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brianbrandi
06-19-2012, 11:22 PM
Our 6yo is still positive for PA. Since PA dx in Jan, we have done 11weeks of Tobi. Then went gluten free, dairy free, nearly sugar free, and 2weeks of inhaled colloidal silver. Also started glutathione, magnesium, and NAC during this time. Results came back today that she is still positive. Thoughts? Suggestions?

lilmac7
06-26-2012, 07:56 PM
Dunno if you'll ever get rid of it but if it works to keep the numbers down then that's a good thing. It's when the infection count gets too high that you get symptoms and feel like crap. Plus 2 weeks is hardly long enough time to judge - sure it took longer than that for her to have gotten it and for it to get to the level she has so surely it won't go away in a flash or we all would not have it anymore. Be patient and stay consistent with your efforts especially if you are seeing progress.

Havoc
06-30-2012, 12:52 PM
You need to be careful with inhaled collodial silver.

Printer
06-30-2012, 03:00 PM
Did your CF SPECIALIST tell you to go gluten free, dairy free and sugar free, etc. or are you doing this on your own? This kid is only 6 years old.

Bill

kross10911
06-30-2012, 03:42 PM
Im guessing you will never be able to get rid of the PA. Its an unfortuante reality of CF. You cant avoid it with it being in the air, water, soil ect. We just suck it up and it sticks to our lungs and it loves us so much it stays around for the rest of our existence lol.

To each their own but that is A LOT of stuff for a 6 year old to be doing. Im all about not having to do a lot of pills/IV meds and personally havent ever tried natural routes. As long as the CF docs are aware then Im sure it cant hurt to try some of those methods.

one thing ive learned from hearing about others doing natural methods, not everything works the same for every CFer .

Im not exactly sure the benefit of the dairy, sugar and gluten free method. seems like it would make it harder to get all of the nutrition needed ( unless she doesnt have issues with weight)

Good luck! I think she is lucky to have made it to 6 and just now culturing PA

lilmac7
06-30-2012, 10:58 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i> You need to be careful with inhaled collodial silver.</end quote>
Can you elaborate on this or give a link to some info? I've been trying to find all the pros and cons of it. Thanks.

AnnieT
07-01-2012, 12:05 AM
You *really* never get rid of PA. It kind of stays with you. I do not have CF, (see my signature) but I've cultured PA most of my life. Our lungs (CF or other lung disease) are a breeding ground for bacteria i.e. Psuedomonas...maintance medication was very important to me (still is)

As far as GF & DF. My brother has my disease-the drs. think we have PCD another rare lung disease, and he also has Bronch. You CAN be healthy GF & DF but this isn't going to make the PA go away. It may relieve some of her congestion (it has helped my brother).

Printer
07-01-2012, 02:17 PM
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

Ratatosk
07-02-2012, 11:45 AM
I'd be concerned as well about the inhalation of collodial silver, especially on someone so young.

As for the diet, my child is 9 and without dairy -- cheese, milk, cream, yogurt, his food options would be very limited as he derives most of his carlories from those sources.

Printer
07-02-2012, 12:17 PM
At age 72 I am REQUIRED to increase dairy to MAINTAIN bone health.

Here are two children, 6 & 8, both with CF.

By definition, fighting off failer to thrive, fat absorption problems, colon build up problems and the parents, in their wisdom, are restricting their diet at the most in opportune time in their childrens lives.

I can not beileve that any CF Doctor has approved this.

Bill

lilmac7
07-02-2012, 10:52 PM
Printer, actually I can remember back in the days of my childhood when this was the norm to limit dairy and high fatty foods out of the diet due to fear of it making the lung issues worse and also fatty foods because it allot of times cause stomach problems. Back in those years CFers with this regimen were obviously really thin and lacking nutrition and this actually compounded the lung problems probably simply due to them being so malnourished the immune system took a hit and their bodies just couldn't cope with fighting much. Back then the life expectancy was considerably lower than it is today and I even remember it being referred to as a childhood disease simply because it was rare for CFers to make it past teens. If I recall right I remember hearing it was the UK first then Canada that realized this and began doing the opposite - feeding high fat, high calorie diet and allowing dairy due to theory of the nutrients being deprived from eliminating those foods is causing more harm than good and over time their patients were fairing better and improving. Then I think once word of this got out Canada jumped on the band wagon followed by the US. My long years and years over due clinic visit in Canada back in 2002 was when I first was told contrary to the minimum to no dairy and lower fat foods thing and given a low down on the history of it. Kind of like recently with the "discovery" of hypertonic saline for hydrating the lungs/thinning the mucus - that took the observation that CF surfers in Australia were keeping their lungs in better shape than CF patients who didn't surf or do much beach water activity. Whole other topic but funny how it seems it's always some other country with some form of subsidized health care who seek alternative ways/things to improve quality/length of life for illnesses.

