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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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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hiker53
Frequent Contributor (5K+ posts)
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posted
Does Clongen labs believe this is the same germs that Fry is finding? Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8927 | From Illinois | Registered: Aug 2004
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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)
Member # 11749
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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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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hiker53
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posted
Bea,
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: 8927 | From Illinois | Registered: Aug 2004
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kelmo
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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)
Member # 11749
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
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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
Posts: 268 | From europe | Registered: May 2008
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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)
Member # 15759
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
Thanks for the info, Bea.
Wonder if just a Calcium EDTA oral supplement in addition to Minocycline would be good enough.
Doesn't EDTA chelate heavy metals? Could I run myself into problems there, chelating metals that I am not equipped to fully detox in my fragile state of health?
How much EDTA would be necessary? I found a product on iherb.com that has 100mg per capsule. Is that enough? (I'm already on Minocycline right now)
Posts: 4590 | From Midwest | Registered: Jun 2008
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I am not going to suggest doses, since Dr F is not hubby's doc and also because I am a little confused on the doses myself.
Generally calcium EDTA is primarily used for lead chelation and magnesium EDTA I think is used for other metals and for cardiovascular issues. The use of calcium EDTA is newer I think.
I think the important point to remember is that using something for biofilms needs to be combined with a killing agent -- antibiotics or herbs. The two instances I referenced regarding hubby coincidentally were when he was not on antibiotics.
Hubby has done lots of Heparin -- shots, sublingual and even IV. Obviously this has not worked for him. He currently uses Vitalzym which has Serapeptase in it. But obviously this has not worked either. Both have been mildly helpful from a bloodflow standpoint I think, but not really sure they are doing much if anything for biofilms.
I just think we need more info. I will most likely keep experimenting on hubby as I don't feel like we have a choice. I am not willing to just "do nothing". But I won't be making suggestions to anyone unless I am sure it is safe and that it actually works.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
First off, very sorry to hear about Leslie Wermers, I just finished watching some of the tribute videos on youtube, if you haven't seen them you should take a look.
So, I saw Fry yesterday, and as hard as it is for me to keep focused being at the doctor with my constant anxiety through the roof, I managed to bring back some information from him.
I'd like to place a disclaimer ahead of time, that please don't take this as 100% definite, he speaks in highly scientific terms about 95% of the time and it goes right over my head.
And with my cognitive dysfunction I feel I have an IQ of around 50.
Anyway, I mentioned Clongen labs to Dr. Fry, he said he had spoken with the head of Clongen labs, and Fry believes they are working on two different bugs, however if they are working on the same bug as Fry, Fry believes he had came across it first and has proposed a name.
According to Fry he has DNA sequenced this bug, it is a new bug, he has given it a name that starts with a P and ends in bacterium, now Like DebAZ had mentioned he said the name so fast, I can't recall it for my life. But he has DNA sequenced, named it, and is working with a grant and the university of Oklahoma to further research and understand it.
I talked to him about treatment plans, he says as usual it takes time and it takes a lot of money. For now the most common methods as far as I know that Fry uses is Zith/Mepron and Biaxin/Plaquenil.
From my understanding he wants to take an entirely different approach, but again this is lots of money and lots of time down the road.
Again I wish I had clearer more easily understandable information to bring back, but when is this bug clear and understandable, not to often.
However, I for one believe Fry is clearly making progress, i heard it from him face to face. For all the skeptics still out there, feel free to be skeptical, I can still understand where you guys are coming from, and many questions still need to be answered.
It is frustrating, but it is progress none the less. And progress is always good to hear, at least in my opinion.
I myself have a positive smear with this bug, as many of you do. I am on Zith/Mepron, I have been for almost two months. It's a long road. I have been on ABX close to a total of 8 months, with still no drastic improvement but I have hope that Fry is on the right track, and he is clearly making progress on understanding what may be another link in this long chain of problems many of us are facing.
Again I wish I had more for you guys, i'm sure others have appt's on the way that can help fill in some blanks for me.
- Trevor
Posts: 59 | From Arizona | Registered: May 2008
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I was sort of starting to think they might be 2 different bugs, but just not sure. It is my understanding that both are gram-negative patogens but that is about all I really know. Of course the odds of hubby having 2 different mystery bugs seem rather astronomical but I just don't know.
The suspense continues.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
You have to wonder if Fry Labs and Clongen are working on two different mystery bugs what the heck is going on.
This does not make a lot of sense.
The reports from lymenet on Fry have always seemed questionable to me. Fry couldn't seem to identify the bug--and when shown to other microbiologists I can't remember what they said--artifact, perhaps?
Somehow, I have no reason to be suspicious, but I still am.
Whereas Clongen, I sort of trust just from what I've read, and looking at their website. They seem like a very classy "boutique" lab.
Who am I to talk:). But if the situation is so messy that we have two mystery bugs both of which are in some tick victims or which each lab claims is in most tick victims, then why not five or six or eight mystery bugs yet to be discovered? I mean, theoretically it is possible that ticks carry many many pathogens that are key, not opportunistic, and that every patient has an entirely different soup, but that would mean decades of work....
