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Cystic Fibrosis Message Board


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Re: Toddler with cf
Jun 28, 2008
Hello all you wonderful people.
I wanted to give some insight, through my experiences and my research. I also want to make note that I am not a doctor. I am sharing with you my opinions and some of my evidence and findings regarding my research and experience. Nothing herein is to be construed as medical advise, but to be used as tools for your own research and opinions.

As far as the colder climate goes, I want to remind you all of something. The Cystic Fibrosis gene has been around since the Ice Age. This is not a new gene, but yet by modern times is a newly diagnosed disease. Now, having said that I want you to ponder something. Many people get diagnosed in their elder age, what does that say about either their personal genetics, or the meaning of their specific disease? They have obviously withstood the weather, they have dodged infections, and they have lived the life of a person without CF, to a ripe old age. And keep in mind, that it is not necessarily because of CF that an old person will die of pneumonia, MANY elderly people die of pneumonia, once they have been hospitalized. I believe it is more common for an elderly person to die of pneumonia than perhaps any other reason. I say that now, knowing that perhaps they have come to the hospital for other reasons, but the inhibitor is more often the cause of the pneumonia. WHAT IS PNEUMONIA?
1. Inflammation of the lungs with congestion.
2. Also called lobar pneumonia. An acute disease of the lungs, caused by the bacterium Streptococcus pneumoniae and characterized by fever, a cough with blood-tinged phlegm, and difficult breathing.

To see the definition of Streptococcus pneumoniae see: [url]http://en.wikipedia.org/wiki/Streptococcus_pneumoniae[/url]

Within that text keep in mind that: S. pneumoniae is normally found in the nasopharynx of 5-10% of [SIZE="4"]healthy adults, and 20-40% of healthy children[/SIZE]. It can be found in higher amounts in certain environments, especially those where people are spending a great deal of time in close proximity to each other (day cares, army barracks).

I have, over the years conducted an experiment myself, regarding the common cold. I have learned that, it is within the components of warmth, cold, moisture AND air flow (or consistent movement) that these bacteria's are cultivated and compound into "a cold".
For example: First lets say there are only 2 seasons within the year, Winter and Summer. When one is sleeping in the summer months where the air is warm and dry we often leave our windows open, lets say we start out without any illness. The air inside the room is generally consistant with the air outside the window. The first night of the winter, that becomes moist and cold, we are not prepared for, our windows are open, and the cold damp air flows into our face as we sleep. While we are sleeping our body temperature rises, causing the air coming out of our nose and mouth to become warmer than the flow of air going in, along with softer slower breathing. The combination is a perfect forum to grow bacteria in. We all have natural bacterias within our bodies. As the bacteria grows within the night we are continually breathing it into our throat and lungs. And it becomes a shock to us when we wake up with a cold. (Usually when we have woken up, the air is no longer as cold and wet as it was while we are sleeping and our body temperature slowing declines). The reverse is also true.
Once the change of the climate comes, the change of temperature, moisture content and air flow are also within that climate change. This is why most colds come in the Fall/Winter and Winter/Spring times. The "Common Cold" seems to disappear once the climate regulates and our breathing/body temps acclimate.

NOW, I want to also explain something else that I find to be very important!

First let me say, my son was diagnosed with CF at 10 months old. I happen to come across a group of doctors that I "THOUGHT" were good doctors, but to my discovery were NOT. These doctors had a "personal" interest (or in my opinion a "CONFLICT OF INTEREST") in diagnosing and treating my son. Later, my son had gone into the hospital for "a cold". Upon the first X-Ray, my son did NOT have Pneumonia. Once those doctors discovered that I was withholding the Enzymes because my son had adverse reactions to them, the doctors were angry. Not "slightly angry" but VERY angry. My son had NEVER had the normal symptoms of CF, his lungs were always clear, and his poop didn't smell anymore than "normal" nor was it oily. UNTIL he took the Enzymes (I did research on the Enzymes too and research before I decided to take my son off of them). The doctors refused to listen to what I had told them about the enzymes. Once I had proven my son was growing, and had become healthier off of them, they started diagnosing my son (after days in the hospital) with MRSA and Pseudomonas. Those diagnosis' were done after tests, prior, had come out negative. I learned from the nurses that MRSA is prominent within the hospitals, and that the nurses all get it when they first start working in the environment, however also become immune to it. As for Pseudomonas, let me share with you what I have learned from a well respected M.D. :