But yeah back on topic - I don't believe it's wise either to cut dairy from the diet for these reasons unless of course the person is allergic to it.

scarecrow
07-03-2012, 01:48 AM
I was raised on a very low fat diet. As lilmac7 said it was really the only option before enzxmes were avaliable. Yes I have always been thin but I was pretty healthy for a CFr. After my first trip to the hospital I wasn't hospitalized again for almost 20 years.

LittleLab4CF
07-03-2012, 03:00 AM
Lose the silver. I will answer your data request on why colloidal silver is harmful in a private message. I have credible scientific papers on oral injestion of colloidal silver. Just from the deductions and inductive corollaries presented in research of ingesting silver in any but minute quantities, the only remaining arguement is the weak chemical bonds that are formed in a colloid. Nature provides the mammalian world foods that are often teeming with colloids. Our biochemstry is designed to dismantle colloids. What benefit is there in introducing a substance the body has no need for. Colloidal silver is seen as a toxin sponge. It, like copper is antimicrobial, actually it becomes theoretically beneficial as long as the colloidal particles remain too large to enter the cell, instead drawing out toxins from within the cell. Assuming the toxin entered the cell whole, it can be drawn out. For some toxins, like silver chloride, it can enter and leave a cell through the cell membrane. Others are formed in the cell or join with the cytoplasm and isn't going anywhere. Colloidal silver either enters the lungs. The salty mucous dismantles the colloid and you have the basics for a black and white camera film. Game over.

I weighed in on gluten to excess in the previous two days' forums. Before going dairy free, in a 6yr old, consider buttermilk, or pasturized goats milk. This is assuming there is a reason to be DF.

LittleLab4CF
07-03-2012, 08:35 AM
I imagine you are about at wits end. I refreshed my memory of just what PA is, also why and how it works. PA (propionic acidemia) is in a family of genetically perpetrated metabolic disorders called organic acid oxidation disorders. In particular, propionic acid is normally digested by the liver as part of a chain of sequences where the liver produces useful nutrients. Digestion for the most part breaks foods down to amino acids from which the liver re-forms into useful metabolites used to fuel your cell's engine. The liver utlizes a sequence of DNA borrowed from the chromosomes to run the chain of sequences, but the DNA instructions have a break in the chain, essentially stopping the process. The instruction link is missing or garbled such that propionic acid, essentially worthless to metabolism, is produced alongside a couple byproducts also toxic and unusable as the propionic acid. Unless a related genetic disease turns up something, a "cure" is highly unlikely.

You're signature choice tells me you are a person of faith. Your post tells me you are under the care of a wholistic doctor, which often begins with leap of faith. Conventionally, you would be seeing a metabolic dissorder specialist. Unless you have found a leading specialist and exhausted all measures with him or her, consider a leap that direction, starting right now. I have some contacts that could shorten the search for a leading metabolic disorder specialist.

Your daughter has had PA from birth, she didn't just catch it. Going gluten free is not your most important strategy. Starting with gluten, it is a vegetable protein and proteins starting with meats and fish, then dairy, then nut meats, low protein grains, onto starchy and low protein veggies. I can't recall where sugars fit in, but total elimination of proteins is just as bad as too much. The body is remarkable. Other non PA processes will barely produce the Creb metabolites otherwise stopped. Almost all foods produce the missing enzyme to oxidize propionic acid. In many cases the gene is not completely worthless. A style of eating akin to grazing, or rather nibbling throughout the day on starchy low protein veggies is a sustainable lifestyle. Depending on her severity, PA can be managed. This genetic disorder directly interferes with absolutely vital metabolic fuel. A hamburger could terminally damage her liver, kidneys and brain. You donMt need somebody spraying a colloidal silver inhalant in her lungs. A top Naturpathic MD is out of her or his depth treating PA. This is one time you need a metabolic biochemist who before or after, became an MD. I have great admiration for wholistic medicine and the MD's who learned, proven or discredited the many tendrils of this medical practice. Forty some years ago, I subscribed, heck I jumped in with both feet. Older and a little wiser I utilize my Naturepathic MD as I do my neurologist or GI specialist etc. You don't go to a pharmacist during a heart attack.

