Re: Do I dare to say I'm better?

[Guest guest]

Suzanne:Inspirational story! Thank you for sharing your experience and forhopefully inspiring all of us to make sure that our physicianscare about us, and have done all that is possible for us.There are doctors/ clinics that specialize in lung issues,and as difficult as it is to get to some of them, IT IS worthit! Again, thank-you and of course, Congratulations!!-eSubject: Do I dare to say I'm better?To: bronchiectasis Date: Thursday, May 5, 2011, 8:08 AM

I almost hesitate to post this with Joy and others having such terrible problems right now. But perhaps it will bring hope to those who have lost it due to this disease.

When I changed antacid meds in Jan, my pulmonary function improved dramatically, but I still got infections when off the antibiotics. So, my pulmonologist had my allergist de-sensitize me to Zithromax (I had previously had an allergic reaction to it and had not taken it in many years). I now take it every M-W-F and will do so as long as it works.

And it works!!! I can't tell you how much better I feel!!! I'm coughing so little that my stress incontinence is nearly a thing of the past, and I have virtually no congestion in my chest. My oxygen SAT at rehab is regularly 97-98 - even hit 99 one day. I'm able to exercise at a far higher level than I have been in 18 months. I've even been able to work in the yard and have done so a few hours each day. I even skipped my Vest on Sun to see what would happen - a bit of congestion but nothing dramatic. I now know that I could probably go away for a short weekend without it, if it were more convenient to do so.

I have my life back again!!! The key to this disease is to find a doctor who is willing to keep trying until he finds the right protocol for YOU! One thing I have learned on this Forum is that what works for one, may not work for another.

But don't give up - a treatment protocol can most likely be found. I'm sure glad we found mine, even if it did take 18 months to do so!!!

Suzanne

[Guest guest]

Suzanne - this was a great email. It does give encouragement to all of us.I am so happy you are feeling like you have your life back. There is hope.

Sharyn

To: bronchiectasis Sent: Thu, May 5, 2011 7:08:23 AMSubject: Do I dare to say I'm better?

I almost hesitate to post this with Joy and others having such terrible problems right now. But perhaps it will bring hope to those who have lost it due to this disease.When I changed antacid meds in Jan, my pulmonary function improved dramatically, but I still got infections when off the antibiotics. So, my pulmonologist had my allergist de-sensitize me to Zithromax (I had previously had an allergic reaction to it and had not taken it in many years). I now take it every M-W-F and will do so as long as it works.And it works!!! I can't tell you how much better I feel!!! I'm coughing so little that my stress incontinence is nearly a thing of the past, and I have virtually no congestion in my chest. My oxygen SAT at rehab is regularly 97-98 - even hit 99 one day. I'm able to exercise at a far higher level than I have been in 18 months. I've even been able to work in the yard and have done so a few hours each day. I even skipped my Vest on

Sun to see what would happen - a bit of congestion but nothing dramatic. I now know that I could probably go away for a short weekend without it, if it were more convenient to do so.I have my life back again!!! The key to this disease is to find a doctor who is willing to keep trying until he finds the right protocol for YOU! One thing I have learned on this Forum is that what works for one, may not work for another. But don't give up - a treatment protocol can most likely be found. I'm sure glad we found mine, even if it did take 18 months to do so!!!Suzanne

[Guest guest]

How encouraging Suzanne! I'm interested in what changes to your acid refulx meds you made? What were you on before and what do you take now? My whole problem was caused by severe acid reflux and the ensuing infections it caused after the acid got into my lungs and did damage. My problems escalate every time I have an increase in acid issues. Also, it's interesting that one can be de-sensitized to an antibiotic. Two of my daughters are allergic to the penicillin family, so this would be welcome news to them.

Since reading of Joy's results from saline, and knowing how well saline nasal hold-then-rinse washes have worked for me for reducing the effects of head colds for me for rmany years I'm a confirmed believer in saline.

Kay Do I dare to say I'm better?

