Atypical Mycobacterium - Alternative Treatments or Therapies?

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 am so glad to see you reaching out to the vast ATS wealth of experience and concern.

My contribution is two-fold.

First, heating vinegar until it produces fumes, about as hot as a cup of fresh coffee, and inhaling the fumes is highly effective in both helping get the sticky stuff out of lungs, opening the bronchii as the mucus is choked and coughed out, and killing infections in the lungs.

It is cheap, highly effective, no limit on how often to use it, and I can say from experience in the hospital with pneumonia, e. coli, and jaundice simultaneously that it is easier and works faster than the breathing treatments using meds. Have someone clap your back all over as you cough, to help you clear it out.

Second, a disturbing paper I recently came across, one that made me see your post and have chills:

www.ccid.org...

Good luck and good health, dear person. Keep us updated?

reply to post by CheekyRob


And here I am thinking I had a bad day. After reading your thread, it reminded me to be thankful
for the overlooked things in my life that do go right. All the things that I take for granted.
Thank you for that reminder even though this was not likely your intention. I admire your good attitude.

The underlying inherited condition (from what I have read), is the usual suspect for your troubled
immune system. This may be a shot in the dark, but have you done any research/Tests concerning your P.H.
levels. Recent studies have shown that Alkaline has an upper hand on antibiotic resistant bacteria.
Colloidial Silver has shown to have antibiotic preperties as well.

You may disagree and I know others will, but the power of faith may prove miraculous here.

You are a total stranger to me, but I want to say power to you.
No matter what you think it is worth, I will say a prayer. Thanks Again, S&F

I have posted information on this before, I'm very happy to keep spreading the word.

I use Samento, an extract of cat's claw. It is a potent antibiotic in the sense that it cranks up your immune system. I used to get colds, the flu and bronchitis at least 3 - 4 times per year. I have rheumatoid arthritis and so when I get sick, I really get sick, because my immune system is already compromised.

Samento has kept me flu, cold and bronchitis-free for over 2 years, the longest stretch I have ever had in my adult life without being ill. There used to be some really good, scientific data on the web from research done in other countries (you know, the US isn't interested in studying anything that doesn't make Big Pharma a Big Fat Profit), but they have disappeared. However, keep following the trail and you will find some fantastic information on it.

www.nutrition-health-supplements.co.uk...

It is mostly popular in the Lyme Disease community, but it is gaining a reputation as an infection-fighting superstar. It can be purchased online through several different merchants.

It will not hurt you to try it, although you may go through a Herxheimer, or "healing" reaction, if you have an active infection. I am a firm believer in it, as it has kept me out of the doctor's office and off of those nasty drugs offered by the the rheumatologist. I don't even need aspirin for my joints anymore.

I whole-heartedly believe that nature's pharmacy has better drugs than man does, but that's just my opinion. Do your own research, and draw your own conclusions.

I don't know if these suggestions are good for your condition, but they may be worth researching.

Alkalizing foods, herbs, tinctures & teas - The foods and medicines we consume contribute to our body's overall pH level. Many types of detrimental fungus and bacteria can not thrive in an alkalized body.

Xylitol - A sugar alcohol sweetener used as a naturally occurring sugar substitute. Some bacteria and fungus (ex. strep mutans & candida) can ingest xylitol but they can not metabolize it. They effective starve to death, as they cannot digest or expel the xylitol.


Limit consumption of grains.
Eliminate to the best of your ability PROCESSED grains and grain fed animals.

Look up a list of alkalinizing / acidifying foods and cross reference it to a list of Candida/anti-fungal foods.

To help your lungs, try a tincture that includes the herb Mullein, and other expectorants.

You could also try smoking a bit of mullein, followed by some intense cardio exercise. That always leaves my lungs feeling very open.

EDIT To Add: I agree with an earlier poster, you should include vinegar in your life. I like to drink Bragg's Raw Apple Cider vinegar.

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.

Hey, Sorry to hear of your issues

I also have cystic fibrosis so i can relate to some of your issues, I can offer some small advice but this is probably your standard daily routine any way.

The best thing to keep the bugs away is to reduce their enviorment which is to get rid of as much mucus as you can.

Taking Pulmozyme in a nebuliser helps break down the mucus so it easier to expell. I use a device called a lung flute to help me cough up this gunk. I find it very good and easy to use.

There is a new drug from australia which has just got eu approval called Bronchitol which helps reduce the amount of mucus build up Bronchitol

Pharmaxis' key product in development, Bronchitol, is a drug designed to reduce the amount of mucus build-up in the lungs of patients suffering from chronic respiratory conditions. Pharmaxis is developing Bronchitol for diseases including cystic fibrosis, bronchiectasis and chronic bronchitis. Bronchitol is a proprietary formulation of mannitol administered as a dry powder in a convenient hand-held inhaler. Bronchitol hydrates the lungs, helps restore normal lung clearance, and allows patients to clear mucus more effectively. Clinical studies have shown Bronchitol to be safe, effective, and well tolerated in treating patients with both cystic fibrosis and bronchiectasis.

Also here is an intersting article on a drug that reverses the lung damage caused by CF

SAHA

Lung damage caused by cystic fibrosis has been repaired by a cancer drug in a breakthrough that offers hope to tens of thousands. In tests, the drug, which was developed to treat blood cell cancers, reversed almost a third of the harm done to cells by CF. Read more: www.dailymail.co.uk...

But the one i have the most hope for all of us is stem cell - I have read various artlicles on this repairing the damage to the lungs.

Please see the below link

Regenocy te Case 1

Angelo DiStefano, 50, has struggled with the symptoms of cystic fibrosis his entire life. He was confined to a wheelchair and every breath was a challenge. DiStefano and his wife spent years researching a variety of treatments that could improve his condition. They discovered Zannos G. Grekos, MD, MAAC, FACC, chief medical officer of Regenocyte and a leading pioneer in the field of adult stem cell therapy, and worked with him to determine a new course of treatment With help from The Alliance for the Advancement of Adult Stem Cell Therapy and Research, DiStefano received his first Regenocyte adult stem cell treatment on May 4, 2011 in the Dominican Republic. Since only adult stem cells are used, the political, ethical and medical issues surrounding embryonic stem cells are avoided and there is no risk of rejection from the patient. In only a few months, his pulmonary function test (PFT) results show an increase in FEV1 from 18% to 32%, he is walking on his own, and he is able to leave the house to enjoy time with his wife.

on this

Regenocyte

I am seeing my doctor this month and i am going to ask him about Bronchitol and if he can provide this to me in my treatment. All the best for the future and i hope you find something to help

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.