psuedomonas aeruginosa

Hi, I'm new. I have 'pockets' in my lung from pneumonia and had bleeding and infections off and on with progressive scarring and diminished lung capacity. Many people get bacteria psuedomonas or PA from water or dirt introduced from showers, food, etc. It's an extremely common bacteria that healthy bodies manage without getting infected, but, compromised tissue can't fight off as these are tough bacteria and mutate against antibiotic drugs used against them.

I'm just comparing notes to what others with this progressive condition are experiencing and any suggestions. I just came off of Lavaquin - not sure of spelling (a quinolone drug) and no one bothered to warn me that a severe side effect is that quinolone drugs in interrupting the DNA replication of the bacteria itself (as a way to kill it) would also mess with my own DNA of joints/tendons...ended up in horrible pain in knees, hips and could barely walk. Turning my head was impaired and hurt in other joints/muscles...not good. I hear this is a rare response, but, talking just to my local WalMart pharmacist, he'd seen a couple of cases of it and one that had to be hospitalized, so, it must not be too rare. I'd been on two back to back prescriptons which did get my lungs clear for about a month, so, maybe I just had 'too much'. I'm not complaining as some people have bad reactions to drugs, but, after talking to my drs they're in agreement for me to go as well as I can without quinolone drugs (as the Drs said they're about the only ones that will slow the bacteria down) , but, if my lungs become too congested or sick I'll have to go back on quinolone drugs again. Anyone have feedback of experience on manageing this 'bug', let alone anyone ever kill this bug permanently (I was told it's unkillable). What have your drs told you to expect? Mine have 'fluffed' me with nice bedside manner and won't get me any stats on life expectancy or quality of existence. I managed to get my joints and tendons back (still are a little weak and painful, but, nothing like what they were). Thanks for input.

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Dear LindaSS:
PA sounds a lot like Mac Lung. I too have very frequent
bouts of pneumonia , treated with Lavaquin. Have had
stiffness in joints, weak muscles, etc. but not as bad as you describe. Not a lot of drugs out there for this type of
bacteria.
I too, have questioned the Docs. on life expectancy and
quality of life as well. No answer from the specialists. My
little GP, who has stood by me, tells me that there is no
info. out there on how long we will live etc. She said they simply don't know. Wishing You Luck

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Hi Gywn,
Yep, sounds like we have very similar situations. I went to the MAC site at http://www.maclungdisease.org/
and read up on it. It sounds like MAC can be cured with a long dosage of special antibiotics. PA (psuedomonas aeruginosa) could probably be treated the same way except that I have such a bad reaction to the quinolone drugs (extreme distruction of joint/tendons as it affects DNA replication - I just happen to be one of the rare ones that reacts badly in the extreme). So, I'm weighing the problem if I don't 'kill my joints/tendons' the PA may kill me. On the other hand I've survived for well over 30 years with this PA stuff with minimal antibiotics and even had my chest xray improve at one point. If I keep my muscles I can ski and play racquetball as it increases my breathing which helps the lungs stay healthier by increased lung expansion. Course, it's an all or nothing bet in either case I eventually loose. I've made the choice to live actively as long as I can and then make a last ditch effort to save myself by being an in pain cripple from the drugs I'll have to take to stay alive for a while. Then it's curtains, but, I've made it a long time and my Drs seem to feel that I have at least 10 years life expectancy left if I stay healthy in general. So, rather than be depressed I'm going to be very active and go for quality of life rather than quantity as being in the kind of pain that quinolones produce in me isn't a life worth living (and the depression of being crippled and in pain produces). If anyone has had good results beating PA, let me know, or wants to share their experience I'm glad to hear from you. Thanks for your response Gwyn, I hope you get your MAC cured as it sounds like it's a curable bug. PA I was told just lays dorment and isn't able to be completely irradicated in people like me with bronchiectasis. Well, I made it to 59 going on 60 and have a few good years left - I think that's a gift that I'm not going to mar by being bummed. Instead I'm living life with gusto. Tomorrow, I ski...(I'm not supposed to ski either because I have severe osteo, but, I'm an expert skiier and I'd rather go out doing something I love). Hard decisions, but, ones I can live or die with no regrets or fear. Ha! I do have a great life insurance policy I took out that required no medical questions - I just need to stay alive for the next two years and if the worst happens my kids can cash in on me :) I feel great living life realistically and head on. If a cure comes up for PA that won't cripple me in pain, I'll take it, but quinolone drugs if that's all that can be done (considering the extreme side effects) for me I say no thank you. Good luck and peace to all you who are dealing with chronic disease.

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Just checking in with some excellent results. From my last post on Dec 22nd where I said I've made a decision to ski (as well as having already made major dietary changes, etc) I have had astounding results (knock on wood for the superstitious side of me :), but, I can't deny how well I'm doing. Here's what has happened and what I attribute it to (I list the changes first and then the results):

First, I had changed my diet to primarily green/fruit diet and some protein as opposed to the primarily protein with little green/fruit diet.

2nd, I drink a full 8 glasses of water no excuses.

I know my blood chemistry by having inexpensive tests done to know what my minerals etc levels are. I found I was very low in vit D and have gotten my scores up to 37 and am on a Drs prescription continuing up to optimal (21 was my score, whereas 50-80 is considered optimal much below is very bad and there are many studies now pointing all sorts of disease processes having part of the problem rooted in lack of D. If you're not getting enough D through sunshine, then you have to supplement - get the test and talk to your Dr). I also significantly increased my magnesium which pretty well got rid of my fiber myalgia, muscle pain and spasms (and heart flutters).

