Pseudomonas- cipro + ?

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Aiden81

New member
Hello,
Does anyone know if there is another oral antibiotic that could be taken with cipro to increase chances of reducing PA loads? I am particularly interested to hear if anyone has used Either doxycyline or Augmentin with cipro and have had greater success with this rather than cipro alone?
I understand doxy and Augmentin do not have activity against PA but it is my understanding that certain antibotic can soentimes be more successful than monotherapy however this is not widely studied and proven so most cases of success are anecdotal. But this is good enough for me being that I am going downhill and doc will not give me IV to treat this.
I am open to natural treatments to add to cipro as well if there is any suggestions? Been on cipro for close almost 10 days and it is barely working. Only keeping things in check but not getting rid of it and not feeling better much better. Only slight improvement. Thank you.
 
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Aiden81

New member
was taking 500mg 2x a day and the last 2 days bumped it up to 500mg 3x a day. It's working a bit better at the higher dose but still it's bad. Sorry for to paint a nasty picture but layers of thick green on tongue, all down a throat and into lungs. My father had Pseudomonas about 2.5 years ago, was uncovered in a lung biopsy. Blood work was fine, normal WBC. But he was so sick the infection almost killed him. I started getting worse sick around the time he was sick and also found a 9mm lung nodule in my lungs. Sick as hell. Went to a pulminolgists in the same practice as the Pulminologist he saw and this guy blew off the nodule and all my symptoms. That was 2.5 years ago and I already problems had it about 2 years prior to that and taking many antibitocs to control it but it would keep coming back. Multiple ER visits, ID docs, ENT's and eveyone blew me off. Even after showing them green tounge, and tons of pics of green leaking out of my hands and staining gloves. All of them kept saying yeah not sure what this is. But no one even cultured and the one time I was swabbed in nasal I was on antibiotics so not suprised it came back negative. Showing them my fathers Pseuomonos biopsy report made no difference. 3 Nodules blown off As no big deal. Very traumatizing experience. Morons for docs out there and real naive. So anyway getting so sick I can barely keep my head up and breaths and back on cipro from one doc but still no one will give me IV since I don't have a fever even though I sweat profusely all night, drenching night sweats, not a little... Like absolutely soaking. Hoping the cipro works cause im on my own but I imagine I am not the only person who has gone through this kind of stuff. Medical field is full of a bunch of arrogant docs that actually no very little and naive to infections as a source of illness. All too often they are blaming autoimmune and all types of other silly stuff. Anyway seems like on my own with orals and I can only pray the cirpo works. Sorry for the rant. I can go on forever. So much frustration. Lotta ignorance out there.
Any help or advice would be greatly appreciated.
 
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Printer

Active member
That dose tells me that you are not seeing a CF Specialist. You need to see a CF Specialist, I sent you the name of the Adult CF Clinic at Columbia Univ. STOP seeing local Doctors
 
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Aiden81

New member
I'm not seeing local docs, trust me ive been all over for this. I will however look into getting another eval from a pulminologist that is a CF specialist. In the meantime, can you tell me what dose or range of dose would be considered adequate if using Cipro oral? Thanks again
 
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Printer

Active member
OMG you don't need an "eval", you need to HAVE A CF SPECIALIST as your CF DOCTOR. Or, you know what, keep doing what you are doing as it seems to be working perfectly for you.
 
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JustaCFmom

New member
Aiden81 said:
I'm not seeing local docs, trust me ive been all over for this. I will however look into getting another eval from a pulminologist that is a CF specialist. In the meantime, can you tell me what dose or range of dose would be considered adequate if using Cipro oral? Thanks again
Click to expand...

I am sorry you are having such problems. My daughter was coughing non-stop & I was taking her to a pulmonologist, who is the head of a very small CF clinic, for a very long time. I finally went to a different doctor who sent us to do a sweat test & the rest is history, as they say.

She is fighting Pseudomonas right now & actually she only took cipro for a couple of weeks. She has been on TOBI (tobramycin?) since January and they told us that that is the drug she needs. She hasn't been so good about doing her treatments & now she is going to get IVs. :-(
We could never afford this drug on our own, it is so crazy expensive. The drug manufacturers should be embarrassed.

