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The Denmark Way
- Thread starter NoExcuses
- Start date
I've heard this before. I do think it bears more research. One thing though to consider is that all countries have different mutations that are more prevalent. Although genotype alone determines phenotype, there are some mutations that consistently are associated with milder cf. I'd like to see what the most prevalent mutations are in Denmark as opposed to the US. Just my thoughts<img src="i/expressions/face-icon-small-wink.gif" border="0">
A worldwide survey found that 28,493 of 43,077 (66%) CF chromosomes have the DF508 mutation. Interestingly, the frequency of the DF508 mutation differs between populations, ranging from as low as 26% in Turkey to as high as 88% in Denmark (Tsui 1990).
This is an excerpt from this article:
<a target=_blank class=ftalternatingbarlinklarge href="http://findarticles.com/p/articles/mi_qa3659/is_199902/ai_n8832978">http://findarticles.com/p/arti.../is_199902/ai_n8832978</a>
This is an excerpt from this article:
<a target=_blank class=ftalternatingbarlinklarge href="http://findarticles.com/p/articles/mi_qa3659/is_199902/ai_n8832978">http://findarticles.com/p/arti.../is_199902/ai_n8832978</a>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>
::::::thinking before i type because my fingers wouldn't be able to type if i wasn't thinking::::::
i think your thoughts are common with most CF patients.... myself included.
which is why i posted. sometimes thinking differently about traitional means of treatment can prolong life.</end quote></div>
LOL, im glad you thought that through....LOL good one Amy <img src="i/expressions/face-icon-small-smile.gif" border="0"> ,
I asked my doctor when i was first diagnosed with cepacia if i should go on iv's every 5-6 months to keep things in check , but my doctor didnt think i needed to. Seems like i am doing that any way these days. I always believed its best to think outside the box, not just in medicine, but just about everything in my life.
::::::thinking before i type because my fingers wouldn't be able to type if i wasn't thinking::::::
i think your thoughts are common with most CF patients.... myself included.
which is why i posted. sometimes thinking differently about traitional means of treatment can prolong life.</end quote></div>
LOL, im glad you thought that through....LOL good one Amy <img src="i/expressions/face-icon-small-smile.gif" border="0"> ,
I asked my doctor when i was first diagnosed with cepacia if i should go on iv's every 5-6 months to keep things in check , but my doctor didnt think i needed to. Seems like i am doing that any way these days. I always believed its best to think outside the box, not just in medicine, but just about everything in my life.
So interesting and if it would keep my son healthiest, we would do it. Saying that, I do not think Aidan's CF doc would go for it. I even asked today about using Zithromax as a preventative antibiotic even though he has not yet cultured PA. My doc pretty much said no. He said they use other means to keep PA from colonizing with the young ones, TOBI, Colystin... although I will push for IVs at the first PA culture. Aidan has already had IV's for a month (one very long month..) for severe sinus disease. I remember being so upset that he needed a PICC at age one but now my thinking is to be aggressive and comabat anything before colonizing.
I am going to ask my doc about this one. Thanks for the info. On a good note, Aidan had clinic today and weighed over 33 pounds- not yet two years old so we were happy!Now just the wait for culture results....
Megan
I am going to ask my doc about this one. Thanks for the info. On a good note, Aidan had clinic today and weighed over 33 pounds- not yet two years old so we were happy!Now just the wait for culture results....
Megan
lightNlife
New member
That's why they call them "tune ups". When I was in
college I scheduled them around my quarterly breaks from class. I
was rarely hospitalized for the tune ups since I have a portacath
and know how to access it myself. I'm very self-sufficient with my
meds. I only resort to the hospital when I've dropped a ton of
weight or when the doc thinks there's something more serious going
on.
college I scheduled them around my quarterly breaks from class. I
was rarely hospitalized for the tune ups since I have a portacath
and know how to access it myself. I'm very self-sufficient with my
meds. I only resort to the hospital when I've dropped a ton of
weight or when the doc thinks there's something more serious going
on.
