Talked to Dr K at Clongen Labs today. He said hubby's bloodslides show lots of the mystery bug.
It will be 1 or 2 more weeks until the results of 16S DNA sequencing are final -- depends on if there is only one pathogen or multiple pathogens. At that time we should know what the bug actually is or at least what class of pathogens it belongs to if it is a new undiscovered bug.
The visible bugs seen on hubby's slides were similar to those the lab is finding in other tickborne patients -- a gram negative highly motile pathogen.
Hubby's LLMD appointment is 12/16 -- hopefully the labwork will be completed by then.
I will be doing additional research in the next few weeks, but at this point don't know what treatment we will pursue. Pretty sure it will have to be oral antibiotics and herbs -- just don't think we can afford IV right now and also think the herx from IV would be really really bad.
Obviously this bug is very resistant to many antibiotics and most likely has a biofilm.
I am very excited because at least now we have something real to treat and are not just guessing any more.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I'm so happy for you and hubby. You've been working so very hard to find answers.
I'm definitely going to request further testing from Clongen now after hearing about your experience.
I'm sure you've mentioned it before, but would you mind sharing with us precisely which tests you ordered from Clongen? Is Doc K at Clongen able to do sensitivity testing to see what antibiotics/herbs this mystery bug is susceptible to?
Please keep us posted. I'm very curious to hear what the LLMD's might do with this information in the way of treatment.
Thank you for sharing all of this.
Wishing you all the very best and fast answers, Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
-
Bea,
That is fantastic news. Bet you and your husband are both are on cloud nine - and thanks for sharing.
I spoke with Dr. K at that lab a couple weeks ago and he was very helpful - I was impressed with his breadth of knowledge.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Bea,
I hope this is the beginning of your husband's recovery to full health. You have been so wonderfully tenacious.
Please keep us posted on this mystery bug, it sounds like an important discovery for your husband and others. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Very exciting and can't wait to learn more! Most importantly, hopefully this will lead to better days ahead for your hubby and even more hopeful it will lead to better days to many others that may be suffering from the same bug as well!!
Do we think we are talking about the same organism Dr. F is reporting seeing on many of the smears he performs??
Posts: 561 | From mass | Registered: Jul 2007
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SForsgren
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posted
Will they be able to test for antibiotic susceptibility to see which ones might work?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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I hope whatever they find is easy to treat. I think my family has some bug that has not been diagnosed yet. Please keep us updated!
Peggy
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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disturbedme
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Member # 12346
posted
This is good news.
I mentioned Clongen (I have no idea how to pronoune it) to my LLMD and he said he's never heard of it before... I was asking him about possibly getting tested through them. He said he would definitely try to find out more about them.
I suppose they are still slightly new?
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
My guess is that yes this is the same bug that Fry is seeing.
Hubby had 2 bloodslides done by Fry -- March, 2007 showed ring forms of Babesia and what was then labeled as Bartonella or Mycoplasma. Treated babs for 4 months then retested. 2nd bloodslide in August, 2007 found only the Bart/BLO/mycoplasma or whatever -- very little visible change on the slides.
Unfortunately Clongen does not take pictures of their slides so won't be able to do a visible comparison to the old Fry pictures.
Fry is reporting that he has found a betaproteobacteria species.
Clongen is guessing that this bug is in the pseudomonas class -- that would make it a betaproteobacteria. This is only a guess at this time -- not confirmed.
Pretty sure this bug will be very difficult to treat if it is a pseudomonas -- those bacteria have efflux pumps and are often very resistant to many antibiotics. Also think they have a biofilm and produce endotoxins when they are killed.
Have found some research indicating that ticks have tested positive for some pseudomonas species although it is impossible to say if these bacteria are actually transmitted by ticks or not. Pseudomonas are very common in the environment and may simply be an opportunistic pathogen that is present due to a weakened immmune system.
Scott,
Not sure if the lab has the ability to test for antibiotic susceptibility. Do know they do contract labwork and if someone had the money -- we don't -- they probably would either be able to do that in house or find someone else who could do that for them.
Note: Hubby has used 6 different antibiotics since the Fry bloodslides. Obviously those had little effect. I do know which herbs landed him in the ER and hospital in 2007 and what recently triggered a major setback.
In my opinion, the antibiotics which are most effective on this mystery bug are some of the ones currently used to treat Bartonella/BLO/mycoplasma. In 2007 hubby was not taking anything that would have worked on a biofilm. When he added that into his protocol this year is when everything went downhill -- we have backed off on meds and herbs until our next LLMD appointment.
Do think this bug is going to require some sort of antibiotic combo, although apparently Fry is using a single antibiotic plus something for biofilms. Hubby has taken low doses of Minocycline which is what I have read Fry is using -- obviously has not worked for him, but who knows.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Will you be able to use this lab to justify antibiotic treatment through insurance?