In trying to reverse osteoporosis I started taking a good liguid vit/mineral supplement (and if you're looking for good info on how much and why the osteoporois group is a good group to check into as diet is also hugely discussed...and diet / supplements have helped my lungs...improving my chemistry has improved my general health. I have posted an explanation as to why HIGH protein isn't good for your health - it's a balance and the necessary benefits of green/fruits http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/b eyond-dispute-is-that-diet-affects-bone-health/ - if you type in the search box within this site 'diet' and 'rummage around' in general you'll find plenty of info on alkaline diet (green/fruit) and why it's important.

Then since Dec 22nd as I noted above I started skiing...and have been 7 times, and I am an experienced skier skiing hard. It expanded my lungs and increased circulation, added g force to encourage my bones to build, and coughed up a ton of crud from my lungs...a good thing (though I had to carry a lot of kleenex in my pockets). The skiing produced endorphins (and it's extremely important to stop worrying, taking on other people's problems, and stressing in any way...as it produces cortisol which is bad period...we have to find some happiness and anyone or anything that tries to budge us from our peace we need to have it/them stop. I personally simply hold up my hand and say 'hold up'. It stops a person dead in their tracks. "lower the energy or get back to me" is my explanation, or "right now isn't a good time...or I have to go to the bathroom excuse me" ,,,,I will not die for someone else's poor ability to problem solve. This is huge for me as I was loosing energy that I need to heal me.

There are many things I have done, but, this next one has been astounding for me. I found a product called green vibrance and have only taken it several days along with drinking green grass and fruit combination juice (green goddess brand is my favorite juice to combine with this product, but there's also Knudson's mega green). Anyway, the energy I get from drinking this food is amazing...and it has properties that I think are helping to heal my PA. First off, it has probiotics (and I need to add that I have added enzymes to my diet every time I eat to make sure my food is digested and then take additional enzymes to scavange up whatever debris they find in my intestines). The probiotics and enzymes are cleaning my intestines and already I have had a major reduction in chronic, strong intestinal pain that I have suffered for years. Then the antioxidents, minerals, etc from this product and my alkaline food in general is able to be absorbed better (this is an incredible health promoting food and you'd have to read up on it to get all the info). I believe this product is suppling better nuitritional health, stopping my intestine from being attacked by my immune system and supporting the immune system to attack the PA. Check out the explanation of what Green Vibrance is at http://vibrant.vibranthealth.us/gv-morefacts.html and the list of ingredients http://vibrant.vibranthealth.us/gvingredients.html as well as details http://vibrant.vibranthealth.us/gv-morefacts.html

Here's the benefits I've gotten: Magnesium as I stated has all but stopped my muscle problems. I also take formula 303 that has magnesium, valerian root and passaflora which when I'm depleted in magnesium and start to stress (anxiety and then plumetting into fatigue/depression) these little pills put the magnesium in quickly and calm me from futher reaction to stress)....they get you calm within about 15 minutes.

Next, the water moves mucus out of the lungs and moves matter in the intestines (and the magnesium moves intestinal matter also...very important especially if you have any constipation) as a sluggish intestine collects 'crud' and bacteria. I think my immune system is attacking this foreign matter and that matter is on my intestine wall...making the intestinal wall irritated and reacting with pain. With magnesium you can take as much as you like up to where it will start to give you diahea if you have more than what you need...start with 500 mg and work up to 1000 mg which is what I take each day. This is a profoundly important mineral. So, if I get the sludge off my intestinal walls with magnesium and probiotics, I cut bad bacteria and the inflamation, and increase the ability of my intestines to absord the good ingredients I'm giving it (especially the health building greens I get from the green vibrance product and my general green/fruit diet (I also get plenty of protein too, but, I'm stressing the need for the greens)...and I don't get any $ from this product, just trying to tell you about why it's been a key component of why I think I'm getting well).

Also, I take joint vibrance which is to build health of my joints, but, there's just good elements in this that could have an effect on my general health and lungs as well, but, have no ideas on this at present.

Sorry this has been such a long explanation, but, I'm on to something and had to share.

Oh, I almost forgot. I normally lie on my left side or flat on my stomach to sleep. This morning I rolled over on my back while talking to my hubby (I don't mean to be overly personal, but, we'd just made love and I think it's relevent that I'd just basically 'climbed three flights of stairs' so to speak, and then was lying on my back chatting. I started coughing up copious amounts of mucus (thank goodness my husband finds me attractive as coughing up crap certainly isn't :). Anyway, I laid on my back and coughed up everything for about 10 minutes and could breathe incredibly well...and the sputum had some greyish gunk, but, the amount was small - after that I started getting genuinely clear mucus...which I attribute to the extra water I drink flushing me out. What's important about this is that I think we need to drink a lot of water to be able to flush out our lungs and take the time to get up as much crud out of our lungs as possible. And get a ton of excercise to expand our lungs to build strength, circulation and clear out the crud.

I don't mean in anyway to be a know it all....but I don't think this is an accident...I think the things I am doing combined are working to flush out the crud that these rotten PAs live in, and thereby making it easier for bacteria eating macrophages to get at them in my lung. I'm researching and working very hard to get myself well. The healthier I get in general, through diet and excercise and lowering my stress, I have measurable results from taking specific actions that I believe is making my system capable of killing this PA in my lungs. Considering that only damaged tissues become infected, then if I get my tissues healthy I see no reason why my system won't kill the deadly bacteria considering the incredible results I'm getting.

If you have something you're doing that you're getting results with, please let's hear from you.

There is also a website chat that you can find others with PA at http://www.wisegeek.com/what-is-pseudomonas-aeruginosa.htm

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