Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 In a message dated 2/13/2004 11:39:29 PM Central Standard Time, hbyc7@... writes: Yes - and not treated unless causing symptoms. Has an inherent antibiotic resistance making it difficult to eradicate. Research is not yet clear whether it is a pathogen to be worried about or just a bacteria 'along for the ride'. M So it is OK to not treat it? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Yes - and not treated unless causing symptoms. Has an inherent antibiotic resistance making it difficult to eradicate. Research is not yet clear whether it is a pathogen to be worried about or just a bacteria 'along for the ride'. M Bacteria > Has anyone had the bacteria Stenotrophomonas maltophilia. ...would like to hear how other places deal with this > bacteria. Thanks Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Every center does it differently; it was complicating a pneumonia I had, so it has been treated in me many times, always with great success; it is ba sicly a " water bug. " And true, it is a " fellow traveler " with other bugs that we tend to colonise and/or become infected with. n Rojas, who hopes that my current bacterial obsession has not bored you all to pieces! Bacteria Has anyone had the bacteria Stenotrophomonas maltophilia. Youngest keeps culturing for this and they give he bactrium but it seem to still be there. So this time they asked if she had symptoms and I said no so they have decided not to treat her. I just would like to hear how other places deal with this bacteria. Thanks Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 I'm concerned about this steno bug, too. Everytime my son is on Tobi, his cough gets worse.. and it's not the shallow bronchospasm cough, it's the deep..something growing in there cough. His PFT's were really good in december, but he seems to be worse on Tobi than off it and I think it's because of the steno. However, if Tobi is making his steno grow, it can only be because it's killing off pseudo (he's grown that before, although not on last two cultures) b/c steno does best when it's not competing with anything. I don't want to pester the clinic.. I know that sounds incredibly stupid, but his FEV1 was 94% in December, which is by far his best ever, and I just don't want to rock the boat... Steph, mom of Iain 7, wcf > In a message dated 2/13/2004 11:39:29 PM Central Standard Time, > hbyc7@r... writes: > Yes - and not treated unless causing symptoms. Has an inherent antibiotic > resistance making it difficult to eradicate. > > Research is not yet clear whether it is a pathogen to be worried about or > just a bacteria 'along for the ride'. > > M > So it is OK to not treat it? Deb A > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 In a message dated 2/14/2004 4:30:24 PM Central Standard Time, brmorey@... writes: Hi Deb, has had this for 7 years and they also treated it a few times with Bactrim but it hasn't gone away. It doesn't seem to be causing her much trouble, as her PFT's are still good in the 90's. I think if it isn't causing any symptoms there is no need to treat. Just my opinion, and our experience with it. love, M Thanks ! I know we have treated it to with Bactrim but I was concerned when they didn't want to treat it because she is not having symptoms. Thanks for your input. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 > So it is OK to not treat it? Deb A Re: stenotrophomonas maltophilia The medical community seems undecided as to whether or not it should be treated, if not causing apparent problems, since they haven't determined yet if it is a pathogen. Our doc was concerned that it may be helping keep other bacteria, known to be pathogens, at bay and that eradicating the steno would allow growth of PA or other. It seems to be another one of those awful dilemmas that there is no definitive answer for yet. More research needed! M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Well, I am no expert, but it has always been treated in me, and in my youngest, who has cystic fibrosis as well; we are none the worse for having been treated, was always told, still am, that it is best to treat it. This is so difficult, having " Medical fashions! " Love to you, , n Re: Bacteria > So it is OK to not treat it? Deb A Re: stenotrophomonas maltophilia The medical community seems undecided as to whether or not it should be treated, if not causing apparent problems, since they haven't determined yet if it is a pathogen. Our doc was concerned that it may be helping keep other bacteria, known to be pathogens, at bay and that eradicating the steno would allow growth of PA or other. It seems to be another one of those awful dilemmas that there is no definitive answer for yet. More research needed! M ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Hi Deb, has had this for 7 years and they also treated it a few times with Bactrim but it hasn't gone away. It doesn't seem to be causing her much trouble, as her PFT's are still good in the 90's. I think if it isn't causing any symptoms there is no need to treat. Just my opinion, and our experience with it. love, M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 In a message dated 2/16/2004 9:21:58 AM Central Standard Time, kimpayne@... writes: That's why we went the " alternative " route. got rid of S. maltophilia by taking magnesium, MSM (sulfur -- which is different from the antibiotic, sulfa), and inhaling tea tree essential oil about three times a week. He cultured aspergillus at the same time as the S. maltophilia, and this regimine erradicated the aspergillus too. I know you give your girls magnesium, but I don't remember if they're taking Solgar's or you're still using Shaklee. If it's Shaklee, maybe the cells aren't uptaking the Mg. If it's Solgar, maybe they need more -- or a consistent round of TTO? Kim We are using the Solgar magnesium but we do not use the tea tree oil 3 times a week. I did have her use it last night. She just took the bottle and smelled it, She also was smelling the Lavender bottle too. When you say inhale the tea tree oil do you mean by boiling it in a pot or inhaling it in a nebulizer? Also we have never used the MSM before what does this do? Last week Natalynn tested positive for strep so they have her on Amoxicillin would that help to get rid of the bacteria? