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mycobacterium absessus...Jane look

anonymous

New member
I think Jane has a son that has this type of bug.....Jane, I have m. absessus and have had it since 1994...it has as of late been really hurting my health.Well, today...oh my gosh...I am so excited I can barely type....I was reading on the National Jewish Hospital's website and I about had a cow becasue a cfer who has tested positve for it for a-typical TB for 6 years has been cured in 4 weeks on inhaled coloidal silver....Nationall Jewish is even in on the bandwagon doing the study.

Klearsen's Respiratory Inhalation Therapy Demonstrates Effectiveness Against Non-Tuberculous Mycobacteria (Hot Tub Lung)





Klearsen Corporation has demonstrated in vitro that its antimicrobial compound KC-287, is more effective against non-tuberculous Mycobacterium avium and M. abscessus than any of the presently used antibiotics.

BOULDER, Colo (PRWEB) March 14, 2006 -- Klearsen Corporation, a manufacturer of natural health care products, announced today that their KC-287 antimicrobial compound was shown to be more effective against non-tuberculous M. avium and M. abscessus than any antibiotic presently in use to treat these conditions.

The testing, performed at a National Research Center, utilized an automated screening protocol to measure the inhibitory effect of various drugs on mycobacteria. "After having very good results against M. tuberculosis, it seemed like the obvious step to screen the compound against M. avium and M. abscessus," said Steve Frank, the project director. "We have been utilizing this compound in our patented Respiratory Inhalation Therapy treatment for years to deal with numerous ailments and this testing finally provides us with the substantiation necessary to move into the mycobacteria treatment arena."

Preliminary work with an MAC (Mycobacterium avium complex) patient in clinical trials has shown encouraging results and suggests that the treatment period for this condition could be reduced from a typical 12 to 16 month course of antibiotics to a 4-week course of the Klearsen Respiratory Inhalation Therapy. "This is a very exciting period of demonstration for our KC-287 antimicrobial compound" stated Chris Groutt, the Marketing Director, "We have all seen the dramatic capabilities of this product and now it is finally reaching the surface where it can benefit huge portions of the population."

The treatment utilizes a nebulized mist of KC-287 to repeatedly coat the inner surfaces of the lungs. Being on the air-side of the tissue and formulated to gain enhanced entry into the bacterial cells allow the active agent to very effectively kill the mycobacteria with very low total dose to the subject. Although the treatment is still in the experimental stage, early results are so encouraging, that clinical studies are moving forward.

Paul Whittle, the CEO of Klearsen Corp., is anxious to see this technology applied to MAC as well as Tuberculosis patients. "Klearsen Corporation holds several patents relating to the respiratory therapy and the active agent. We are very pleased to see this level of performance in vivo."

Klearsen Corporation can be reached at 303-443-8700.

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Chris Groutt
KLEARSEN CORP
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303-443-8700
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mandy cf/cfrd 34
 

Jane

Digital opinion leader
Mandy, thanks so much for thinking of us. Wow, it sounds like great news!! I'm getting chills. I had read that name coloidal silver before but didn't know what is was. I'll have to do a search.

The bug my kids have is not this one, but the doc had originally thought it was m. abcessus before they did all the testing. Who knows, maybe it will work on ours too. Its all good.

I hope you are able to use it Mandy, how open are your doctors about new meds?

Thanks again for the great news.

Jane
 

anonymous

New member
Hi Jane-
Well after further research, I found on that NTM message board that National Jewish is not on board...they say to stay away from alternative therapies.

I have to say that I probably will try it...I try everything else alternative...some that work some that don't. All I know is I have a bug that most places won't even consider treating because the treatment is more dangerous than the bug. I asked my doc yesterday and he won't consider treating me until he has to transplant me.....not worth it. So here I sit with the bacteria eating my lungs waiting for a time to get listed......I have faith in alterative things.....I will let y'all know how it goes.

mandy
 

Jane

Digital opinion leader
Why won't they consider treating it? What is dangerous? I know treatment for abcessus is long-term, but I thought there were things that they could use. Amikacin nebs for one. What have they discussed with you?
 

anonymous

New member
I am resistant to all drugs except Tigacil and intermediate to amikacin. They thinking behind not treating me is this....even if they could eradicate it, Tigacil is known to have terrible side effects..Wallace suggested I get a G-tube b/c I wouldn't feel like eating. I am functioning very well..run, live, etc. and he said I probably would be sick for as long as I was on the meds...1 and a half years...and then, he said because I have had atb for so long, it would definitely come back in time.....

