Hi everyone,

I hope you are all well. Please forgive me if this is in the wrong section.

I'm posting this really as a last resort. I've tried many things but nothing has really helped.

I am a 20 year old Cystic Fibrosis sufferer with chronic chest infections. I have a Pseodomonas Infection that's going on 12-15 years and many before that but that's not really what I am worried about at the moment, even though its multi-resistant there are still antibiotics that have an effect on it, although it doesn't eradicate it. It's kind of like cutting the grass, I take IV antibiotics every so often to cut the infection back.

The one I am worried about however is a nasty bug called Atypical Mycobacterium Abscessus and it's extremely hard to eradicate. It's a bug that's in the same family as TB but it's worse than TB.

Nontuberculous mycobacteria (NTM) are a heterogeneous group of organisms that occasionally are a primary cause of lung disease but more commonly affect patients with underlying chronic lung disease such as bronchiectasis, pneumoconiosis, or healed tuberculosis (1, 2). From an epidemiologic perspective, patients with cystic fibrosis (CF) are at high risk of NTM infection, but the clinical signs and symptoms of NTM are often difficult to distinguish from chronic bacterial pulmonary infections found in the advanced stages of CF.

Atypical mycobacteria are obligate aerobes that can be found in the environment in soil, water, vegetables, and even in domestic animals and dairy products.

The mycobacterium is resistant to nearly all antibiotics and we have tried to eradicate it with no success, the only antibiotic it is sensitive to is Tigecycline and I was only able to tolerate that for about 6-8 weeks before I went into renal failure and lost most of my hearing. The regime consisted of Doxycycline, Clarithromycin, Tigicycline and Amikacin and it didn't touch the atypical, after that I was on long term IV and oral antibiotics for almost 2 years with no success.

I have a lung function of about 23-25% at the moment and having the atypical really complicates trying to go down the transplant route. I've tried two transplant centres, the first gave me a resounding no because of the atypical mycobacterium and the other centre is concerned as it heightens the risk of fatality during a double lung transplant. I've been trying to go down the transplant route for almost two years now and time is of the essence.

I have an upcoming hospital appointment this week and it would be great if I could have some information to take up with me to discuss with the doctors. I'd probably be going up a few times over the next couple of weeks as I feel it's time for some more IV antibiotics.

I've decided to ask if anyone has any idea of things to try, are there any herbal or alternative therapies that can help? I know I probably won't eradicate it this way but anything that can help is a step in the right direction.

I've gone as far as I am probably able to go with the antibiotic side of things, I know I won't find a miracle but anything is better than noting and I'd rather try and fight it then sit back and let it take over.

I'm off to bed now as it's late here but I'll be sure to check back tomorrow.

Thanks in advance everyone, I really do appreciate it.

I can't attest to the effectiveness of anything anyone here has said, but I will say be careful and follow a basic scientific method when testing out alternative therapies - (a) you don't want to compromise your already weak system and (b) you need to know which things you're doing are effective. Try one thing at once, give it time to work, record how you feel on every level from sleep to mental acuity, etc, before moving to something else.

Also, don't forget that diet can be hugely important in your health - the more raw fruits and veggies you can add to your diet the better, especially a wide variety of. The idea of many alternative therapies really is about making your body healthier so it can fight off the disease, and that starts at the base level with making sure you get all the right nutrients.

I can't thank you enough for all your replies, I'll definitely look into everything that has been suggested.


Copperflower, is there a certain type of vinegar that you recommend? I do have some malt vinegar in the house and I can purchase some white vinegar if that's what I need instead? I'll have a look at the paper now and I will be sure to keep you all updated. Thank you for replying.

Wildmanimal, Thank you for your kind words, it's really nice knowing there are people that have ideas and want to help. I've not looked into anything regarding P.H. levels, I just did a quick look online and found out how to test the pH levels, I'll see if I can get some pH strips when I go up this week. I have some standard pH paper that I can try testing with too if that's just as good? I'll have a go at testing a bit later on and I'll post the results. It's always better to stay positive, CF and the bugs might be taking over my body but I won't let it take over my mind

FissionSurplus, Thank you for replying. I'll read up on the Samento. It sounds really promising and if it has immune system boosting properties then that's definitely a bonus. I feel the same as you do with regard to natures pharmacy. I believe there are all sorts of undiscovered antibiotics and cures in the world.

JohnnyTHSeed, Thank you for replying too, It's interesting you brought up Xylitol. Many years ago I was on a medical trial where I inhaled Xylitol into the lungs. I wasn't able to complete the trial because of the flare up of Atypical so it's definitely interesting that you mentioned it. It might be something worth looking into again. You've left me with some interesting things to think about and try.

Inannamute, You bring up some very interesting points. I'll definitely be cautious and I'll let the hospital know before I start or change anything just in case.


Again, I can't thank you all enough for the messages. You've given me some very interesting things to look into contemplate. The knowledge of ATS members never ceases to amaze me. I really do appreciate all of your help.

Have a little look at oil of oregano also.

Best of luck.

Please post regular updates - will subscribe to this thread to hear all about how you progress.