Pseudomonas still there after erradication protocol. WWYD?

CFSanDiego

New member
Hi everyone. My 5 year old still has pseudo after one month cipro/28 days of tobi. If it were you, what would you try next? We are waiting to start up Tobi again, but I am wondering if IVs should be tried.

I suspect it is up in her sinuses. She went through a a few months of continual ear infections (tubes put in) and snoring. She has also been putting her fingers in her mouth constantly since september. And, her fev1 at the last clinic visit was 140.

What if she can't get rid of this? Is it a definite sentence to severely reduced lung function? Or can she maintain it?

Thanks in advance for your advice,

Edan.
 

Melissa75

Administrator
Not a medical professional here. I think I wouldn't push for IVs. Completely anecdotally, I feel like I started culturing stenotrophomonas as a result of being bombarded with a specific class of antibiotics for other stuff I was culturing. I do think erradication is worth trying. I think studies show that countries that do it, have better outcomes than ones that don't. It's just that I also see some risk to it, especially if the patient is doing well anyway. Does your daughter do nasal washes? My son was 6 when I got him to do them-pollen allergy. Can she get an antibiotic wash if you think her sinuses are the source?
I think that awesome 140% can be maintained. Is she very active? That, imo, will help her keep those numbers.
 

CFSanDiego

New member
Thanks Melissa. I know, I am afraid all of the antibiotics that she has been on in the first place are what's causing all of these new bugs. It is so difficult to navigate these waters.

Edan.
 

CFSanDiego

New member
oh, and she does do nasal rinses, 2x/day. She is also very active....monkey bars at school, gymnastics, judo, walk/run to school every day.
 

Melissa75

Administrator
It IS so complicated. I hope you get more replies.
That's great she is so active. Mastering the monkey bars at five is advanced!
 

keefer11

New member
Does she have any symptoms still after attempting to eradicate it? Like coughing, congestion, etc?

Personally, I had pseudomonas for at least 15 years before I went on IVs for it. I think my doctor figured if I wasn't having any symptoms from it, why put my body through IVs? Sure, I was on Cipro from time to time if I was beginning to feel more congested, but my doctor didn't put me through IVs until absolutely necessary, which was when I was 21ish.

The pseudomonas probably is in her sinuses, that's where my bacteria likes to hang out. Unfortunately. Neither of my doctors(ENT or pulmonologist) would ever put me on IVs for my sinuses, I don't think they believe it is worth it on the body & like to save it until i really need it. Going on IVs is probably pretty traumatic for a 5 year old, it was for me, when I was in my 20s.

I don't think my family tried eradicating it when I was little, but like I said I was healthy even with pseudomonas. It wasn't until i got MRSA that i started to have more issues, but everyone is different. If it was me I would hold off IVs until necessary. But, I don't have eradication experience.
 

epicurus

New member
Hi Edan, Pseudo can be very persistent unfortunately. I started culturing it at 13 but didn't require I-V's until I was around 20. You can be healthy with it there in the background and just treat with cipro if it flares up. A course of LGG probiotics would be useful to replace all the healthy gut bacteria lost through antibiotics and strengthen the immune system. Garlic and oregano are powerful natural anti-pseudomonals.
 

LittleLab4CF

Super Moderator
I think this is the kind of desperation that drives sketchy holistic antimicobials like colloidal silver. This, and anything not in conventional treatments should not distract you just yet. Antibiotics and narcotics are under the influence of the latest medical fashion. Not to be cruel, but these and other medicines wag from the eye dropper to funnel and back every few years. I call it fashion because it will change by Spring or such.

Treating anybody with two or more antibiotics concomitantly is a huge medical compromise and is very hard to commit to for someone as young as 5. In trying to control a microbial infection like Pa they killed all that was not resistant to the antibiotic. More of the same is worth the try but I assume your CF specialist is up to speed and multiple antibiotic resistant (MR or MDR) bacteria. Her infection is drug resistant by your description and most likely the doctor knows it too. MAT or multiple antibiotic therapy should follow next. Cipro is generally well tolerated and lethal to Pseudomonous. Generally, being the operative word here as it tears others up, and not always lethal anymore.