Then my doc who just happens to be head of transplant at Southwestern said he saw no reason to treat me because if and when I need a transplant, they will only go through with it if I have a drug that still works against the abscessuss...abscesses tends to show back up after transplant so they need a drug that can treat it. So, seeing how this bacteria works (it develops resistance almost always) I need to treat it later than sooner.....basically, if I want a transplant, I have to wait. Strange to be talking transplant when my numbers have been in the mid 50's for 10 years.....

Anyway, I am open to anything. I had pan resistant mucoid psuedo and my doc told me to get ready to be ill a lot.....I started on glutathione and in three months my one mucoid strain became sensitive to all drugs.....my docs were floored. And I became I believer in alternative therapies
mandy
 

anonymous

New member
Hi there, do you think Glutathione will also help you with the Abscessus and did you use it orally or nebulizing it when you treated the pseudomonas?Thanks for letting me know!!
Jeanpaul
 

anonymous

New member
Jane, I was wondering has Josh been on Tygacil for some time now? Can you tell me what the effects were, could he handle Tygacil, did it work?
I also have CF and Abscessus and I am looking for some people who tried Tygacil. Thanks you so much for your reply and all the best to Josh!!
Warm regard, Jeanpaul!
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Jane, I was wondering has Josh been on Tygacil for some time now? Can you tell me what the effects were, could he handle Tygacil, did it work?
I also have CF and Abscessus and I am looking for some people who tried Tygacil. </end quote></div>

Hi Jeanpaul,

Josh was put on tygecil in April while the doctors were waiting for sensitivity tests to come back for his bacteria. Both my sons grow a "unique" (aka: new, rare, unknown) atypical bug that is similar to abcessus recently named segniliparus rugosus. Because of the similarities, the doctors chose tygacil while waiting for the test results, BUT it turned out tygacil isn't one they can use to treat this particular bug.

Josh was on it for a month (IV- twice a day). While he was on it he had daily low-grade fevers (100) and was nauseous, mostly just felt drained. As soon as they got the test results, they took him off it. Within two days he felt a little better and had no fevers.

The combination he has now is oral Rifabutin and Bactrim and IV Imipenem. He's been on this combo for a week and we are still sorting out his side-effects. He's had no fevers, but he feels completely exhausted after getting the imipenem. I hope it gets better after his body adjusts. Unfortunately its going to be <b>every six hours for 3-5 months!</b> ALL SUMMER.

What have you been on so far? My kids were on Linezolid, clofazamine and gatifloxacin for a year, then amikacin nebs. Have you tried this site? LisaV told me about it- very interesting and mycobacteria-specific info.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com/support/login.asp
">http://www.ntminfo.com/support/login.asp
</a>

Good luck. Let me know how it goes.
 

anonymous

New member
Hi jane, thanks for your answer. I have been on ***** lots of meds.
First the classic 3 TB meds; rifabutin, ethambutol and another one, also zithromax, then linezolid, latter clofamizyne. Then IV med's Imipenem (meronem; as it causes less side effects) + cefoxitin + claryhtromycin + Amikacin. Latter Tygacil and lately added Gamma Interferon. To conclude; have been in hospital for the last 9 months. Continuing to fight the fight and not giving up!
I am looking daily at NTM.info, my acronym is hardclubber.
Interesting article I found was this one <a target=_blank class=ftalternatingbarlinklarge href="http://www.journals.uchicago.edu/CID/journal/issues/v42n12/38494/38494.web.pdf
">http://www.journals.uchicago.e...2/38494/38494.web.pdf
</a>unfortunately your bug isn't mentioned there.
I am probably gonna started the Klearsen KC287 next week. I spoke to some trial members and they have such a good results, I start to believe in it!
Regards,
Jeanpaul
 

anonymous

New member
forgot to mention; also started glutathione oral. I am not using nebbed glutathione as I don't want to irritate the longs too much.
I am also looking at supportive medications such as anti inflammatory food, oregano oil etc
JP
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>


Then IV med's Imipenem (meronem; as it causes less side effects) + cefoxitin + claryhtromycin + Amikacin. Latter Tygacil and lately added Gamma Interferon. To conclude; have been in hospital for the last 9 months. Continuing to fight the fight and not giving up!

