Trying to rid PA!

AnnieT

New member
AnnieT:

Your brother does not have CF so digestive problems are not the same and he is NOT 6 years of age and is not depending on healthy bone growth (dairy).

Bill
Oh, I just saw this. It has helped HIM it does not mean it will help everyone.
 

emilymainzer

New member
"Pa infections in CF patients often lead to hospitalization requiring IV antipseudomonal antibiotics3,4
In a study, CF patients who became chronically infected with Pa demonstrated an increase in the rate of decline in peak FEV1 percent predicted by 2.1% (P=.004)5"
 
A

age

Guest
Nebulized Glutathione will work good luck! You do need a script for it.
 

knowitall

Banned
You don't need a script for nebulized glutathione, get a grip. KEEP IN MIND. You get rid of PA, you open yourself up to let other bacteria IN. PA isn't that bad there are much worse out there, make your decisions wisely. Bacterialy dominance is no joke. I'd rather have PA than BC, if NTM, MAC etc...
 

AnnieT

New member
You don't need a script for nebulized glutathione, get a grip. KEEP IN MIND. You get rid of PA, you open yourself up to let other bacteria IN. PA isn't that bad there are much worse out there, make your decisions wisely. Bacterialy dominance is no joke. I'd rather have PA than BC, if NTM, MAC etc...
You can't get rid of pa..
 

Justinsmama

New member
My son is GF, egg free, corn, nuts (tree and pea), beef, fish, shell fish, and pork. Frankly it stinks, but because of other health issues (eosinophilic esophagitis) we do what we have to do. He is "allergic" to milk, but because it is so important for him to maintain weight and growth, we do it anyways (as per our GI, CF and allergy doc's). His allergy is not severe. I think to eliminate these things (I have lived huge periods without them so that he is not alone and still do not eat them when he is around - most of the time unless he is asleep). It is hard and with everything else they have to go through, if there is not a clear cut benefit, we would not do it. Just an opininion from someone that has been there with the diet issues.
 

verix

New member
My son had a positive culture of PA in January. First time ever; considering that he is 10 y/o, diagnosed at 4 months old, I feel even lucky because he has been PA free for that long, I knew it was just about time to get PA, I spend endless hours reading about CF, in this forum and other sources, as a trained mom, I was alert for the next CF battle.
The Dr. prescribed TOBI to my son, (first time on inhaled antibiotic), she suggested one month on, do the culture again, one month off, and then, with the culture results back, to take a decision about a more aggressive treatment, such as 3 months on TOBI, or IV's...
Well, with the bitter news, I order the meds and, at same time, searched for non invasive, non harmful natural help. I read in this forum, I guess, something about RED CABBAGE. A study that suggested that the red pigment in red cabbage has antibiotic properties, specially to kill PA!
I started juicing the whole family twice a day with a combination of red cabbage with apple and carrot, for a sweeter taste. When Tobi arrived, my son started the monthly treatment and kept the juicing as new healthy habit. And a month later, we went back to the clinic, the ptfs went back to baseline, they take a culture, which 2 weeks later was negative. Doctor advice me, this can be a false negative, sometimes happen: Come back in a month for another culture.
Guess what? We have FOUR NEGATIVE CULTURES in a row. Dr is excited, my son surpassed his baseline from fev 85% to 96%. Five months and we still juicing... after all is a great source of vitamins for all of us... and who knows, maybe red cabbage works... at least, will not harm my son...
Please, if you find this experience interesting, please tell your doctor. I am not taking any treatment away from our CF clinic, I am just trying to add some magic from the wisdom of the kitchen. I feel that juicing red cabbage has changed our life, but, again, this may be just silly thoughts of a mom.
 

scarecrow

New member
I am happy for you and really glad to hear that you are looking for other choices besides dangerous drugs and hospital stays severasl times a year. Ask your son if he would rather drink a green shake and go play or spend 2 weeks in the hospital. I bet I know what his answer will be, and as adults we should have the same response. Hospitals are definitely better than dieing but as far as I'm concerned they're not that much better.
 

aandrwest

New member
We had just recently had the same Pa battle with our 6 yo son. He first cultured it in August of last year. After 2 rounds of IV's each followed by 8 weeks of Tobi / bactrim we were still culturing Pa. In January he was still Pa positive so we started 12 weeks of inhaled Colistin & Cipro 2x daily and finally we are Pa free since April. This has worked really well for us however I must say, it was a lot to put our son through and the Cipro was hard on his body around the 9 week mark. We felt it was worth a try and he persevered through.
 

LittleLab4CF

Super Moderator
A sick baby and your sick baby are quite different due to CF. For everything holistic you are withholding I hope you are feeding baby with mother's milk. I know too much about holistic AND conventional AMA type medicine to fall for a lot of medical fiction from both diciplines.

Hope the battle goes well,

LL
 
D

DmT145

Guest
Guess what? We have FOUR NEGATIVE CULTURES in a row. Dr is excited, my son surpassed his baseline from fev 85% to 96%. Five months and we still juicing... after all is a great source of vitamins for all of us... and who knows, maybe red cabbage works... at least, will not harm my son...
Please, if you find this experience interesting, please tell your doctor. I am not taking any treatment away from our CF clinic, I am just trying to add some magic from the wisdom of the kitchen. I feel that juicing red cabbage has changed our life, but, again, this may be just silly thoughts of a mom.
Unfortunately, your experiment is invalid, since your son was doing antibiotics at the same time as you began juicing. You have no control and therefore can't make any assessments as to which helped your son, the antibiotics, the juicing or both. It's a lot like having a headache and then taking a tylenol and an juicing. Which took away your headache? You have no way of knowing.
 

Nugget1

New member
My daughter cultured Pseudomonas for the first time ever in February of this year, she just turned 6 this past Saturday. She was put on Cipro and one course of Tobi and it was eradicated. She had another culture performed this past Monday and we are waiting for the results but are hopeful that it has not returned. She is an absolute terrible eater, gets most of her nourishment from Ensure but I would never take her off gluten or dairy. If by chance she does eat something other than "liquid" I am extremely happy. She has no allergy or sensitivity to any food so I try to keep everything in her arsenal to maintain her health.
 

Bellithorp

New member
hi all my daughter has had PA for four years! she is 8 and been on both tobi and cayston(switched after a few years). We also severely filter all water in the house for bathing and drinking and have put her on a completely new diet for a while(didn't stick due to it not showing any changes) we have also used essential oils. she is ALSO on azithromycin three times a week.

we have no idea what to do about it but we will just keep chugging away! :(
 
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