Do a course of IV MAT if you must, but you will have to advocate to do so. That is a guess but it has frightening potential beyond your one child. MDR microbes come from botched antibiotic protocols most times. It isn't that doctors are dumb but rather the problems are that complex. The first veil has been dropped by an incomplete eradication. At 28 days, anything simply killed has been and what remains is no longer being killed and therfore resists Cipro. The ones that were are still killed by Cipro can grow back and she will again need Cipro. The doctor's failure to culture and identify the resistant Pa has just made a super-bug and your daughter may be the first to see just how super it will be. Hopefully not but this shows just how smart everybody in your team has to be.

Albeit very easy to culture and identify our respiratory system has some of just about every bug in some concentration. The one to treat may not be the right bug when you are trying to eliminate a dozen possible pathogens. I am old and educated to a point where I call my doctor and tell him what antibiotic protocol I want to run with which antibiotic or MAT choices will most likely work. I also isolate myself if needed and insure I don't vector an MDR bug. Each new superbug endangers the whole human population and threatens to kill immunocompromized people like us. Done right for a particular MDR bug MAT is the correct protocol. A disease specialist is a good source to seek that second opinion as doctors unfamiliar or just cautious aren't necessarily the best right now.

LL
 

occupyjapan

New member
Depending on your doctor, it can take several attempts at eradication before your doctor feels like the PA has colonized his lungs for good. My doctor's protocol is to start eradication therapy (generally inhaled Tobi + Cipro + Azithromycin) after the first culture, repeat the culture after a month, if PA shows up again, do another round of eradication therapy, test again, if still present do one final attempt at eradication. If you still culture PA at that point, he starts suppression therapy (28 day rotation of two different antibiotics).

Your doctor may vary, of course, but I doubt he'll give up after one attempt.
 

occupyjapan

New member
I think this is the kind of desperation that drives sketchy holistic antimicobials like colloidal silver. This, and anything not in conventional treatments should not distract you just yet. Antibiotics and narcotics are under the influence of the latest medical fashion. Not to be cruel, but these and other medicines wag from the eye dropper to funnel and back every few years. I call it fashion because it will change by Spring or such.

Treating anybody with two or more antibiotics concomitantly is a huge medical compromise and is very hard to commit to for someone as young as 5. In trying to control a microbial infection like Pa they killed all that was not resistant to the antibiotic. More of the same is worth the try but I assume your CF specialist is up to speed and multiple antibiotic resistant (MR or MDR) bacteria. Her infection is drug resistant by your description and most likely the doctor knows it too. MAT or multiple antibiotic therapy should follow next. Cipro is generally well tolerated and lethal to Pseudomonous. Generally, being the operative word here as it tears others up, and not always lethal anymore.

Do a course of IV MAT if you must, but you will have to advocate to do so. That is a guess but it has frightening potential beyond your one child. MDR microbes come from botched antibiotic protocols most times. It isn't that doctors are dumb but rather the problems are that complex. The first veil has been dropped by an incomplete eradication. At 28 days, anything simply killed has been and what remains is no longer being killed and therfore resists Cipro. The ones that were are still killed by Cipro can grow back and she will again need Cipro. The doctor's failure to culture and identify the resistant Pa has just made a super-bug and your daughter may be the first to see just how super it will be. Hopefully not but this shows just how smart everybody in your team has to be.

Albeit very easy to culture and identify our respiratory system has some of just about every bug in some concentration. The one to treat may not be the right bug when you are trying to eliminate a dozen possible pathogens. I am old and educated to a point where I call my doctor and tell him what antibiotic protocol I want to run with which antibiotic or MAT choices will most likely work. I also isolate myself if needed and insure I don't vector an MDR bug. Each new superbug endangers the whole human population and threatens to kill immunocompromized people like us. Done right for a particular MDR bug MAT is the correct protocol. A disease specialist is a good source to seek that second opinion as doctors unfamiliar or just cautious aren't necessarily the best right now.