I am looking daily at NTM.info, my acronym is hardclubber.

I am probably gonna started the Klearsen KC287 next week. I spoke to some trial members and they have such a good results, I start to believe in it!</end quote></div>


OH, That was YOU? That site is very informative. Interesting you should mention the Interferon. It was mentioned to us recently that some people are lacking in this and are more prone to myco. Please tell me more about the Klearsen KC287.
 

anonymous

New member
Hi Jane, basically it is inhaling a substance consisting of watter, nano particles silver and some mint extract. The silver particles block the oxygen take in from bacteria and they die very quickly when in contact with those particles.
It is now tested by 20 people and the first starters, most of them MAC patients have great results, The very first user had negative cultures after 3 months using KC287. She had not seen negatives for the last 6 years!! She was recommanded lung surgery of 3 lobes. I also talked to a CF person with Abscessus. She is now on it for 4 weeks and says she has more energy and can breath deeper. No cultures, ct scan or pleghm tests done, so cannot say anything on that.
Of course you can always try the normal way with Antibiotics etc etc, but if you come to a moment where you have to make radical decissions or other things, this might be an alternative to consider. I am not afraid of the toxity of the silver as it is so low. Reports have also shown that silver is very rapidly cleared from the longs. It is something I keep an eye on as my condition has beengoing down like a rocket in 1.5 year and doesn't seem to stabilize.
So to conclude the first responses from KC287 are all very positive. Of course I would like to hear a true CF-er with abscessus getting negative cultures, but it is too early. You can see on the NTM website many many people are looking at this, but nobody wants to start first. However I understood from Klearsen that they got tons of info requests as result of that post on NTM info. Please ask more if you want to!
 

anonymous

New member
About the interferon, that one showed results on microbiological level, in other words I got negative AFB smears not cultures after using it. So it definitely kicked some asses... If doctors recommand it, I would ask them if they consider inhaling it as that would take out all the side effects of it. I think, especially in CF people interferon will be helpfull!
Greets
JP
 

Jane

Digital opinion leader
YUP, that's me. Jane was already taken.<img src="">

WOW, that info on KC287 is very encouraging. I'm going to mention it to our team.
Thanks
 

hardclubber

New member
Just be prepared; you will get some snobby reaction first...because it is not proven fortune 500 listed developped antibiotic first....second they will start talking about toxity of silver....
I know the patients who used the KC287 also talked to their doctors/md's and they said the numbers were so low that they didn't see any risks. The first patients and also the members of klearsen themselvers who used it, did urine and blood tests and no traces of silver were there.
If you want to be a bit more prepared you can send an email to clinicalresearch@klearsen.com and address this one to Bree Saffell, she is head of clinical trial team and amazingly amazingly helpfel. I have send tons of questions always got and understandable email explaining everything in detail back.
If your docs are a little bit open minded or if they have an "well just try it" attitude, this is definitely something to consider. Good thing is also that for example when it comes to abscessus, the way the KC287 works it doesn't matter if your abscessus is resitant to AB's or not. In theory the KC287 should be able to kill many mycobacterium because they all need the oxygen. The KC287 also contains a substance which kills the bacterial cellwall which is often a problem when using normal AB's. These cellwalls or biofilms basicly protect bacteria from the AB's. The KC287 has a component which also cracks down that wall and again should increase the effectiviness of the medicine. You might also just give bree a call

> Breeana K. Saffell
> Clinical Research Director
> Klearsen Research Department
> 303-443-8700 x107
Let me know how your progress!!
By they way at which hospital are you listed with your kids, local CF center or NJ?
 

Jane

Digital opinion leader
WOW again, thanks.

My kids' doctor tends to be very conservative but recently has become much more open to "alternative" stuff. She is perplexed by this bacteria because it has no history, so she may be more receptive. She also may want to wait until she sees some results (or not) from this current round of antibiotics.

They are seen at Children's in Boston, but have had consults with NJ, I don't if that makes the "listed" there or not.
 

hardclubber

New member
Hi jane, sounds good. Let us know when things get rolling. I am curious what the docs say. All the best for Josh!!
Jeanpaul
 
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