Posts: 984 | From San Diego | Registered: Nov 2006
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CD57
Frequent Contributor (1K+ posts)
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posted
wow this is exciting news!!! maybe we are on the road to something BIG. I feel hopeful, even if this sucker is hard to kill.
Bea, out of curiousity, does your hubby test positive for bartonella or mycoplasma?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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Member # 11749
posted
Also, Bea, I had done some reading about pseudomonas. It appears that, as you mentioned, the species that infects humans is often picked up in hospitals. Wasn't your hubby in the hospital several times?
It would be interesting if he had picked it up in hospital, as opposed to a tick bite.
Posts: 3528 | From US | Registered: Apr 2007
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Yes hubby has been in many hospitals and ER's in half a dozen different states over the last 7 1/2 years.
It was after the 2nd Fry test when we tried to treat bart that hubby ended up in the hospital for a total of 78 days in 2007. Previous to that had only ever been in for 2-3 days at a time max.
Fry test in March 2007 found Bartonella IgG elevated at 1:64 with IgM negative -- lab said could not differentiate between B. quintana and B. hensalae. Did not repeat this test in August 2007. Tested a few times by several other labs -- always negative.
Mycoplasma is a big question mark for hubby. Has tested positive for cold agglutins several times in fall of 2007 and again on 10/05/08 when everything crashed this year. In November, 2007 IgG for M. pneumonioa from Quest was elevated at 1.95 (Range -- greater than 1.1 positive). IgM negative.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Boomerang
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posted
Bea, so glad to hear that they have found something for you to target with treatment.
Please keep us posted!
Posts: 1366 | From Southeast | Registered: Sep 2005
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Here is the link to the info on the lab including their license info. I can't see any reason that insurance would deny antibiotic coverage based on positive test results, but since we have not yet been invoiced I don't know if it will say "research and experimental" or not regarding the testing. Even so, that in itself doesn't rule out insurance coverage.
Hubby asked and Dr K said he relocated from California because of his wife or as he put it "he met a woman".
posted
Good for you all Bea!!!!! Its about time you all got some headway!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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hshbmom
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posted
Wonderful news Bea!
Is this the unknown bacteria that's "consistent with Mycoplasma or Heamobartonella?"
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Perhaps one of the biggest mysteries about the "mystery bug" is why people with such high levels of bacteremia do not run fevers and show signs of acute infections such as elevated WBC's.
I think the answer lies in the effects Lyme and/or other tickborne infections have on the immune system. Pseudomonas (if that is indeed the mystery bug) by itself frequently appears as an acute infection although it can develop into a chronic infection.
Otherwise I think someone would have made the connection and started examining bloodslides many years ago.
Bea Seibert
hsbmom,
Yes, I think this is what Fry used to call mycoplasma or haemobartonella. I give him the credit for drawing attention to the bug. And he may still be the one who gets to name it from what I have read.
However, Clongen lab probably has more expensive equipment and more time to devote to the research. They say they can identify in 2 or 3 weeks what Fry took 11 years to identify since he did not have the same equipment.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
WOW!!!!!!
BEA!!!!!
AWesome!!!!!
Trout
Checking out this lab myself.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Bea,
I'm really in there pitching for you and your hubby!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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DebAz
Unregistered
posted
Very interesting stuff.. Never heard of the Clongen Lab.
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I surely will keep that link for further testing. There is just about everything you would want to test for at that lab.. it is quite extensive.
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Bea,
Congratulations on perservering. Like the others, I hope this is the big clue, not only for you and hubby, but because so many of us (myself very much included) have symptoms so much like Steve's. I've been blaming Bart for most of mine, and am Bart positive on tests, but have not responded to Bart treatment except a reduction of myoclonus.
I did have pseudomonas on my skin - it was cultured and that's what came up. My internist's nurse thought I had picked it up at the medical center when I was coming in twice a week for Bicillin injections. It tested sensitive to Cipro and something else (would have to look it up) but I have tendon damage from Levaquin so can't do Cipro. My LLMDs didn't seem too concerned back then because mine seemed to be a skin form. But now I wonder if there's an underlying systemic thing going on with pseudomonas.
Also, Tegecycline has an efflux pump inhibitor (that's why it works so well, according to lecture at ILADS) - wonder if it works on pseudomonas.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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sparkle7
Frequent Contributor (5K+ posts)
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posted
Thanks for the info. Good luck to you & your husband.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I also ran across Cipro as a possible treatment for pseudomonas in my research. Hubby used that for one month back in 2006 I think. May have responded a little, but nothing compared to his response to Levaquin. But after several months that also did not erradicate this infection although it helped greatly with neuro symptoms.
