antibiotics and resistance, general questions from a recently diagnosed

[zamanka]

http://www.bbc.co.uk/news/health-20354536
http://www.bbc.co.uk/news/health-13005739

Just read this today and it's so scary...

We found out that my husband has Atypical Cystic Fibrosis when he was 32 and he was suffering with Pneumonia. It took 6 month for doctors to find out that he has Cystic Fibrosis. Since then (3 years) he is constantly taking different antibiotics and always developing some kind of side effects he can't live with and doctors giving him another antibiotic to try. Is it bad? I have no idea if he already has any resistant bacteria in his lungs, I can't see it in the doctor's reports. Do they usually say? Maybe it's better to always stay on one antibiotic and suffer from one side effect (for ex. acne) than keep trying different antibiotics?
Another thing is I must admit that I'm not the best wife and I'm not looking well after him, quite often he (and me) forget to take a tablet or inhale on time. I found it really hard to do it every day when you not use to and have too many other things to do during the day.
For me it's so weird that he has to take antibiotics every day for all his life now, I know that every tablet is killing his liver, good bacteria and of course bad bacteria. It just so weird, I always think that maybe he could have a break and don't take this stuff for a while?
His FEV was always good (~100%), only the last time he went for the Review and it declined quite sharply from 100% to 88%. But for us it seems to be more about our lifestyle and stress we're having. But we will see how it will be the next time.
Also I was wondering about the weather... My husband is from South America and he was living there for all his life until his 30th birthday, then he moved to England where we live now and where he possibly caught Pseudomonas bacteria and where he suffered from Pneumonia. The thing is when he is back to his country he is definitely feeling better with his health and warm climate works much better for him. We are thinking to move somewhere from here in the future, but I think it's also very important to have a good hospital? I'm not sure what to do, in England is good because they have good free hospitals, free therapy, affordable medicine and etc., but the weather is just a killer. We can move somewhere where would be better in terms of the weather, but the doctors would have no idea or very little idea about Cystic Fibrosis? It's such a big question for us (VEST) What is more important? The life expectancy rate seems to be much lower in the third countries..
Our dream is to move to LA where I suppose would be two in both, but the health system in US is a bit scary because if you don't have insurance you can die and no one will give you help?

I would be glad if someone could answer on some of my questions.. It's so life changing to find out that you have Cystic Fibrosis and your life is now always in the risk and you have to take care of it every day and that you can't live so carelessly any more...

 

[JENNYC]

Hi zamanka!! I am sorry you are in this position First thing did your husband get seen by an a CF center or just a hospital? I would advise you to find out what your husbands mutations are.....him not being diagnosed until he was 32 points to a milder mutation which could greatly benefit from the new CF drug Kalydeco. If he has the right mutation Kalydeco could turn everything around for the both of you. I would say finding out his mutations is the most important thing. Unfortunately I don't know about any of the other questions you asked...but wanted to be sure you knew about Kalydeco...for the right mutations it is an almost cure...and for some it partially works and improves overall health and lung function until the other drugs come out...which will hopefully be in 2 to 3 years. Keep your chin up and post when you find his mutations and maybe we can help you further

 

[Aboveallislove]

Ditto on what Jenny said. Re your questions: CFers are frequently on antibiotics, but they try to do on and off to prevent resistence. In the US they run the bacteria and see what it is resistent too and that is listed. Maybe you aren't seeing the full report? (if so, ask). If they aren't running resistents that's not good. Two other quick thoughts:
1) You aren't a bad wife. It is his health and he is responsible, not you for reminding. But I'm sure it is hard on him given his late diagnosis.
2) The US health care system doesn't work that way. But are you citizens so you could move? Wouldn't you purchase health insurance?? There is government health care for the poor, some states have it for CFers, and then private insurance through employers or purchased individually. LA is expensive to live, so if neither of you have the ability to work (and work permits, etc.), it would likely be cost prohibitive to move there. But if you or him have the ability (and right) to work, then you could get insurance through the employer.