LittleLab4CF
07-03-2012, 09:20 AM
I imagine you are about at wits end. I refreshed my memory of just what PA is, also why and how it works. PA (propionic acidemia) is in a family of genetically perpetrated metabolic disorders called organic acid oxidation disorders. In particular, propionic acid is normally digested by the liver as part of a chain of sequences where the liver produces useful nutrients. Digestion for the most part breaks foods down to amino acids from which the liver re-forms into useful metabolites used to fuel your cell's engine. The liver utlizes a sequence of DNA borrowed from the chromosomes to run the chain of sequences, but the DNA instructions have a break in the chain, essentially stopping the process. The instruction link is missing or garbled such that propionic acid, essentially worthless to metabolism, is produced alongside a couple byproducts also toxic and unusable as the propionic acid. Unless a related genetic disease turns up something, a "cure" is highly unlikely.

You're signature choice tells me you are a person of faith. Your post tells me you are under the care of a wholistic doctor, which often begins with leap of faith. Conventionally, you would be seeing a metabolic dissorder specialist. Unless you have found a leading specialist and exhausted all measures with him or her, consider a leap that direction, starting right now. I have some contacts that could shorten the search for a leading metabolic disorder specialist.

Your daughter has had PA from birth, she didn't just catch it. Going gluten free is not your most important strategy. Starting with gluten, it is a vegetable protein and proteins starting with meats and fish, then dairy, then nut meats, low protein grains, onto starchy and low protein veggies. I can't recall where sugars fit in, but total elimination of proteins is just as bad as too much. The body is remarkable. Other non PA processes will barely produce the Creb metabolites otherwise stopped. Almost all foods produce the missing enzyme to oxidize propionic acid. In many cases the gene is not completely worthless. A style of eating akin to grazing, or rather nibbling throughout the day on starchy low protein veggies is a sustainable lifestyle. Depending on her severity, PA can be managed. This genetic disorder directly interferes with absolutely vital metabolic fuel. A hamburger could terminally damage her liver, kidneys and brain. You donMt need somebody spraying a colloidal silver inhalant in her lungs. A top Naturpathic MD is out of her or his depth treating PA. This is one time you need a metabolic biochemist who before or after, became an MD. I have great admiration for wholistic medicine and the MD's who learned, proven or discredited the many tendrils of this medical practice. Forty some years ago, I subscribed, heck I jumped in with both feet. Older and a little wiser I utilize my Naturepathic MD as I do my neurologist or GI specialist etc. You don't go to a pharmacist during a heart attack.

LittleLab4CF
07-03-2012, 09:39 AM
Try detoxifying with activated charcoal. Start low and increase it until you and your daughter are happy. Since she has made it to 6 before the disease was noticed and diagnosed as PA, I would say she is not totally insufficient. Her age would be normally very active. Activity recycles amino acids and proteins providing the raw materials to make more propionic acid. Protein from food and protein and amino acids from exertion, a double whammy. Place your faith in God, ask doctors til you know and understand everything for and about your daughter's PA.

LittleLab4CF
07-03-2012, 11:49 AM
In the words of the late Gilda Radner, "NEVER MIND". A small detail, in the CF world of acronyms Pseudomonas a. is properly Pa. My blinders were on when another genetic mutation family uses the acronym PA. Re-reading all the posts, nutrition issues dominated a lot of posts, and all references used "PA" not noticing "PA" in many contributor's signatures. After thumbing through a dozen references on propionic acidemia, (PA) I became quite alarmed that medical malthesis had possibly occurred with a potentially dangerous and immediate bad outcome. Over my lifetime I despised the many cryptic acronym based languages I needed to learn.