At least we should have some answers as to the class the bug is in soon. Next time we talk to Dr K I plan to ask what percent of slides show this mystery bug. Never did know how frequently Fry found it, but hardly ever heard of a negative bloodslide from him.
I collected all the recent links on Clongen in one thread for future reference and also posted details there on how to order testing for the mystery bug.
The current state of multidrug-resistant gram-negative bacilli in North America.
Nicasio AM, Kuti JL, Nicolau DP.
Center for Anti-Infective Research and Development, Hartford Hospital, Hartford, CT, USA.
Although much of today's media focuses on multidrug-resistant gram-positive bacteria such as methicillin-resistant Staphylococcus aureus and vancomycin-resistant Enterococcus, resistance within gram-negative bacilli continues to rise, occasionally creating situations in which few or no antibiotics that retain activity are available.
Extended-spectrum beta-lactamase (ESBL)-producing Escherichia coli and Klebsiella sp are emerging threats nationally. Although carbapenems are considered the antibiotic class of choice to treat ESBL-producing Enterobacteriaceae, the ability of these organisms to produce carbapenemases has now become apparent in some regions throughout the United States. Although still rare, Klebsiella sp that produce KPC-2 retain susceptibility only to tigecycline, polymyxins, and occasionally aminoglycosides.
Multidrug resistance among Pseudomonas aeruginosa and Acinetobacter sp has always been apparent across many hospitals in the United States.
Recent surveillance indicates increasing resistance to all currently available antibiotics, including carbapenems, cephalosporins, penicillins, fluoroquinolones, and aminoglycosides.
Against many strains, only polymyxins retain activity; however, resistance has also been reported to these agents. Fortunately, resistance mechanisms such as metallo-beta-lactamases are still rare in the United States.
As no new antibiotics with novel mechanisms against many of these gram-negative bacilli are expected to be developed in the foreseeable future, careful and conservative use of agents combined with good infection control practices is required.
Publication Types: Review
PMID: 18225969 [PubMed - indexed for MEDLINE]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
[QUOTE]Originally posted by seibertneurolyme: [QB] Perhaps one of the biggest mysteries about the "mystery bug" is why people with such high levels of bacteremia do not run fevers and show signs of acute infections such as elevated WBC's.
I did have fevers, until thyroid problems, and a high white count. I had to see a cancer specialist because of the fevers and high white counts. He couldn't figure it out either.
This went on for years (about 15). My white count has been fine now since I've been on antibiotics.
I did test positive for Bartonella this spring through Quest. That was after being on antibiotics for three years. I thought that was odd. I guess none of the antibiotics I've taken so far have been able to clear the bartonella.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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Jill E.
Frequent Contributor (1K+ posts)
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posted
Bea,
Thanks for taking the time to post all the info about pseudomonas, Tigecyline, etc.
I'm going to ask my LLMDs about the pseudomonas issue again, given that I had and may still have the skin version, so I want to know if it's systemic.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Is there a chance that the psuedomonas are not dangerous. I know it is probably far fetched in your hubby's case and in mine, but many pseudomonas are not harmful to humans at all.
What tests need to be done to prove they are harmful?
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10179 | From Illinois | Registered: Aug 2004
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kelmo
Frequent Contributor (1K+ posts)
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posted
quote: I have an appt with Fry this Friday, I will try to incorporate this Clongen findings in our visit and see what he has to say.
Thank you, Trevor. I was going to print off this thread and send it to him. Let me know what his thoughts are.
Thanks Kelly
Posts: 2903 | From AZ | Registered: Feb 2006
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CD57
Frequent Contributor (1K+ posts)
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posted
The research seems to clll out the aerogosa strain as the troublesome one. Does that mean that no studies have been done on the other strains, or that they are not implicated in human disease?
Posts: 3528 | From US | Registered: Apr 2007
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kelmo
Frequent Contributor (1K+ posts)
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posted
quote: but hardly ever heard of a negative bloodslide from him
My first blood slide was completely clean.
My second had infected red blood cells after six months on zith and one Rifampin pill that blew my head off my shoulders.
Posts: 2903 | From AZ | Registered: Feb 2006
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
The more complicated these bugs become, the more we need the photons to take care of them. I am betting on photons!
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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there are two problems, i believe. First, we need this id as fast as possible.Too bad fry wont go public with his findings.
Second is treatment.If the theories are right we shall probably need treatment with ABX that cant be administred by LLMDs.In fact, this infection is much more to be handled by inf. med. depts.
Gale
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METALLlC BLUE
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posted
So are you telling me that my test from Fry with Hemobartonella and Mycoplasma spp is now being considered something else?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
i don't know if you remember but i think i have some symptoms in common with hubby, and also a situation where i have gotten worse with prolonged treatment. i am interested in this testing because maybe i have something else that can be identified and treated. while i have lyme there is some missing pieces to my puzzle. no one understands why my situation has worsened. i am currently on iv doxy.
can you tell me what tests you ordered? what did hubby test positive for? also did dr k say he would be able to determine which abx was effective for each bacteria? if so how?
thanks bea and keep us updated. best wishes.