I almost hesitate to post this with Joy and others having such terrible problems right now. But perhaps it will bring hope to those who have lost it due to this disease.When I changed antacid meds in Jan, my pulmonary function improved dramatically, but I still got infections when off the antibiotics. So, my pulmonologist had my allergist de-sensitize me to Zithromax (I had previously had an allergic reaction to it and had not taken it in many years). I now take it every M-W-F and will do so as long as it works.And it works!!! I can't tell you how much better I feel!!! I'm coughing so little that my stress incontinence is nearly a thing of the past, and I have virtually no congestion in my chest. My oxygen SAT at rehab is regularly 97-98 - even hit 99 one day. I'm able to exercise at a far higher level than I have been in 18 months. I've even been able to work in the yard and have done so a few hours each day. I even skipped my Vest on Sun to see what would happen - a bit of congestion but nothing dramatic. I now know that I could probably go away for a short weekend without it, if it were more convenient to do so.I have my life back again!!! The key to this disease is to find a doctor who is willing to keep trying until he finds the right protocol for YOU! One thing I have learned on this Forum is that what works for one, may not work for another. But don't give up - a treatment protocol can most likely be found. I'm sure glad we found mine, even if it did take 18 months to do so!!!Suzanne

[Guest guest]

Kay, I took Protonix twice daily for years. After losing weight, I only took it

once daily. Then in July 2009, both my prescription plans quit paying for both

the name brand and the generic - told me to take OTC Prilosec. I had filled a 3

month prescription in late June just before this started. So in late Sept, I

started taking the Prilosec. It was shortly after this that my oxygen SAT rate

started dropping and not long after that, I came down with a respiratory

infection.

No one put this together (even thought I mentioned it various times to various

doctors) until in Nov 2010, my new doctor at U of Louisville Med School picked

up on this and suggested I see their new head of Gastroenterology. He did a

test in late Dec and when I saw him for the results, he told me that I had 54

incidents of reflux in a 48 hr period and I was only aware of one - it's called

" silent reflux " . He changed my meds to a prescription called Dexilant, and

within a week it (and some antibiotics), had me breathing better than I had in

over a year.

Like you, the reflux caused me to develop pseudomonas and did some damage to my

lungs (fortunately, not a lot), I will have the pseudomonas forever, but now

take the Zithromax M-W-F and that keeps it in control. If only someone would

have listened when I told them that the only thing different at that time, was a

change in my reflux meds!!!

Yes, there are many, many drugs one can be desensitized to and Zithromax is one.

It is working SO well for me - much better than the Levaquin and with no

side-effects.

I begrudge losing 18 months of my life, but at least I'm now back to where I was

before this all happened, and I can do SO much. I went to pulmonary rehab this

AM and did intensive exercise and then worked in my daughter's yard for 4 hours

afterwards. I could barely walk to the kitchen this time last year!!! I'm SO

grateful that we finally figured out what caused my downhill slide and have

pretty much fixed it!!!

Suzanne

[Guest guest]

This is amazing Suzanne! My internist started me on Prilosec prescription strength and it totally disagreed with my gun, caused pain, bloating (which I was already having a terrible time with). After a couple months of this he sent me to a GI who said (Oh no, we never start people on Prilosec, it gives them too much trouble!") He put me on once a day Protonix and I got a lot better, but by then had an infection I had never completely kicked and it continued for three or four years. Finally amoxicillin w/clavulaunic acid did the trick when I was very ill with an exacerbation and the infection finally went away, and with it the need to pound my chest, sides, and back for an hour every night to get up the small amounts of mucus that were always there making me feel bad. Never been tested for silent reflux. Weaned myself off Protonix since it's not good not to have stomach acid; used DGL, deglicyzzerized (?spelling) licorice tablets and slippery elm bark powder in my oatmeal and just w/warm water (not tasty) before eating. Of course I had to give up vinegar, most sauces, mint things, ice cream and candy (very acidic), tea, wine, mushrooms, soy sauce and salty things, soda, and for a while chocolate and a raft of other foods. It did the trick and I still use those things but can eat most things now except vinegars, candy, ice cream in very limited amounts only, tea, wine. But I can eat very dark chocolate and coffee with lots of milk, and use lemon juice and herbs for salad dressings, so I'm a happy camper! I still keep the Protonix generic on hand and at Christmas had to go back on it as I was bad and ate too much of the things I was making for my big family and our get-together ! Takes a month or two to completely get my lungs and gut back to normal, but it is so worth it that I just use discipline.

It is amazing what a difference a knowledgeable doctor or even a lay person can make with this illness. So glad you're doing a lot better.

Kay

Re: Do I dare to say I'm better?