I leaped without assuming the topic should be related to CF. My apologies to all whose time I wasted leading down a rabbit trail.

lilmac7
07-03-2012, 01:01 PM
LOL I just read all that and was thinking "what the heck?!" as I originally assumed she was referring to pseudomonas as PA - almost wonder if she needs to clarify that now....

LittleLab4CF - can you send me some stuff on the silver plz? I've been searching the forums for benefits/dangers but not getting much as far as what's good or bad or how to and not to take it. Thanks.

LittleLab4CF
07-04-2012, 06:02 AM
Lilmac7, I was introduced to colloidal silver over 20 years ago. My software engineer, Dan, had the same naturepathic, wholistic living endoctrination thirty years before that. Although we didn't know each other then, we learned and subcribed to a lifestyle undeniably healthier and exponentially more difficult to maintain. Cottage businesses grew out of co-ops where we found existing small ranchers and several like minded people made and sold tofu etc to organic standards. This lifestyle has continued and much of the initial knowledge and technology has gone mainstream. Dan lived and still lives 100 miles from the metropolitan city where I live. He sampled and swallowed the reasoning behind detoxification via colloidal silver. It was so new, the only analytical data available was from those who hatched the idea. Colloidal gold suspension injections were first used to treat rheumatoid arthritis before the advent of colloidal silver. I obtained research papers on colloidal gold in terms of biochemistry and compared the available research from those promoting romoting newly available silver colloids. The research on gold and silver were both seeking a toxin sponge. Both research sources were filled with data, but the assertions and assumptions avoided the 600 pound gorilla in the room. Taking both research compilations, I used colloidal gold research to dismantle the understandably biased colloidal silver research.

Dan was well aware of my abilities. In particular I am a scientific generalist, expert in all sciences, many technologies and an able analyst. Dan was no slouch and it took performing each biochemical sequence, acting on orally injested colloidal silver to prove that it quicklybroke the colloidal bonds at nearly every digestive step. Then working on the premise colloidal silver survives digestion, we tested common toxins claimed to be absorbed by colloidal silver. Very little of most common toxins dissolved the silver, leaving a host of more potent toxins.

Dan returned the remainder of the product. Wildfire spreads fast and research in both camps yielded a short lived flurry of research papers. The collection of papers including my lab notes are in storage. I made a considerable investment in time and materials, worthy of placing my work in archive. I would be delighted to retrieve and scan it for you. And living nearby at least one supplier of colloidal silver, I hope I can provide more current research. The age of my collection is sufficient and germane still. By definition, colloidal silver is not in the form of varieties. Colloids form roughly the same way and the same size. I hate to set out with the purpose of discrediting anything or anybody. But from empirical processes I have proven colloidal silver bullets poison.

The end result was Dan returning the remaining product.

epicurus
09-23-2012, 10:13 PM
Did you know that horseradish has powerful anti-pseudomonas properties? Garlic is also a powerful anti bacterial and anti viral herb.
I have had PA for nearly 30 years and am still very healthy with almost normal lung function. I find nebulised hypertonic saline invaluable to keeping my lungs clear.
Also glutathione has helped me greatly. Read more on my blog http://www.cfandhealthy.blogspot.com.au/

AnnieT
03-22-2013, 03:43 PM
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
03-25-2013, 07:12 AM
"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"

age
03-25-2013, 11:07 AM
Nebulized Glutathione will work good luck! You do need a script for it.

knowitall
03-25-2013, 04:21 PM
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
05-15-2013, 08:18 PM
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..

DmT145
05-17-2013, 06:06 PM
You can't get rid of pa..

Why would you not be able to?

Justinsmama
05-20-2013, 09:38 PM
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.

heidikk
05-21-2013, 09:09 AM
I know this is just a testimonial not medical research or anything, but I found it interesting as she specifically talks about pseudomonas. Might be worth a try? http://www.oil-testimonials.com/essential-oils/8119/child-with-cystic-fibrosis-had-pseudomonas-and-mrsa

verix
06-18-2013, 02:27 PM
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
06-19-2013, 11:02 AM
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
06-19-2013, 12:15 PM
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
06-20-2013, 12:10 PM
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

DmT145
06-25-2013, 07:06 PM
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
06-27-2013, 10:30 AM
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
12-29-2016, 07:04 PM
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! :(