The Denmark Way

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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>

Hey thanks for the info Amy. That's pretty interesting.



You know, docs here in the west are all about resistance etc, but apparently it isn't the case if 80% of cfers in Denmark reach there 5th decade of life. I would also be concerned about kidney damage, but again, it seems like it is not the case, as long as blood levels are properly managed.



That being said, you know, the idea is great, but it isn't really fixing the underlying cause of the infection. Ok well, the underlying cause isn't really fixable right now, but the CFTR proteins do also affect some other aspects of our chemistry as well...along with our digestive problems.



A few examples are DHA, Gluthathione, NO...raising those leves helps with the inflammation and our bodies susceptibility to getting to the point where we need iv's in the first place. I wish more hospitals, patients would be more proactive in that area. Then maybe we wouldn't need the iv's in the first place.</end quote></div>

you are right, Kiel. antibiotics are just fixing the symptoms.

DHA, Gluthathione, NO do help the underlying problems. I know my clinic at USC, for one, is exploring clinical studies for Gluthathione.... they want to make sure there is a standardized dose since CFers often have absorption issues. I think we're well on our way to fixing the underlying problem as you suggested <img src="i/expressions/face-icon-small-smile.gif" border="0">

-amy
 
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Asexyblond23

New member
You said that you are on oral meds every 3 months. How does that seem to work for you. That was the question that I posted on page 2 of this forum. Can you do oral instead of iv's every 3 months for the people who cant risk going on iv's every 3 months. How long are you on the oral meds? 2 weeks, 3 weeks?
 
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princessjdc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

The CF Clinic in Tulsa treats its patients using this method also. I don't know their results though.</end quote></div>

Your talking about Tulsa Oklahoma, right? Thats where I go for my clinic visits and I have had only 2 ivs. The last two years I havent had any ivs, they only give me ivs if my pft numbers are low. Im on Tobi and Bactrim, and Ive been on them for shoot I cant remember but its been 3 or 4 years now.
 
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Asexyblond23

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

I'm going with PO antibiotics not working as well as IV's. Otherwise IV's wouldn't exist and none of us would ever be in the hospital. Quinolones work on PA, but not as well as Tobra IV.</end quote></div>

I agree they dont work as well but do they seem to help at all? See I cant take IV's every 3 months. I have to run fluids for 12 hours a day everytime I am on IV's b/c my kidneys flake off during IV's bc/ of the toxicness in the drugs and for using them for so many years. So I was wondering if you think that it helps you at all to do oral meds every 3 months. If you see a difference. Maybe that could be an option for myslef and others like me who cant do IV's every 3 months. What is Quinolones?
 
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anonymous

New member
Hi, i'm the anonymous who takes oral's every 3 months and IV's every six. I have cepacia (gen 2) as well as pseudo, but nothing else. I take cipro and cotrim for at least two weeks each (cipro 1500mg per day, cotrim 4 tablets a day (can't remember their size but this is the normal dose for cf'ers). I then see how i'm feeling and maybe do another week, dependant on the amount and colour of my sputum, my appetite, my energy levels. I've never done more than 3 weeks without feeling a LOT better.
Now, for sure the orals do not clear me out as much as the IV's....I don't get those couple of weeks of feeling fantastic and bullet proof like I do after IV's, but it does seem to stop the obvious infection.
I look at it as a stopgap between IVs. I can still live a normal life while on orals - except i can't drink coffee (cipro and caffeine equals major anxiety for me) and i have to be careful when i consume my dairy products as they inhibit absorption of the cipro, which means i invariably lose a couple of pounds in weight.
But, it means i'm only taking these orals twice a year, so resistance is unlikely and i'm only taking the IVs (Tobra and Ceftazadime) twice a year, again limiting the probability of resistance.
BTW - this was never my doctor's suggestion, this is how I decided I would manage my disease - I don't trust doctors, never have, never will. It's my body, my lungs, my decision, but interestingly they don't argue with me, they seem to like my logic.

Hope that helps.
 