Thanks! I am trying and have learned a ton from these forums. I really try to be as positive and pro-active about this damn disease as I can. I cannot wait to hear your report after you come back from Minnesota. I am sure you and Warwick will have a great conversation- ours lasted 4 hours. We just got the 32 page report back!
Megan
Megan
my doctor wants me to do 3 monthly iv's. i agree with it. much better than the previous pathetic approach they were taking with me, ugh. i used to have 6 monthly iv's when i was at the childrens hospital regardless of how healthy i was and it worked great. i had 90%+ pfts until i was about 14 and 80%+ from 14 to 17. as soon as a moved to adult care, the regular iv's stopped and my fev1 spiralled down. a bit weird that 2 hospitals that are just a few kilometres away from each other have very different opinions, hmm. im not concerned about resistance. even if you are resistant to something it doesnt mean its not going to work. im finishing a 2 week course of tob and meropenem. im resistant to both and i was worried they wouldnt work but its worked wonders considering the hospital has neglected me for so long. staph is also treated immediately whether there are symptoms or not.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>
THE COPENHAGEN PRINCIPLES FOR TREATMENT OF BACTERIA IN CF ARE:
positive bacteria cultures are treated with antibiotics wehther there are clinical symptoms or not
-bacteria such as S. Aureus, H. Flu and intermittently colnized PA infection should be eradicated when present in the lower respiratory tract whether there are clinical symptoms or not.
-chronic PA infection, defined as persistant presence of PA for at least 6 consecutive months, or less when combined with the presence of 2 ore more precipitating antibodies agains PA, is treated with antibiotics (IV course) regularly 4 times/year whether there are clinical symptoms or not, plus daily antibiotic inhalations (in denmark this probably means colistin)
-all patients are offered daily Pulmozyme inhalation
</end quote></div>
I'm all for thinking outside of the box, but this kind of aggression on a constant basis just sounds controversial in regard to resistant. Whatever works, but....seems one who believes in this method would not believe you can become resistant. No?
I don't know which way is right, but I would worry about loosing powerful amunition when you really need it.
THE COPENHAGEN PRINCIPLES FOR TREATMENT OF BACTERIA IN CF ARE:
positive bacteria cultures are treated with antibiotics wehther there are clinical symptoms or not
-bacteria such as S. Aureus, H. Flu and intermittently colnized PA infection should be eradicated when present in the lower respiratory tract whether there are clinical symptoms or not.
-chronic PA infection, defined as persistant presence of PA for at least 6 consecutive months, or less when combined with the presence of 2 ore more precipitating antibodies agains PA, is treated with antibiotics (IV course) regularly 4 times/year whether there are clinical symptoms or not, plus daily antibiotic inhalations (in denmark this probably means colistin)
-all patients are offered daily Pulmozyme inhalation
</end quote></div>
I'm all for thinking outside of the box, but this kind of aggression on a constant basis just sounds controversial in regard to resistant. Whatever works, but....seems one who believes in this method would not believe you can become resistant. No?
I don't know which way is right, but I would worry about loosing powerful amunition when you really need it.
thelizardqueen
New member
I've heard about this as well. I've also heard that France does this as well, and that patients view their "tuneups" as a spa getaway, because they all have private rooms, they have beach front property, and are able to go swimming everyday as well. They also go in every 3 months regardless of symptoms or not.
as ive mentioned above, antibiotics can still work even if you are resistant to them. being sensitive to an antibiotic doesnt guarantee that it will work either. im usually sensitive to cipro but it does absolutely nothing! yet the iv drugs im resistant to have been able to treat some pretty shocking infections ive had. rotating the drugs can help too. also, antibiotics arent always to blame for resistance. im resistant to drugs that ive never even taken and they arent even in the same class as the drugs i currently take. this method has been done for 20 years in the childrens hospital here and no one has suffered any ill effects or had massive problems with resistance.