 

[Printer]

I was dx at age 47, so I have some knowledge of what he is going through. I'm not a Doctor but like him (before I went to a CF Clinic) I was treated with antibiodics on a monthly basis. The first thing the CF Specialise was to stop this. You are right to be concerned about resistance. This is just plain bad and dangerous medicine.

You are wrong regarding your interpration of health care in the US. There is plenty of "free" health care here. Another option would be Canada. Toronto has one of the best CF Clinics in the world.

Bill

 

[zamanka]

Hi zamanka!! I am sorry you are in this position First thing did your husband get seen by an a CF center or just a hospital? I would advise you to find out what your husbands mutations are.....him not being diagnosed until he was 32 points to a milder mutation which could greatly benefit from the new CF drug Kalydeco. If he has the right mutation Kalydeco could turn everything around for the both of you. I would say finding out his mutations is the most important thing. Unfortunately I don't know about any of the other questions you asked...but wanted to be sure you knew about Kalydeco...for the right mutations it is an almost cure...and for some it partially works and improves overall health and lung function until the other drugs come out...which will hopefully be in 2 to 3 years. Keep your chin up and post when you find his mutations and maybe we can help you further

Thanks a lot for your reply, Jenny
I've checked about Kalydeco, it says that it's for G551D, but unfortunately my husband has a bad one - Delta F508/A334T
Any good news for this one?

 

[zamanka]

I was dx at age 47, so I have some knowledge of what he is going through. I'm not a Doctor but like him (before I went to a CF Clinic) I was treated with antibiodics on a monthly basis. The first thing the CF Specialise was to stop this. You are right to be concerned about resistance. This is just plain bad and dangerous medicine.

You are wrong regarding your interpration of health care in the US. There is plenty of "free" health care here. Another option would be Canada. Toronto has one of the best CF Clinics in the world.

Bill

Hi Bill,
but he is seen by CF Clinic since he was diagnosed...


That's what is prescribing for him at the moment:
Avamys for 3 month
Doxycycline 100mg 2 times a day
Salbutamol Inhaler (before nebuliser)
Hypertonic saline 7% (nebulised before Colomicin, to make make mucus more liquid)
Colomicin 2MU nebulised twice a day (before he was on 1MU twice a day and I'm not sure what is wrong, but after he nebulise 2MU he is coughing all the time non-stop, so I think he should continue using 1MU).
Also he never really did nebulise 2 times a day, maximum he is able to is 1 time a day in the evening...


So he is taking Doxycycline for undefined period of time (how I understood, forever), before he was on Azythromicin (had to stop due to loss of hearing), before he was on another antibiotic I can't remember the name.

Is it wrong to take antibiotics all the time?


Are you 72 and still has 100% FEV?

 

[zamanka]

Ditto on what Jenny said. Re your questions: CFers are frequently on antibiotics, but they try to do on and off to prevent resistence. In the US they run the bacteria and see what it is resistent too and that is listed. Maybe you aren't seeing the full report? (if so, ask). If they aren't running resistents that's not good. Two other quick thoughts:
1) You aren't a bad wife. It is his health and he is responsible, not you for reminding. But I'm sure it is hard on him given his late diagnosis.
2) The US health care system doesn't work that way. But are you citizens so you could move? Wouldn't you purchase health insurance?? There is government health care for the poor, some states have it for CFers, and then private insurance through employers or purchased individually. LA is expensive to live, so if neither of you have the ability to work (and work permits, etc.), it would likely be cost prohibitive to move there. But if you or him have the ability (and right) to work, then you could get insurance through the employer.

I'm a bit confused... So Cfers are not Always on antibiotics, so they do have breaks? As I said before, since my husband was diagnosed he is always, almost non-stop on antibiotics... Doctors told us this is because he has chronic Pseudomonas colonisation and tablets help to keep it from obstructing the airways... And if he wouldn't take it then the bacteria spreads all over and he will get worse and it will damage the lung tissue and etc.
I've never seen the reports with description about the resistance on different antibiotics. I guess they've done it, but I should ask about it the next time we are going there.
I forgot to say, yes, he is seen by CF clinic at the Royal Brompton Hospital in London.
Regarding US - We are thinking about different ways, but we don't know what could be the best way yet (obviously the work permit would be the best way, but I'm not sure if we will be able to get it . How much is the insurance purchased individually?