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Deb, No, don't put the tea tree oil (TTO) into the nebulizer. Just boil some water, let it cool a minute, then drop in a couple drops of TTO and let her inhale the vapors of the oil and water. did this for about five minutes, three times a week for a couple months. However, we're not sure exactly how long it took to get rid of the S. maltophilia and aspergillus using this method. We got the results of the sputum culture Jan. 18, 2002; he began inhaling eucalyptus essential oil the following Friday, then started taking magnesium and MSM five days later. A couple weeks later, he switched to TTO. He didn't have another sputum culture taken until April 10, 2002 --- so we're unsure at what point between end of January and beginning of April that he got rid of the organisms. But we're glad they're gone. (And remember, his mucoid PA became sensitive to all antibiotics during this time, and at some point between April 2002 and December 2002, something happened to the mucoid PA because when he was tested for it in December, he failed to culture it for the first time since 1998). And yes, amoxicillin is commonly prescribed for staph. has only had staph once -- they picked it up in his culture when he was diagnosed with CF. They put him on amoxicillin for three weeks and that took care of it. Whatever you do, be sure to keep the girls on those probiotics! Kim Kim We are using the Solgar magnesium but we do not use the tea tree oil 3 times a week. I did have her use it last night. She just took the bottle and smelled it, She also was smelling the Lavender bottle too. When you say inhale the tea tree oil do you mean by boiling it in a pot or inhaling it in a nebulizer? Also we have never used the MSM before what does this do? Last week Natalynn tested positive for strep so they have her on Amoxicillin would that help to get rid of the bacteria? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Deb, The paper that n posted says that S. Maltophilia is an organism that colonizes the airways, that in itself is a very scary thought, and a reason to try to erradicate these suckers. This is from another post from Kim that I saved about MSM: " > 3. What is MSM, what dosage would be appropriate, > and how is it delivered? MSM stands for methyl-sulfonylmethane. It's a natural derivative of DMSO and a natural source of sulfur. People with CF are low in sulfur (quite possible due to a magnesium deficiency). You can go to http://www.healthwell.com if you want to connect the dots between minerals and amino acids. Studies show that MSM can alleviate scarring. So some of us are hoping that by taking MSM we're preventing or attenuating any organ fibrosing (scarring) caused by CF. I've been taking MSM for over a year and have noticed a huge difference in my skin and nails -- softer skin, stronger, faster growing nails. Sulfur is necessary for healthy skin and nails (and a lot more). You can go to http://www.msm.com to read more. Please see their list for quality sources of MSM! We only buy MSM manufactured by Carolwood. Carolwood patents their MSM under the Lignisol name. You will find many companies buy MSM from Carolwood and if they do, they will put Lignisol on the label. One example is MSM made by Natrol (that's the brand I buy when it goes on sale, buy 1 get 1 free at Walgreens!). You will also find MSM sold in combo with oh, shoot -- what's that " g " thing everyone is buying for arthritis? Ah! glucosamine! We don't buy the combo, just the MSM. " Good luck, > > Kim > We are using the Solgar magnesium but we do not use the tea tree oil > 3 times a week. I did have her use it last night. She just took the > bottle and smelled it, She also was smelling the Lavender bottle too. > When you say inhale the tea tree oil do you mean by boiling it in a > pot or inhaling it in a nebulizer? > Also we have never used the MSM before what does this do? Last week > Natalynn tested positive for strep so they have her on Amoxicillin > would that help to get rid of the bacteria? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 , Thanks for mentioning the MSM to Deb. Also, MSM is an anti-inflammatory, so perhaps this is part of the reason has such good health with it. Kim > > > > Kim > > We are using the Solgar magnesium but we do not use the tea tree > oil > > 3 times a week. I did have her use it last night. She just took the > > bottle and smelled it, She also was smelling the Lavender bottle > too. > > When you say inhale the tea tree oil do you mean by boiling it in a > > pot or inhaling it in a nebulizer? > > Also we have never used the MSM before what does this do? Last week > > Natalynn tested positive for strep so they have her on Amoxicillin > > would that help to get rid of the bacteria? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 In a message dated 2/16/2004 12:06:43 PM Central Standard Time, kimpayne@... writes: Whatever you do, be sure to keep the girls on those probiotics! Kim Yep we have been really faithful about using the proboitics. But what does the MSM do for people with CF? Oh and like always thanks for sharing your knowledge!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 In a message dated 2/16/2004 1:45:11 PM Central Standard Time, palazo_a@... writes: Thanks for the very informative e-mail it helped a lot!!!! Deb A Quote Link to comment Share on other sites More sharing options...
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