Posts: 262 | From nj | Registered: Dec 2007
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The answer is probably maybe -- how is that for a direct answer?
As Fry has obviously determined and Dr K kept repeating -- many gram negative pathogens look alike to the eye through a microscope. Only DNA sequencing can determine the exact pathogen and that is not even 100%, but it is the closest we have.
Tried to post a new thread explaining the testing, but LymeNet was not cooperating.
Here is the link. Will try to post the article later.
The lab is working as fast as they can, but I was told that doing the DNA sequencing for just one speciman takes a minimum of a couple of hours per day for a week if there is only one pathogen. If there are multiple pathogens then it takes a couple of weeks at least.
njgirl,
Link where I posted instructions on how to order testing.
Everyone needs to remember that pseudomonas has not been confirmed yet as the mystery bug. Until the testing is complete we won't know for sure.
Bea Seibert
Note: So far all I know for certain is that Clongen saw something on hubby's bloodslide that looks like what the lab has seen on other bloodslides from other tickborne disease patients. We are assuming it is the same thing that Fry Lab saw 2 times last year on hubby's bloodslides.
Clongen Lab is doing 16S DNA sequencing on hubby's bloodslides and also on bloodslides from other patients (do not know how many samples are in process at this point). Hubby's results will most likely not be available until 12/16. Some of the other patients -- I don't know any of them -- should have results sooner I think.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I take back what I said about Fry not having negative tests. I found a thread that I actually posted to that reported a number of people had negative bloodslides.
posted
Are there particular symptoms associated with this new pathogen?
Posts: 710 | From West Coast | Registered: May 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
Bea or anyone who may know,
What is Fry currently recommending for biofilms?
I am taking Wobenzyme and hoping that is covering it.
And Bea, keep up the good work!!!!!!! You are such a blessing to folks on this board! Wishing the best for you and your hubby!
Posts: 4590 | From Midwest | Registered: Jun 2008
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In answer to your question -- Yikes!!!!!!!!!!!!! It triggered a bad memory. Actually 2 bad memories.
The first time hubby had Wobenzyme (back when we didn't know any better and just did what the docs told us) he took the suggested dose of 11 Wobenzyme 3 times per day. I think it was the 2nd day that he ended up in the hospital unconscious for 15 hours with symptoms of encephalopathy.
His spinal tap showed elevated protein. EEG's were abnormal, but no seizure spikes. At that time he had not had any antibiotics -- only the Borrelogen herbal formula. Anyway, I have to wonder just what infection the Wobenzyme activated.
Apparently Fry is using a compounded dose of calcium EDTA with minocycline. Just confirmed that with a patient.
Hubby had an IV of calcium EDTA once -- was not fun. I finally found the old post. At that time he was not on any antibiotics -- I think he had just started the Buhner protocol at low doses. Anyway, I had always thought it was the bismuth in the pepto bismol that caused a problem. But maybe the calcium EDTA was the real problem and it was not a Lyme herx, but a reaction to the mystery bug ????????????
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hey bea! that is great news! sorry if this has been asked already, i'm too exhausted to read the thread thoroughly -- but which tests exactly did your hubby order through clongen?
I wish I could dig in and read & follow all your wonderful research. Very difficult to read alot and I apologize if this is a stupid question or one that has been brought up before.
I think it is good to know what we are dealing with but as far as abx isn't there several that will treat each co-infection/pathogen? Once you identify the pathogens will the lab tell you what abx will work best? I just feel like I have taken such a wide array of abx over an extended period of time (3+ years) that something should have worked. Based on symptoms my llmd assumes I have it all (co-infections)
I probably am not making sense. Short version - once identified how will this change tx from what you've been doing?
Posts: 262 | From nj | Registered: Dec 2007
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You have asked the million dollar question. At this point I don't know the answer.
A lot depends on what the pathogen turns out to be. We don't really know for sure yet if Clongen Lab and Fry Lab are even looking at the same bug.
One very important question in my mind is if the pathogen has a biofilm. If it does that is something that many LLMD's do not currently treat for. That could make a big difference on whether any antibiotics have even been hitting this pathogen.
Many LLMD's treat for fibrinogen, but that may not be enough. That may not affect a biofilm if this bug has one.
I updated the thread below based on my discussion with the lab today.
I counted them up last night and so far hubby has been on 25 different antibiotics. Most were used one at a time -- some oral and some IV. Plus he has done many alternative things such as IV hydrogen peroxide, IV blood ozone, IV colloidal silver, IV UVB and many herbal things.
Bea Seibert
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