Kay, I took Protonix twice daily for years. After losing weight, I only took it once daily. Then in July 2009, both my prescription plans quit paying for both the name brand and the generic - told me to take OTC Prilosec. I had filled a 3 month prescription in late June just before this started. So in late Sept, I started taking the Prilosec. It was shortly after this that my oxygen SAT rate started dropping and not long after that, I came down with a respiratory infection. No one put this together (even thought I mentioned it various times to various doctors) until in Nov 2010, my new doctor at U of Louisville Med School picked up on this and suggested I see their new head of Gastroenterology. He did a test in late Dec and when I saw him for the results, he told me that I had 54 incidents of reflux in a 48 hr period and I was only aware of one - it's called "silent reflux". He changed my meds to a prescription called Dexilant, and within a week it (and some antibiotics), had me breathing better than I had in over a year. Like you, the reflux caused me to develop pseudomonas and did some damage to my lungs (fortunately, not a lot), I will have the pseudomonas forever, but now take the Zithromax M-W-F and that keeps it in control. If only someone would have listened when I told them that the only thing different at that time, was a change in my reflux meds!!! Yes, there are many, many drugs one can be desensitized to and Zithromax is one. It is working SO well for me - much better than the Levaquin and with no side-effects. I begrudge losing 18 months of my life, but at least I'm now back to where I was before this all happened, and I can do SO much. I went to pulmonary rehab this AM and did intensive exercise and then worked in my daughter's yard for 4 hours afterwards. I could barely walk to the kitchen this time last year!!! I'm SO grateful that we finally figured out what caused my downhill slide and have pretty much fixed it!!!Suzanne

[Guest guest]

Forgot to mention that azythromycin is way less problematic than Levaquin. The latter has some very serious side effects, especially for older people.

Kay Re: Do I dare to say I'm better?

Kay, I took Protonix twice daily for years. After losing weight, I only took it once daily. Then in July 2009, both my prescription plans quit paying for both the name brand and the generic - told me to take OTC Prilosec. I had filled a 3 month prescription in late June just before this started. So in late Sept, I started taking the Prilosec. It was shortly after this that my oxygen SAT rate started dropping and not long after that, I came down with a respiratory infection. No one put this together (even thought I mentioned it various times to various doctors) until in Nov 2010, my new doctor at U of Louisville Med School picked up on this and suggested I see their new head of Gastroenterology. He did a test in late Dec and when I saw him for the results, he told me that I had 54 incidents of reflux in a 48 hr period and I was only aware of one - it's called "silent reflux". He changed my meds to a prescription called Dexilant, and within a week it (and some antibiotics), had me breathing better than I had in over a year. Like you, the reflux caused me to develop pseudomonas and did some damage to my lungs (fortunately, not a lot), I will have the pseudomonas forever, but now take the Zithromax M-W-F and that keeps it in control. If only someone would have listened when I told them that the only thing different at that time, was a change in my reflux meds!!! Yes, there are many, many drugs one can be desensitized to and Zithromax is one. It is working SO well for me - much better than the Levaquin and with no side-effects. I begrudge losing 18 months of my life, but at least I'm now back to where I was before this all happened, and I can do SO much. I went to pulmonary rehab this AM and did intensive exercise and then worked in my daughter's yard for 4 hours afterwards. I could barely walk to the kitchen this time last year!!! I'm SO grateful that we finally figured out what caused my downhill slide and have pretty much fixed it!!!Suzanne

[Guest guest]

Kay, while antacids are not recommended for constant use for people whose

problems are caused by " dietary indiscretion " , they are for people with acid

reflux caused by other things such as asthma etc. If there is silent

regurgitation, it can not only cause constant bronchial infections, it can also

cause Barretts esophagus, which can lead to esophageal cancer. This happened to

my own father. So, it's a trade-off with the desirability of having some acid

in the stomach.

My pulmonologist said that it is advised to test any patient with a history of

reflux for " silent reflux " . It's just a shame we waited so long to do this in

my case.

Suzanne

[Guest guest]

Yes, I had an endoscopy to look for abnormalities a couple years ago and thankfully none were found. Stress played a huge part in the beginnings of my reflux, too. Life has become much less stressful for me since then, so the reflux has settled down if I eat with a little discretion. Still, that test for silent reflux is a very good idea! At the height of my problems I also had an upper GI study, which showed only a tiny amount of regurgitation into the esophagus.

Would that surgery on the sphincter muscle help in your case?

Thanks for all your great input on this subject.

Kay Re: Do I dare to say I'm better?

Kay, while antacids are not recommended for constant use for people whose problems are caused by "dietary indiscretion", they are for people with acid reflux caused by other things such as asthma etc. If there is silent regurgitation, it can not only cause constant bronchial infections, it can also cause Barretts esophagus, which can lead to esophageal cancer. This happened to my own father. So, it's a trade-off with the desirability of having some acid in the stomach.My pulmonologist said that it is advised to test any patient with a history of reflux for "silent reflux". It's just a shame we waited so long to do this in my case. Suzanne