LL

A lot of good in this post! However, I must say, that it isn't so simple as "everything alive after 28 days is resistant". Rather, they may be intermediate resistant or simply require higher, prolonged exposure to the antibiotics in order to eradicate. Cipro and Tobi do kill PA effectively, but they aren't exactly Meropenem or some "hardcore" IV antibiotic. Most doctors do repeated attempts at eradication for this reason, with a culture between each. When I started culturing PA (when I was 16 or so), I got a culture done after every eradication attempt and they all showed the PA as being sensitive to the antibiotics given even though the overall attempt at eradication was unsuccessful.

Heck, to this day, my PA is still sensitive to Tobi and Cipro. Azithro, too, but I'm not on it regularly. PA is tricky. Eradication may fail for many reasons, such as repeated exposure or the PA forming biofilms very shortly after entering the lungs. To the original poster: That is what leads to colonization, by the way. Once there are biofilms, it's basically impossible to get rid of PA, since there are always some bacteria "cocooned away" in the film that aren't being exposed to the antibiotics, since they don't penetrate the films pretty much at all. However, one failed attempt at eradicating PA doesn't mean it's there to stay necessarily. I mean, yeah, ideally you'd like it to be knocked out after the first attempt, but most doctors make at least a subsequent attempt and my understanding is that 3 successive cultures with PA is when it's time to start suppressing them rather than trying to eradicate.
 

LittleLab4CF

Super Moderator
Thank you Occupyjapan for the added contribution. Everything you said is spot on including my 28 days. I was trying to help the less initiated, understand the back story behind a CF child's unresolved infection. Not to be confusing I spoke in generalities just to keep my thoughts flowing. For every "absolute" in life a fool is made. It is not simple and what I was hoping to do is help exlain bugs bad to the bone in story form.

Your added clarity shows I missed impressing my point and will endeavor to eschew obfuscation. It might help to understand why bugs are so hard to get antibiotics through mucus thick with infection. Neccesarrily, antibiotics pass through the blood stream. Getting from a mucosal capillary through a layer of mucus and to the bacteria is like throwing rocks at a target beyond the range of your pitch. The antibiotic molecules are hand to hand fighters and kill best at close quarters. To that end the rock analogy implies an amount of antibiotic rocks are bouncing onto the target, and it can take a lot of rocks and too much time it seems.

I probably erred in not saying more or being more careful not to be mistaken for an "absolute" fool. I wish somebody would have caught another mistake. I meant to say an infectious disease specialist (IFDS). I spent twelve years of my life traveling where most infections the rest of world carries, are unfamiliar to anyone except an IFDS. The first Teel worm I blew out my nose nobody had a clue where it came from or if there were more. My worm aquainted me with the specialty.

Thanks for the correction,

LL
 

LittleLab4CF

Super Moderator
Heck, to this day, my PA is still sensitive to Tobi and Cipro. Azithro, too, but I'm not on it regularly. PA is tricky. Eradication may fail for many reasons, such as repeated exposure or the PA forming biofilms very shortly after entering the lungs. To the original poster: That is what leads to colonization, by the way. Once there are biofilms, it's basically impossible to get rid of PA, since there are always some bacteria "cocooned away" in the film that aren't being exposed to the antibiotics, since they don't penetrate the films pretty much at all. However, one failed attempt at eradicating PA doesn't mean it's there to stay necessarily. I mean, yeah, ideally you'd like it to be knocked out after the first attempt, but most doctors make at least a subsequent attempt and my understanding is that 3 successive cultures with PA is when it's time to start suppressing them rather than trying to eradicate.

And a biofilm is? I think I know which bio-film you are referring to but there are more than one to penetrate sometimes. If you could explain more, it would be very helpful.