"Many if not most normal people carry Pseudomonas in their intestinal tract. When defenses are down, sometimes these organisms cause disease, but they are mostly harmless inhabitants of the human body."

Good luck in your studies. M. Blaser
______________________
Martin J. Blaser, M.D.
Frederick H. King Professor of Internal Medicine
Chairman, Department of Medicine
Professor of Microbiology
New York University School of Medicine
550 First Avenue , OBV A-606
New York, NY 10016


I am not in any way trying to mislead anyone, just that in my case, I was told many things by my son's "group of doctors" as to manipulate my thinking for their personal gain. (One of my nurse only visits was charged to my insurance as an outpatient for $20,000)

When one is told their child has CF, they are also told of the HORRIFIC possibilities or probabilities of death to your child. The trauma brings us to our knees, and our immediate response is to beg for mercy for them to 'save our child's life'. We don't even give a second thought to the possibilities of what in fact the CF Gene really is, where it generated, and HOW and or WHY it has evolved.

Take for example, BLUE EYES. Today having 'blue eyes' is not a disease, however it will only take a few researchers to discover that with 'blue eyes' a person is more susceptible to the UV rays of the sun, which in turn can cause a sensitivity to light, possibly even cancer, and ultimately be a leading cause of blindness in "old age". All I'm saying is, once research is done, and the findings are of any degree of a negative nature, regardless of how the human body has resisted, or lived with such conditions, it can now be construed as a 'disease'. And...will there ever be a cure of Blue Eyes? I just don't believe that everything has to be so complicated as the ways we are educated by clinical doctors on "THE DESEASE OF CYSTIC FIBROSIS". Just as the example given with Blue Eyes, remember that CF was only recognized in the early to mid 1900's, and the gene wasn't even discovered until 1988. Yet they believe that the gene has been in existence for some 52,000 years. Well I can imagine what the population must have been like 52,000 years ago and yet the gene has still allowed us to populate this earth. IF by the statistics, 25% of the European population are carriers, then I'd like to know how those statistics became what they are by their growth and abilities to mutate and populate in 52,000 years. WHEN did they start mutating, how and why?
In America alone 90% of the "TESTED" CF population is Delta F508. I find this interesting since by their statistics it's also the leading killer gene among CF patients. (And also remember the "medium" age is 38, that would mean that MANY PEOPLE would have had to live WELL BEYOND 38 to get that "medium" possibly even a RIPE OLD AGE, or a "normal life span". Also, what are the statistics of a "normal life span" if you add all of the variables of death inclusive). Now, lets think about something for a moment. IF DF508 is the most common of the genes, and it's the most deadly I would think that at some time, within 52,000 years, it would have either killed itself off, or learned to live with the human genetic pool. IF the gene has learned to live, then it would have also become immune to it's defects through it's evelution, one would think. What causes it to kill? Though again, I'm not a scientist, or a doctor, but a common thinking woman, I wonder how much the components of bacteria brought into a body is directly affecting the outcome and compromise of one's health (This applies in even a healthy person, not to mention CF alone).
Defects come in many forms, for several different reasons. A "defect" is defined as: "a shortcoming, fault or imperfection". WHAT are the chances mankind will not have shortcomings, faults or imperfections? And by those definitions, who is to determine what a defect is? It is defined by: "the most "average" of society".

I think that doctors, government, and pharmaceutical companies have instilled a traumatic fear in us, to control our actions, and ultimately give them control over our lives. LET ME EXPLAIN THIS ONE.