I hope you find a solution & feel better. I am sure garlic & mega-doses of vitamin C couldn't hurt.
 
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ethan508

New member
Prescriptions for Tobi (inhaled), Cayston (inhaled), and Zithromax (oral) are all common antibiotics used to help control pseudo for CF folks. I've also used a round (14 days) of oral Cipro or oral Augmentin to keep minor colds from becoming flare-ups.

For major flare-ups (or exacerbations) you'll need to get a round of IV antibiotics coupled with increased airway clearance (often called a clean-out by CF-ers). Many people do the 'clean-out' as part of a week(s) long hospital stay but some intrepid folks manage to get an outpatient PICC line and do IV drugs themselves or with the help of a home health nurse.
 
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ethan508

New member
Oh, and I too am sorry you are dealing with such a bad hand. Hopefully you can find some medical professionals that know their stuff and can really help you out.
 
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2roses

New member
Please go see someone who specializes in CF! This sounds just awful! I'm not a doctor, but I would push for aggressive IV therapy to knock down the pseudo infection and then prophylactic antibiotics after that. You will need cultures that show what drugs will be effective on your particular bugs. Untreated pseudo causes permanent lung damage and a biofilm that makes it virtually impossible to eradicate.

Please keep us posted, and I hope you get the correct treatment that you clearly need.
 
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Printer

Active member
Gee, nobody agrees with me, that what he is doing is working perfectly. Alden81, it looks like we could be wrong.
 
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LittleLab4CF

Super Moderator
OK, I'll gladly agree, if necessary contact CFF.ORG and get the list of Adult CF Centers and doctors. Or pick one doctor or center recommended in this thread or your similar post topic "Help, Please" and go see a certified CF specialist.

Time's a waisten! Pseudo infection starts out in low concentration, a non mucoid infection. It is difficult but aggressive multiple antibiotic, multiple delivery and adjunct therapy for clearing out the mucus is all critical. When Pseudomonous colonizes and develops a biofilm, the body encases it in a fibrose scarring called a chrysalis, much like the cocoon. That biopsy of your father's was taken from a chrysalis because several infections like TB are walled off as the body's natural defense against intractable infection or objects. It would be worth a considerable number of quality years to eradicate P.a. before it changes.

Until I find the link to the most difinitive article on P.a. eradication I've seen, bring up Pseudomonous a. on Wikipedia and look at the antibiotic families with some efficacy. P.a. is a nearly incurable disease, it is resistant to nearly all antibiotics.

P.a. exists in one of 2 forms, non mucoid and mucoid. In low concentrations they act as individuals, reproducing by doubling or assexual reproduction and evolving slowly because of this. Evolution or adaptation is achieved by random mutations, mostly fatal. In this form antibiotic therapy has the best chance for eradication.

Once the environment and P.a. meet and colonize, the bacteria reach a quorum state where they change to operate cooperatively, switching on 52 genes that are normally dormant. This results in the mass production of a biofilm slime. A saccharide and algenic acid absorbs water making an alginate goo that antibiotics and our white blood cells cannot penetrate. To make matters worse the bacteria leak and absorb plasmids, little snips of genetic material that does evolve rapidly and with resistance.

TB wasn't eradicated until three families of antibiotics were discovered and somebody had the sense to administer all three. Cipro will or has killed all the Pseudomonous it is going to. Another one or two antibiotics is required, soon.

LL
 
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JustaCFmom

New member
Hi again, Since I am in the middle of dealing with this with my daughter, I figured I would share what the doctors here are doing for her. She started with Cipro (oral antibiotic) & Tobi (inhaled antibiotic) [that worked for my son 3 years ago, but she wasn't consistent enough] so *now* she is getting IVs of Amikacin (http://en.wikipedia.org/wiki/Amikacin) and Ceftazidime (http://en.wikipedia.org/wiki/Ceftazidime) They are very powerful & we hope they will be successful. You said your doctor won't do IVs, why not? If this doctor won't, maybe it is worth getting a second/third opinion. The clinic we use is very aggressive when it comes to these things. The CFF site has each CF center's statistics available for anyone to see. I would try to find the closest center with the best statistics to try & get a good plan. Good luck!
 
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