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Asexyblond23

New member
Yea that does alot, thank you for sharing it with me. See I just switched to a adult clinic back in may and they put me on IV's right away b/c my numbers were down like 20%. But I got a bad batch of tobra and had an allergic realtion to it (my friend was put on tobra at the same time as me and had the same reaction to it, we got them from different states, and different pharmicies, mine in TN and hers in KY) So they put me on oral after I requested to be taken off IV's after 4 days of that ordeal and spending nights in the ER. But ever since then I dont feel that they have been aggressive. Which kind of makes me mad b/c when I got down there they were like we are a place that is aggerissive on CF. But there are 2 docs. One I like better then the other. Dr. W the one i saw first i hadent seen again untill last month. Finally 2 days ago I called in and said hey I have a cough, a temp and my cough is produtive will you please put me on sometihng, and she did. I was thrilled that they did, I actually thought they might not, how scary is that. So I want to talk to them when I go in on the 20th about this. I want to stay ontop of my health!!!
 
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anonymous

New member
You go girl, it's YOUR health and you be as pushy as you need to be to get the treatment you want. What are they gonna do - get mad at you? So what, they're not the ones lookin down the barrel of a gun everyday, that's your dubious priveledge so they must listen to you. How many patients do these doctors take care of each day - hundreds? you are just one of many to them, but you are the only you that your friends and family have, you have a vested interest in your well being, way more so than they will ever have, NEVER feel bad for demanding information or demanding better treatment or for asking for a little more of their time.
Funny you mention the tobra reaction....i reckon i'm slightly allergic to it also but my docs don't seem to believe me, like it never happens or something.

What were you and your friends symptoms when you were 'reacting' to tobra?
 
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Asexyblond23

New member
Well trust me they didnt believe me either, not sure if they do now or not. My friend started hers the day before me. She told me that night that her lips were numb. I was like well where in the hell is that comming from. The next day they started mine. By that night it felt a little weird but i dismissed it. The next day about 2 hours after my dose my lips felt numb also. After 2 days of talking with my pharmicist I told the doc and they said that it was a side effect of my aneixty meds. I said no it isnt, i have never felt this and jodi has it too, and she doesnt take anexity meds. After another day of it they took me off my other iv med, we thought it was that one causeing it. But again that night same thing happened. I would take benedryl and it helped me and jodi. So finally after 2 trips into the er i told them i just wanted off I had had enought of this and it was too much. So they aggreed to take me off. Well jodi continued on hers for another 2 days having the same feeling so she callled and told them hey my lips are still numb after they tokk her off the other med she was on too, we were on the same 2 meds. After that they took her off the tobra and no more probelms. My pharmicist said the whole time he thought it was a reaction to the tobra and not the other iv drug. He thinks that it was a bad batch by the distruibtor. This was my first time using this pharmacy down here in Ft. Campbell but Jodi used her regualr one (about an hour away from me) and we both had a reaction to it.
 
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catboogie

New member
amy-

this is so interesting. it certainly throws a kink in the old abx resistance/overuse theory. perhaps we need to learn to think about abx in a new way...

hey, have you come across any articles that tell about this denmark stuff? i did some looking and found nothing except a scientific abstract and i wasn't able to access the entire article.

thanks!

laura
 
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anonymous

New member
I am one who wishes I would have done more rounds or antibiotics in my life. I look back and see times where I pushed on without them and probably should not have. I do think if this was the normal treatment, every 3 months regardless, we would be seeing more resistent cases. Maybe we should do pfts daily at home and chart the results. If there is any downward trend over say a week and you have not been on IV's in the last 3 months or so then you do IV's.

What about Kidney and Liver issues. Would this on average cause more sideeffects?

Also, I wonder what role genetics plays. Some people may respond better to this type of treatment then others. Maybe this is cause for those in Denmark who on average have a certain genetic makeup.
 
