Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 i have pseudomonas and it is being treated by my taking Zithromax M-W-F. probably forever. It has made SUCH a difference in my life!! I'm allergic to Cipro and the Levaquin would work and then 10 days later, I'd be sick again.Talk to your doctor.Sent from my iPadSuzanne R Brown Hi Joan, I had psa and pneumonia end of August and was on VFend for 8 months which I stopped in March. I felt great and then got sick in May. since then, I have been coughing and Primary Dr.. tried Cipro and levaquin with no improvement. She then sent me to the Infectious Disease Dr. who prescribed Biaxon with no improvement. Then on last Thursday my Sputum Culture came back and the nurse said it stated gram positive cocci and small mold. Dr. said to stop Biaxon and wants to see me this Thursday. I have been saving my sputum for another culture and today on two separate occasions, a small PINK pea size ball of mucus came up which is probably blood streaked. I called Dr.in the group that is on call today and he said he would try Avalox next which I have to relay to my Dr. in the group on Monday. Happily, I don't have to go to the hospital. On top of this, my car is leaking transmission fluid and will be picked up on Monday and taken to the dealer for repair. EILEEN - FL Subject: Re: moderator ....To: bronchiectasis Date: Sunday, July 10, 2011, 8:37 AM I too, am on cipro 1000 mg/day for 15 days, and yes psa. that is one of the best things about this group, knowing that you are not alone with this "thing". Joan, in Florida Re: moderator .... hi Annkeep your settings around 10, or 12 at highest, just try 10 minutes initially, then work up. Keep the pressure setting low - maybe on the 20 dial. I found it strange at first but quickly adapted. I avoid drink / food before using no matter how hungry, it has to come first if haven't done physio and in urgent need of. Please don't let the initial wierdness put you off, it can really help.I generally now do 20 - 30 mins, mostly 12 - 14 hz, @ 10 mins each, and maybe a 5 min on 16 if feel like have stuff not shifting, needs extra shake up. When unwell and headachey I take it easy. But as maintenance it's great, I don't end up rattling and coughing up all day and night like I used to.Being on Cipro sounds like you have our wonderful friend Pseudomonas aeruginosa (Psa - easier to write!), it's a rough one to deal with but most of us on this site have it colonised to varying degrees. If you start to get sunburn-like rashes tell your Dr straight away - I suffered agony for 7 yrs on Cipro with the rashes, sometimes agony. They stopped soon as no more Cipro. Only alternative tho is IV abx. You may have no probs though, not everyone react to meds the same way.hope this hasn't worried you more! You're on the right treatment, and having the SmartVest will be the best way to keep infection right down to a level where you don't feel unwell so much.cheers,joy h No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1388 / Virus Database: 1516/3754 - Release Date: 07/09/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 I'm so glad Dr R has helped you, Ann!Sent from my iPadSuzanne R Brown Joy H, thanks for your encouraging comments. Your advice is invaluable. Suzanne Brown, Dr. R has stayed on top of my bronch from first visit. So much more than my previous Pulm doc. I think I'm closer to being on mannitol trial. They needed print out of abx meds subscribed in the last 2 - 4 yrs. The two pharmacies I use have been cooperative and I sent on to study on Friday. I should hear from them soon. It's a double-blind study but hope I get the product and it's most helpful to us. Subject: Re: moderator ....To: bronchiectasis Date: Sunday, July 10, 2011, 8:37 AM I too, am on cipro 1000 mg/day for 15 days, and yes psa. that is one of the best things about this group, knowing that you are not alone with this "thing". Joan, in Florida Re: moderator .... hi Annkeep your settings around 10, or 12 at highest, just try 10 minutes initially, then work up. Keep the pressure setting low - maybe on the 20 dial. I found it strange at first but quickly adapted. I avoid drink / food before using no matter how hungry, it has to come first if haven't done physio and in urgent need of. Please don't let the initial wierdness put you off, it can really help.I generally now do 20 - 30 mins, mostly 12 - 14 hz, @ 10 mins each, and maybe a 5 min on 16 if feel like have stuff not shifting, needs extra shake up. When unwell and headachey I take it easy. But as maintenance it's great, I don't end up rattling and coughing up all day and night like I used to.Being on Cipro sounds like you have our wonderful friend Pseudomonas aeruginosa (Psa - easier to write!), it's a rough one to deal with but most of us on this site have it colonised to varying degrees. If you start to get sunburn-like rashes tell your Dr straight away - I suffered agony for 7 yrs on Cipro with the rashes, sometimes agony. They stopped soon as no more Cipro. Only alternative tho is IV abx. You