My son was diagnosed with CF 7 years ago, at 10months old. I was told he will surely die from CF. It is "this" group of clinical doctors advice to demand ALL the regimens that are given for a Critically ill and terminal person with CF (one who is in advanced stages of CF). Yet my son had no symptoms, had clear lungs, and no damages what so ever. I knew nothing about CF, nor did I discredit the doctors. I was traumatized. At that time, I did whatever they asked. When I started doing the research, I started learning things from Microbiologists, Pharmasists, people with CF and even the Cystic Fibrosis Foundation. My son's doctors didn't like that AT ALL. When I joined the CFF.. I asked the girl who was in charge of facilitating the funding for Strides for a Cure several questions. I learned about the private jets, and the porches and expensive cars, I learned about her stays at the Ritz Carlton's around the world. I saw something I didn't think was pretty. I also later questioned, why could the government find an antidote for Anthrax within 72 hours, but with BILLIONS of dollars and many many many years, they can't find a cure for Cancer, and now it's Cystic Fibrosis. Well one must look into the financial obligations in keeping the public afraid of "the death of children" more noted the fear or trauma instilled in us of OUR OWN CHILDREN's possible demise. That is enough to get us to collect money.. isn't it? (If Cancer was cured, Oncologists would be out of a job, Oncology hospitals would go out of business, and pharmasuedical companies would surely get a huge hit in the pocket, there is no insentive to any group to cure Cancer.. and now are they turning the tables to focus on CF?).

I'll make my personal story short, and just tell you this. When the doctors discovered that I knew a lot about CF and too much about the treatments, they called CPS (Child Protective Services). It is stated by another doctor that my son was not in need of the drugs and he was not in imminent danger. Yet the doctor that was angry with me, stated to CPS and I quote "If you are willing to take the child into protective custody, I will get a room at CHOC (children's hospital)". That comment has now led to several allegations that are false, and leaving me fighting for my son's security.
The CPS is another story I have educated myself on and is a deadly corrupt system, but I wont go into that... but I can tell you to please be careful when dealing with your children's health.
The doctors will take your children away, with the government’s help, if you don't "COMPLY" with their requests. SO DO YOUR HOMEWORK.. COMPILE YOUR RESEARCH AND KEEP IT ALL ON HAND.. You are not only fighting for the health of your child, but little do you know, you are also fighting for ability to raise your child without governmental interference. THOUGH CPS IS EXEMPT FOR COMPLYING WITH YOUR CONSTITUTIONAL RIGHTS.. and the doctors know this.
All I said to the social worker for the clinical doctors was "my son is having adverse reactions to the Enzymes" I begged for him to be tested.. they refused so I said "If my son dies within the next 10 years from this medication, without being tested i'll sue the F*** out of you". That's all it took to have my son taken away from me. (ok so I didn't have any couth, it was the health and love for my son that created my anger by their ignorance and refusal to test my son).
There is a bigger picture here than just dealing with a child with CF. I'm sure that there are some children that are very ill with CF, I never denied that. I just wonder why when you do your research, you only hear about the NEGITIVE aspects of CF, and NEVER hear about the positive. You never hear about how many people LIVE a full life with it, you only hear about how many die, and why they die, and the reasons they die. You never hear about the scale of severity in the disease or within the specific placement of the gene. Doctors are NOT supposed to "treat the Genotype" they are suppose to "TREAT the Patient". Meaning regardless of the severity, they are to TREAT THE SYMPTOMS. IF there are NO symptoms, then it may not be necessary to TREAT the patient but to just watch over him/her until those symptoms arise. I'm not against preventive medicine. BUT instead I need to weigh out the side effects of the treatments with the symptoms and health to find the best solution to a positive outcome.
Weigh the options, make an "Educated decision". Don't rely on everything you hear. AGAIN... KNOWLEDGE IS POWER!

Sorry for the ramblings, I hope there was something to be had out of this.

Amiablyme
(Sandra)





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