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Scarlett81

New member
I don't do IVs every 3 months-but I do follow this method/theory-but its more like every 5 or 6 months. But a few years ago, I started doing IVs seasonally-in October, before winter, and at the end of the winter around April. I gotta tell you-this way works for me. I haven't had an actual exacerbation, meaning needing IVs b/c of infection or drop in PFTs, in 2.5 years at least. I really believe in this method, for me. And I think my doc agrees that this is the way for me to go. PFTs and the tell tale sign, and mine have gotten so much higher partly due to this I think.
The other thing is I got rid of Pseudomonas. I have'nt cultured it in 2 yrs, and the doc says that is from the Ivs. Who knows? And I'm not saying that everyone that does that will get rid of it, but it did for me.

I'm very concerned about Kidney and Liver damage. Thats' why I do seasonal cleanses as well. They seem extreme, but I've never had problems b/c of it, I feel. After I do IVs, and I feel strong enough, I do a week long Liver/kindey detox. It's kinda complicated to explain, and not everyone agrees with that stuff. But it works for me.
 
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anonymous

New member
This idea sounds great but what about the fact that we become resistant to antibiotics when using them more frequently? Becoming resistant is very scary!
 
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BoardkilL

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> This idea sounds
great but what about the fact that we become resistant to
antibiotics when using them more frequently? Becoming resistant is
very scary!</end quote></div><br>
<br>
All the scandinavian countries does it this way. I've been on IV
every three months for 18 years or so, and I'm not resistant to
them yet. The doses are thoroughly calculated, besides, most
scandinavian countries use very little antibiotics compared to
other parts of the world. Little to none in food production and so
on, also there are far less resistant bacteria in hospitals than
most other western countries.<br>
<br>
I prefer to always feel good or fairly good, rather than waiting
until I feel like crap. The sicker you get before the treatment,
the harder it is (if even possible) to get back to the shape you
used to be before the last infection.<br>
<br>
My brother has been on this regimen even longer. He's three years
younger than me, but got the first bad infections, we shared a room
as kids, and about a year later I had to start IV as well. Back
then everyone said those infections pseudo wasn't contagious... He
probably picked it up at summer camp with the 30 or so other CF
kids <img src="i/expressions/face-icon-small-wink.gif" border="0">.
 
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BoardkilL

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> This idea sounds
great but what about the fact that we become resistant to
antibiotics when using them more frequently? Becoming resistant is
very scary!</end quote></div><br>
<br>
All the scandinavian countries does it this way. I've been on IV
every three months for 18 years or so, and I'm not resistant to
them yet. The doses are thoroughly calculated, besides, most
scandinavian countries use very little antibiotics compared to
other parts of the world. Little to none in food production and so
on, also there are far less resistant bacteria in hospitals than
most other western countries.<br>
<br>
I prefer to always feel good or fairly good, rather than waiting
until I feel like crap. The sicker you get before the treatment,
the harder it is (if even possible) to get back to the shape you
used to be before the last infection.<br>
<br>
My brother has been on this regimen even longer. He's three years
younger than me, but got the first bad infections, we shared a room
as kids, and about a year later I had to start IV as well. Back
then everyone said those infections pseudo wasn't contagious... He
probably picked it up at summer camp with the 30 or so other CF
kids <img src="i/expressions/face-icon-small-wink.gif" border="0">.
 
B

BoardkilL

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> This idea sounds
great but what about the fact that we become resistant to
antibiotics when using them more frequently? Becoming resistant is
very scary!</end quote></div><br>
<br>
All the scandinavian countries does it this way. I've been on IV
every three months for 18 years or so, and I'm not resistant to
them yet. The doses are thoroughly calculated, besides, most
scandinavian countries use very little antibiotics compared to
other parts of the world. Little to none in food production and so
on, also there are far less resistant bacteria in hospitals than
most other western countries.<br>
<br>
I prefer to always feel good or fairly good, rather than waiting
until I feel like crap. The sicker you get before the treatment,
the harder it is (if even possible) to get back to the shape you
used to be before the last infection.<br>
<br>
My brother has been on this regimen even longer. He's three years
younger than me, but got the first bad infections, we shared a room
as kids, and about a year later I had to start IV as well. Back
then everyone said those infections pseudo wasn't contagious... He
probably picked it up at summer camp with the 30 or so other CF
kids <img src="i/expressions/face-icon-small-wink.gif" border="0">.
 
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