanted more sputum tests (he said he doesn't want CT scans because they are so changeable in their results, but he loves sputum as he says he can rely on it).  I thought that was crazy but he was a specialist in NTMs and surely knew what he was talking about.  

    I was also going to a natural doctor at the time and for the NTM specifically, he put me on IVs of Vitamin C for 10 wks. As I said I did not feel sick and the IVs didn't make me feel different altho I felt maybe healthier  . they test your blood first to see how much your body can tolerate at first and then they increase it the next time. When I had my next sputum test at the end of 10 wks the NTM was gone and no pseudomonas either which I'd had show up prior to that.  (By the way I get rid of pleurisy with lots of extra c - it takes mine away in a day) That was as I said years back and I have not had an infection since - I think I had another sputum test after a year, just to see, and it was clear.  SO the NTM can colonize in your lungs but doesn't have to make u ill.

    Since u have an abscess that may not be the case with you because that is very serious and likely you'd have no way of knowing if the NTM was making you sick.

    Now you don't have much choice but to go along with their treatment and you have to get the abscess gone and that could take awhile for that.  It's too bad that they are giving u treatment for the NTM because how do you know if it was that making u sick or just the abscess?   I would have wanted to talk about it and get more opinions and I really don't know how I would handle it now that treatments have begun although I suppose one could always stop the treatment once you leave the hospital.  As you say the side effects are horrible and it's time consuming having the necessary testing several times a year and most people do not tolerate the drug regimen and get off the drugs and then get on again or try different mixes possibly only to find them not working well either.

    I think if it were me in your situation, if one is available I'd go first thing to an alternative medicine doctor or naturopath or whomever in your area deals in natural treatments and does Vic C IVs and just make an appointment and check it out asking of course what effects could be had from all the antibiotics they are now giving you, if Vit. C can be taken that closely to the Abs. etc. etc.  Lots of questions there.  I wish you much luck and just know that your hospital may not have other patients being treated for NTM but there are people outside the hospital treating themselves at home and going to Infectious Disease Doctors and as I understand it NTMs are growing here in this country.  I suppose you know you get the bacteria from water (shower heads that are old), earth, planting supplies or dirt in the ground or around water and in the air. We all are exposed to these bacteria every day but it's when they make us sick that is important to treat.    I work with plants and suspected that's where I picked mine up but can't prove it. They do say to clean your shower heads with white vinegar and kitchen drinking water - I keep my water on the hottest setting so it 'boils' away bacteria in the pipes or whatever and don't inhale steam when having a shower but keep it cool. So many things to learn.  

    Please let us know what happens and if you are able to even find out if you can have time to check out alternatives.  They sprung this on you all at once in the hospital - what a shock that is. Also - if you did get off treatment (due to some side effect) you can always later get back on again if you wanted to try something else to see how your body would react.  If you are very young I'd want to try anything else. Because the abs could weaken your immune system to where alternatives may not be able to overcome them.

    By the way, my pulm. dr. sent me right away for the antibiotics to the Inf. Dis. Dr. and he never did understand how I could refuse treatment and he never understood why it never made me sick.  I guess my body was stronger than any of us knew. He was happy later to learn that I'd done so much research on my own but being a medical doctor he just didn't understand it.

    Tabatha

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    • Posted

      Hi Tabatha

      Mine is probably not a great strain to get, it's NTM Mycobacterium avium complex, my symptoms developed slowly and have now gotten extreme, where it's colonising. I am told this strain will never be eradicated once you have it, it can be contained so it doesn't grow but could be resistant already to the medications. It is likely as my bronchieactisis is severe and my immune is low other bacteria have caused the abscess. I am only 42. Our water 💦 was tested where I live and contained this strain of NTM this is the water we showed and drink etc. I don't garden and can't remember the last time if ever I have, my husband does all this and always has. This does cause sweats fevers and weight loss etc and I lose every week despite eating regularly and above calories. I am out of hospital and have stopped medication yesterday as to still do day to day and look after three children under 10 was getting harder, Iam extremely sick without medication but just forge on but the medication doubled this and made me feel incredibly sick and only in days had affected some of my sight. I'm in contact with a mother in the USA whose son is 6 and has been battling this for two years on medication and has lost part hearing and just today got results from bronch and showed it's still positive. To be honest I'm a bit depressed about it and it's becoming difficult everyday without support and no one understands.

      Your reply helped me a lot xx

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    • Posted

      Kirstin,   please see again that I did have the avium complex.  That is the 2nd one that showed up in my sputum.  It is the more common one to get. I understand. I'm glad u stopped the antibx.   What did the hospital tell u to do?  to keep on the drugs and follow up with your dr?  Is your abscess gone now?

      With little children there is no way you would be able to do those drugs so u made the right decision for now.

      I do understand.  You need a support group you can go to if there is one close to you. DO please look up a natural doctor and just talk and if he doesn't suggest anything then YOU talk to him about what I suggested. You have to be aggressive with this.

      I stopped going to the support group because I realized if you are not sick from the NTM there is no point going there and depressing them. They look at you like you must be deceiving yourself, then you feel guilty. But you need to talk to a group a couple of times and hear everyone's story.  They can be all different as they are not all on the same drugs and have different bacteria; but you might hear something that could help you.  

      It's hard to believe you already experienced the eye problems so soon before your first exam even.  The people in the group I went to ranged from about 30 yrs old to another older lady about 70 and she's the one whose dr. said not to take the drugs because she wasn't sick either. I keep in touch with her and she is still good, as I am.  So she never had any treatment at all for hers. But both of us had the avium comlex colonizing in our lungs. we just stayed otherwise healthy I guess. Lots of supplements etc.

      For now, until u find a natural dr. increase or start taking Vitamin C in large quantities and a really good Multi Vitamin and extra B and you could go also to a health food store where they have people knowledgeable in vitamins for strengthening the immune system. You can even try if you have them where u live, the doctors that practice Indian or Chinese medicine as they have herbs and are very knowledgeable about what can help with bacteria in the lungs.  I would do all of this myself, possibly even try acupuncture ANYTHING to avoid those drugs. And if u can afford it maybe try to get someone to watch the kids while you sleep or sleep while they are at school so u can get extra rest.

      I'm also wondering right now since you are so sick if you shouldn't go on the antibiotic that others on this site with BX take, the Azithromycin and see if that doesn't help your BX and then do the hot teas and drinks and nebulizing and everything else we do (or have u been doing all that anyway) to get feeling better in one area.  There is a man on this stie who does Azithromycin (pretty sure) and he's got a serious lung bacteria, not just BX and he seems to think it helps him so if you haven't tried that one in the past for your BX talk to your Pulm dr. and see if it would be a possibility since you have little kids and cannot afford to be in the bathroom half the day and in bed the other half - and please remember I did say I had the NTM avium complex and had it not appear again (hard to understand, I know)

      Please hang in there and read these messages over and try to keep calm. OH and look up NTMs online because there are any number of good sites and there are even ones to join and read the new research.

      It's calming to read and get well informed about all of it as u don't feel so much in the dark and it sort of takes away some of the fear.  I guess you have a filter system on your drinking water now?

      If u want to know specific things let me know and I'll answer you in a Private Message if necessary.

      Tabatha

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