 

[Printer]

I am now 73. I am 100% pancrease insuficent. My PFT1 is 72%.

I take Doxycycline only once ever few months, (7 days only) for bacterial overgrowth.

If I were him, I would get a second opinion on the level of antibiodics that he is taking.

Bill

 

[zamanka]

I am now 73. I am 100% pancrease insuficent. My PFT1 is 72%.

I take Doxycycline only once ever few months, (7 days only) for bacterial overgrowth.

If I were him, I would get a second opinion on the level of antibiodics that he is taking.

Bill

Thanks for your reply, Bill
Have you got Pseudomonas as well?

 

[Printer]

I have had Pseudomonas but it is controlled now by nebs of sailine.

Bill

 

[zamanka]

which medicine do you nebulise?..

 

[Printer]

I am allergic to both Toby and Pulmizime so I really just neb 7% Sailine. You need to know that my CF is much different than your hubbys. I still have pretty strong lungs but my pancrease is shot. He is the reverse of that.

This disease is controlled by which 2 mutations that each of us has. I have had stomach and common duct surgery, both CF related. I have to take 10 Creon24 with each meal. So don't compair his situation to mine.

Coughing is his friend. The more he will cough, the healthier he will be.

Bill

 

[jbrandonAW]

I'm on ZERO anitbiotics. I take garlic supplements everyday and double the dose when I'm sick. ( becareful if you have problems coughing up blood since garlic thins the blood). Garlic is a natural antibiotic/antiviral. Its affective on all types of bugs, even MRSA. (drug resistant strains). Also include alot of onions and garlic in your diet.

 

[zamanka]

I am allergic to both Toby and Pulmizime so I really just neb 7% Sailine. You need to know that my CF is much different than your hubbys. I still have pretty strong lungs but my pancrease is shot. He is the reverse of that.

This disease is controlled by which 2 mutations that each of us has. I have had stomach and common duct surgery, both CF related. I have to take 10 Creon24 with each meal. So don't compair his situation to mine.

Coughing is his friend. The more he will cough, the healthier he will be.

Bill

I see. Thanks for your advices, Bill.

 

[zamanka]

I'm on ZERO anitbiotics. I take garlic supplements everyday and double the dose when I'm sick. ( becareful if you have problems coughing up blood since garlic thins the blood). Garlic is a natural antibiotic/antiviral. Its affective on all types of bugs, even MRSA. (drug resistant strains). Also include alot of onions and garlic in your diet.

Really?
But how to control nasty pseudomonas then?
We're eating quite a lot of garlic and onions, but I'm not sure if it's enough to survive?

 

[jbrandonAW]

Yea antibotics have horrible side effects on the body. I will take them is I do all my natural stuff for a week and see NO improvement, but in the last year Ive had IVs twice - but both time the doctors say my psuedo count was so low they didn't see how it was making me sick and 2 other times were orals bc the weather change gave me a nasty sinus infection that let to my chest. However I always ask for the lowest possible dose and duration - I also keep up with all my natural remidies. Garlic supplements have made my psuedo counts almost non existant as well as my staph which was so low last night they though it might have just been from sinus drainage and not my lungs. Also I have cultured MRSA since I was 16 and I haven't had one culture with it in the last year. Ive cultured many other drugs over the years and none of those have shown up either. I watch my mucus changes very closely to that at the first sign of something I start using natural remidies. You can NOT cook the garlic in order to get the antibiotic properties. You must use it raw (like juicing it) or in supplement form. However it has other properties so eating in anyway is great. There are also things like collodial silver that fight bacteria, ive not personally used it but I plan on getting some next pay check. Check out my blog www.insidecf.blogpsot.com I am all about treating my CF naturally.