may have no probs though, not everyone react to meds the same way.hope this hasn't worried you more! You're on the right treatment, and having the SmartVest will be the best way to keep infection right down to a level where you don't feel unwell so much.cheers,joy h No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1388 / Virus Database: 1516/3754 - Release Date: 07/09/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 Ann, I'm glad you're now seeing a gastro doctor. I had the same thing done, and discovered that I had 54 incidences of silent reflux in a 48 hr period, and was only aware of one! I'm now on Dexilant and the difference is amazing!I have a Smart Vest and you will get used to it. I had to move it up to a high speed/pressure for it to help, but then I don't weigh 103 lbs! Try wearing a sweater/sweat shirt when you do it if it really bothers you. At first, I couldn't do it with an underwired bra on or right after eating. Now, I think I could do it stark naked or wearing a corset, while eating dinner! I've had it for about 13 months now.I also use 7% inhaled saline - prescribed by Dr R - and it helps thin out the mucus. I do it at the same time as my Vest. I have them set up so I can be online at the same time - makes the 20 minutes go by SO much faster - a great distraction.Don't give up!!!Sent from my iPadSuzanne R Brown Where is everybody? The Smart Vest was delivered to me ten days ago. The trainer said it could be a week or more before I start seeing good results. At 103 lbs., my body is not sure it can take this even twice a day. Also, I made an appt with my gastro doc because the ENT doc said she couldn't help with my throat. She thought the problems are with reflux. So, my gastro doc, through a Bravo pH monitor stapled to my esophagus next Tuesday, can analyze how much GERD I'm experiencing. I've also lost weight over the last 6-8 months (at least 15 lbs.) which I hope this analysis will solve. New Pulm doc has done three sputum cultures and has me on Ciprofloxacin for two weeks for bacterial infection. WOW. I feel I'm going through so much right now. Subject: Re: moderator ....To: bronchiectasis Date: Saturday, July 9, 2011, 2:30 AM hi all,I have not been receiving ANY posts from the group for quite a few days ... usually there are 1 or 2 trickling thruif I'm somehow 'cut off' - that would mean no more applicants could be approved... gor blimey what next!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 Levaquin would work and then 10 days later, I'd be sick again......... sounds like a familiar pattern! EILEEN-FL Subject: Re: moderator ....To: bronchiectasis Date: Sunday, July 10, 2011, 8:37 AM I too, am on cipro 1000 mg/day for 15 days, and yes psa. that is one of the best things about this group, knowing that you are not alone with this "thing". Joan, in Florida Re: moderator .... hi Annkeep your settings around 10, or 12 at highest, just try 10 minutes initially, then work up. Keep the pressure setting low - maybe on the 20 dial. I found it strange at first but quickly adapted. I avoid drink / food before using no matter how hungry, it has to come first if haven't done physio and in urgent need of. Please don't let the initial wierdness put you off, it can really help.I generally now do 20 - 30 mins, mostly 12 - 14 hz, @ 10 mins each, and maybe a 5 min on 16 if feel like have stuff not shifting, needs extra shake up. When unwell and headachey I take it easy. But as maintenance it's great, I don't end up rattling and coughing up all day and night like I used to.Being on Cipro sounds like you have our wonderful friend Pseudomonas aeruginosa (Psa - easier to write!), it's a rough one to deal with but most of us on this site have it colonised to varying degrees. If you start to get sunburn-like rashes tell your Dr straight away - I suffered agony for 7 yrs on Cipro with the rashes, sometimes agony. They stopped soon as no more Cipro. Only alternative tho is IV abx. You may have no probs though, not everyone react to meds the same way.hope this hasn't worried you more! You're on the right treatment, and having the SmartVest will be the best way to keep infection right down to a level where you don't feel unwell so much.cheers,joy h No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1388 / Virus Database: 1516/3754 - Release Date: 07/09/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 Ann - I am wondering how long have you been diagnosed with Bronchiectasis? Also wondering why they did not give you the vest before? I think I have been using the vest for about 5-6 yrs. They first told me to just do it for 20 min. at a low setting twice a day. I did not have any results so I started experimenting with different levels and lengths of time. I am 124 lbs. and do the vest 2x day at 10 or 11 HZ (sometimes 12 HZ but get sore) at level 6 for an hr. each time. I usually use the Acapella in the morning when I first wake up for about 15-20 min. That seems to bring up the "stuff" that has accumulated during the night. I normally use the nebulizer