My favorite biofilm is a kind of chitin or bug shell material. The same material forming the exoskeleton on a beetle delayed the discovery of tuberculosis. This isn't necessarily the bio-film to be further explained but chitin armors the bacillus that is TB and Gram's staining will not penetrate its shell. Niether was anything else stainig or otherwise making it visable under a microscope. Robert Koch, the father of microbiology, left his dirty dishes, and reagents open over a short holiday. Another fall in crap, come out smelling like a rose discovery that changed the world. One common reagent in a bug growers arsenal then was carbolic acid, killer of everything. It didn't kill the TB bacillus but etched away their armor. Koch stained some of this leftover mess and beauty of beauties it was there. The bacteria with incomplete shells revealed the chitin stealth structure. This little bio-film protected the biggest bacterial killer of people ever. TB carbuncles or chrysalis inside Egyptian mummies are common in the spine and bones as well as bog mummies' lungs. Six thousand years ago nearly everybody had TB and most eventually succumbed.

No single antibiotic fully kills all TB because of this bio-film. Penicillin hardly touches it and as far as I know has never been used in a drug therapy eradicating TB. At first there was just one antibiotic type, sulfa based antibiotics came before discovering the battle between different microbe families likes yeasts, bacterias and molds. This chemical warfare gave us the idea to grow large amounts of each family, extract their chemical weapons and see what the did to pathogenic bacteria and to us. Penicillin was just that. The sweat loamy smell of fertile soil is volitile gases, warefare agent of the mycelium mold farts are the basis of modern antibiotics and a deep breath of that fecund gold not only grows our food but hold the answers to aid us fight bacterial infections. Streptomycin was antibiotic number two in the calculus of curing TB infection. The first sufa ring, a ring like chemical structure like a benzene radical was discovered during a boming raid on Bayer during WWI and it was based on a red fabric dye, a mainstay of Bayee before war. It turned the patient red in curing a bacterial infection. Better red than dead they said.

I am going somewhere with this so please hang on. Rene Dubois refined and perfected the sulfa antibiotic replacing Domagk's bright red Prontocil as one of the two in the search for a protocol. I can't recall the third antibiotic family but it might be a yeast's war tools. It is important to know three antibiotic families, defined by their source as penicillium mold to extract the antibiotic weapon penicillin. Streptomycin was found in a mycelium fungus. Tetracycline has that "cycline" suffix in another antibiotic family and a drug like cipro is a tetrocycline or "cycline" drug. The third antibiotic family needed one invention to cure TB. An English physician/researcher invented the modern MAT.

The MAT was needed for up to a year of three or more concomitant antibiotics, massively broad spectrum antibiotics to the date were needed for eradicating a bio-filmed bug confidently. That confidence was quickly shattered the first time a patient discontinued MAT prematurely as they felt quit well at some point. This made the first MDR resistant TB bacillus a social disease. Social workers were behind compliance. Noncompliance was first addressed over MAT treated patients. At first it was deadly serious and isolation in a hospital was the alternative. Great idea if it simlpy for a week. As expensive as it was, to sequster a person generally in a fenced in medical facility for a year or even a six month isolation was hard on families. What surprises me I guess, is MAT is a protocol that largely unchanged in over 60 years.

LL

P.S. pseudomomous auria is abbreviated Pa to my knowledge. PA is another, simpler metobolic error in amino acid replacement. Simple but fatal. I went right down a rabbit trail about when propionic acid is made due to a gene error and the four metabolic chemicals stop and cells die without the energy to live. If my use of Pa not PA is in error, post what means what for CF.

LL
 

CyrilCrodius

New member
First, teach her to keep her hands out of her mouth. Instill a disgust of dirty hands in her if you have to. It's something my mom has taught me and I suspect that it's exactly thanks to that that classmates got sick and I didn't.

I will also tell you what my mom would have done... and did. 4 CPT a day. 1 when waking up, 1 before lunch, 1 before dinner and 1 before bedtime. It seems excessive, but it has done miracles. I had B. Cepacia when I was 2 and a half years old. That's how she got rid of it. However, in spite of that, I started taking Tobramycin 80mg BID as young as 5 years old, so I guess that's the time around which the PA colonization started being permanent.
 
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