 

[Aboveallislove]

I'd be very cautious in forgoing medicine for natural treatments, absent scientific evidence it works. I am not opposed, but I agree with our son's CF doctor, whose position is that if it does no harm, then it is fine to try. But that wouldn't mean foregoing proven treatments such as antibiotics. That said, it does sound like your husband's doctors are not doing standard treatment with antibiotics and that a second opinion is needed.

Re the cost of private insurance--it depends on too many factors, but it would be more expensive than insurance through an employer. Why would you not just use insurance through an employer? One of you would be working a full-time job wouldn't you to be able to afford L.A. and make a move make sense?

 

[MichaelL]

I was diagnosed at 34 and I think it took 4 to 5 months for them to figure out what was wrong with me. I remember having medicine and lung clearance to start doing daily. I believe catching pseudomonas is why my case was brought to light.

The antibiotics you take are determined based on the infections in your lungs and how your health is. TOBI is a very common and effective antibiotic used for pseudomonas. I'm surprised it's not on your list as one that you've tried. This is one that I think people often take two weeks on/two weeks off or one month on/one month off. I believe this is partially to avoid becoming resistant. It does sound to me like it would be worth getting a second opinion on what you're on.

Please don't take this a discouraging, but I am on antibiotics all the time. This is because of multiple infections that have been giving me problems in recent years.

In terms of your husband remembering to take his medicine (I agree it's primarily his responsibility), I would suggest two things:
1) I take mine to coincide with meals. I put the medicine at the table where I eat to help me remember.
2) For other medication, I set a daily alarm on my phone that reminds me.

In terms of where you live, I've heard that living on a coast is good for people with respiratory problems. The salt water gets in your lungs -- kind of like hypertonic saline -- and helps keep them clearer. I find when I go on a beach vacation, this does hold for me. I don't think this is very scientific, though.

I grew up in the US but moved to Toronto (Canada) ten years ago. I was diagnosed with CF when I was with my last US insurance company (i.e., I never had to change policies as a CF patient). I don't know a lot about pre-existing condition rules, but I would definitely be worried about them. Obama's Affordable Care Act is supposed to get rid of pre-existing condition requirements, but I don't know the timing of that.

As Bill mentions above, the Toronto adult CF centre is fantastic. Because it's a large clinic (about 400 patients), they are familiar with many of the less common cases and symptoms. I feel confident in my doctors and the entire CF care team. I've also been observed by CF doctors from other countries who come to study with the Toronto program. Toronto is a city of immigrants and I've worked with people who have moved here from the UK and South Africa. My manager at a prior job had moved from London and he felt the cost of living in Toronto was much better.

Finally, my sputum results that are done each time I visit the clinic do include information on resistance to various antibiotics.

Sorry for the long response, but hopefully this contains some useful information.

Good luck to you and your husband!

 

[Lena Bean]

I would just like to say in spite of what others on here have said. That yes that is how the Health Care system in America DOES work for some people. I've had 8 total months without insurance since becoming an adult because the County Assistance offices wouldn't put in that I moved (this happened on two occasions with two offices). Honestly, if you have a choice to NOT be in America with CF, and to be in another non-third world country. STICK WITH IT.

 

[urmysunshine54]

Ditto on what Jenny said. Re your questions: CFers are frequently on antibiotics, but they try to do on and off to prevent resistence. In the US they run the bacteria and see what it is resistent too and that is listed. Maybe you aren't seeing the full report? (if so, ask). If they aren't running resistents that's not good. Two other quick thoughts:
1) You aren't a bad wife. It is his health and he is responsible, not you for reminding. But I'm sure it is hard on him given his late diagnosis.
2) The US health care system doesn't work that way. But are you citizens so you could move? Wouldn't you purchase health insurance?? There is government health care for the poor, some states have it for CFers, and then private insurance through employers or purchased individually. LA is expensive to live, so if neither of you have the ability to work (and work permits, etc.), it would likely be cost prohibitive to move there. But if you or him have the ability (and right) to work, then you could get insurance through the employer.

I'm on 500 mg azithromycin every mon, wed, and fri for life (according to my doc). I was diagnosed about a year ago at the age of 58. I thought it was really common for CFers to be on antiobiotics for like. Should I be asking my doc any questions?