about 1:00 pm using the Albuteral sulfate & Ipratropium Bromide and then do the Vest for an hr. and that brings up a lot of "stuff". In the evening before I go to bed, I will do another hr. to get whatever is left from the day. Right now I am doing real well, We have an inverter in the car so when we travel, I can plug in the Vest and be all done by the time we arrive at our destination. I only do the nebulizer once a day....I get too shakey. However, when I have an infection I use the nebulizer twice a day and will use the vest more often. This wonderful people on this website educated me on the nebulizer which I am so thankful for. I am going to talk to my dr. in Aug. about possibly doing a saline solution nebulizer as my mucus is so thick that I really need something to thin it out. The Alsbuteral & Bromide open my airways but it does nothing for thinning out the mucus. Good luck to you with the vest and all I can say is just experiment and you will find the right combination. Sharyn To: bronchiectasis Sent: Sat, July 9, 2011 7:47:37 PMSubject: Re: moderator .... Where is everybody? The Smart Vest was delivered to me ten days ago. The trainer said it could be a week or more before I start seeing good results. At 103 lbs., my body is not sure it can take this even twice a day. Also, I made an appt with my gastro doc because the ENT doc said she couldn't help with my throat. She thought the problems are with reflux. So, my gastro doc, through a Bravo pH monitor stapled to my esophagus next Tuesday, can analyze how much GERD I'm experiencing. I've also lost weight over the last 6-8 months (at least 15 lbs.) which I hope this analysis will solve. New Pulm doc has done three sputum cultures and has me on Ciprofloxacin for two weeks for bacterial infection. WOW. I feel I'm going through so much right now. Subject: Re: moderator ....To: bronchiectasis Date: Saturday, July 9, 2011, 2:30 AM hi all,I have not been receiving ANY posts from the group for quite a few days ... usually there are 1 or 2 trickling thruif I'm somehow 'cut off' - that would mean no more applicants could be approved... gor blimey what next!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Sharyn, my previous pulm doc never gave me alternatives to my meds or care other than Mucinex each day. Every appt. I would say "Dr., what's the new miracle drug to treat my disease?" He never, in eight years, had a new plan or suggested a nebulizer. I ran down my old records from the previous doc who moved and pushed him on prescribing abx each month to help with infections. He was always ready to write a 'script when I was knocked down. Then when I found this wonderful support group I would take some advice to him but he really didn't encourage other treatments. He'd say "well, if you want to try it we can get it together for you. It's up to you." He was more a lung specialist than other diseases. Thanks to Suzanne Brown who suggested a pulm doc at a large St. Louis medical school organization. I've only seen him twice now but he listened to me about the Vest and how I was really feeling. And has requested three sputum cultures to find the Psa and the right abx. I'll mention the nebulizer next appt. in October. He also questioned how I might have contracted (is that the right word?) bronch but have no idea where to place it. Thanks to everyone. Subject: Re: moderator ....To: bronchiectasis Date: Saturday, July 9, 2011, 2:30 AM hi all,I have not been receiving ANY posts from the group for quite a few days ... usually there are 1 or 2 trickling thruif I'm somehow 'cut off' - that would mean no more applicants could be approved... gor blimey what next!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 I moved up the pressure/speed with Dr R's permission. I did not do it on my own.If you're having trouble, call Dr R and tell him you need to see him before Oct.Sent from my iPadSuzanne R Brown The trainer for the Smart Vest said she set the machine per the directions of the new doc so I guess I'll make suggestions back to him in October. And it sounds like you lead with your gut and how you're feeling when you've been on the Vest for awhile. Subject: Re: moderator ....To: bronchiectasis Date: Saturday, July 9, 2011, 2:30 AM hi all,I have not been receiving ANY posts from the group for quite a few days ... usually there are 1 or 2 trickling thruif I'm somehow 'cut off' - that would mean no more applicants could be approved... gor blimey what next!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2011 Report Share Posted July 11, 2011 Thanks, Suzanne, appreciate the advice - and everybody, thanks. Subject: Re: moderator ....To: bronchiectasis Date: Saturday, July 9, 2011, 2:30 AM hi all,I have not been receiving ANY posts from the group for quite a few days ... usually there are 1 or 2 trickling thruif I'm somehow 'cut off' - that would mean no more applicants could be approved... gor blimey what next!!! Quote Link to comment Share on other sites More sharing options...
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