Trying to rid PA!

brianbrandi

New member
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

New member
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.
 

Printer

Active member
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
 
K

kross10911

Guest
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

New member
<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

New member
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

Active 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
 

Ratatosk

Administrator
Staff member
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

Active member
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

New member
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

New member
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

Super Moderator
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

Super Moderator
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

Super Moderator
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

Super Moderator
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

Super Moderator
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

New member
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

Super Moderator
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

New member
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/
 
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