What I'm saying is, for two labs to isolate two different bugs and both claim the bugs are in most of their patients' blood and for us to think that maybe this bug is the answer to refractory "lyme", I don't know.
Anyway my betting money is on Clongen.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Hubby was thinking that maybe it is 2 different strains of the same bug -- for example several people have 2 strains of bart or 2 strains of babs -- so why not 2 strains of pseudomonas if that is really the mystery bug?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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If you have read many of the posts made by LymeMD to his blog then his prejudice against the Fry Lab comes through loud and clear. I am not a microbiologist. However, just because someone doesn't tell all they know on a website doesn't influence me much.
What I am looking for is results and information that is useful for diagnosis and treatment.
The way I see it -- in the beginning Fry was seeing something on bloodslides that noone else was seeing -- the main reason is because noone else was looking.
Seriously -- who had a bloodslide looking for Babesia or anything else before they used Fry labs?
His lab has a CLIA license -- hubby's insurance paid something on the testing.
I think I read that he had developed and patented a special stain that his lab uses. He has been studying this pathogen for 11 years I think and only offered the tests to the public in the last couple of years.
He did not start out with state of the art equipment but has upgraded as he could afford it. He now has a PCR machine -- have no idea what these cost, but I am sure it is a substantial investment.
I personally hope Fry is the one who gets to name this new pathogen.
If Fry Lab now has a PCR test to test for this new pathogen then I will get hubby tested again through Fry to see if he has 1 or 2 different pathogens.
I also like Dr K at Clongen Labs , but at this point I am not putting all my eggs in one basket.
If Fry is correct and the pathogen has a biofilm then that explains a lot as to why people are not getting well. If the antibiotics do not get to the target they will not work regardless of whether they are oral or IV.
I'll get off my soapbox now. I must admit that LymeMD's attitude bothers me sometimes.
Bea Seibert
Note: Hubby was on Bactrim at the time of his testing from Clongen -- 3 times weekly for 2 months and then 6 times weekly for 8 months. I just don't think we can know what meds will work until we know what pathogen we are dealing with.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Bea...
Most pathogens have the ability to form biofilms, as well as latent forms or forms that look very different from their active replicating forms. E. coli in the bladder for instance changes so much in the presence of cranberry extract it no longer looks recognizable, and it also has the capacity to go intracellular.
There is nothing *unusual* about all this and there is not, I suspect, some pathogen that is unique because it forms biofilms.
The question is, with all the fricken antibiotics lymies take, I mean almost every one in the book, what pathogen might be universally afflicting so many lymies and not succumb? That will be interesting to find out.
That's why I speculated on the worms and the microsporidia. Because then if you didn't address the worms, they'd be happily multiplying, and spawning more bacteria, and that might explain relapse and inability to get off abx. Just a thought of course and c. elegans is nothing like microfilarial worms.
I know how you feel about Lyme MD but the fact is he's a lot more scientifically oriented than most doctors. He has the typical arrogance of most doctors, like my dear ex-hubby . Who said to me quite cheerfully that the doctor's motto is: "I may be wrong but I am never in doubt."
So sometimes he says sort of dumb things like he did about cipro, and he to me seems narrowly focussed on drugs drugs drugs, but nonetheless--he is reasonably priced and trying hard to understand stuff and his blog is really interesting. So I forgive him his sins as clearly I have mine too etc.
I am hoping for fascinating answers soon. I see I'm posting again. What the heck. I didn't sleep well last night and I'm trying to read a scientific paper on earthworms and its freezing here and I'm not concentrating very well!
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Bea-I just posted that thread because it had some info about hemobartonella, nothing to do with any prejustice against Fry Las.
I thought there were some interesting comments in the blog, one of which the woman says she's getting better, but unfortunately she didn't say what antibiotics she's taking.
Thanks for sharing this very encouraging info.
sunny
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Thanks for you objective reports, Bea. I only hope that your husband has all the resources available to him to get the treatment he needs. You have both suffered greatly.
Just some thoughts regarding issues in this thread.
Dr. Fry doesn't routinely Rx EDTA. I've heard him use it on one patient. But, I don't know his business. I've only had one contact, and that was three years ago. He said he doesn't use it any more, but maybe he is now.
When we first started going to him three years ago, he told us about biofilms. I brought that information back here and was quickly pounced on. (There was one person on this board who felt it was their life's work to get everyone to supplement magnesium).
One of the reasons he told us to stop supplementing with magnesium, was that builds the biofilm. At that time, my daughter was taking an epsom salt bath EVERY DAY for two months.
She looked like an inflated red balloon. Epsom salts are 100% magnesium. It took six months of sauna to get it out of her system.
We don't make a conscious effort to avoid magnesium, we just don't supplement. Her mag level is great.
After two years of treatment, there are no twitches or cramping some have said they get when they stop magnesium. She has never tested low.
She also takes enzymes, she tried heparin for a while. That was really helpful, as her blood was like sludge.
Some antibiotics naturally punch holes in the biofilm layer. I know zithromax did that for me.
Dr. Fry is adding an antimalarial to all his abx protocols. For my daughter, this caused her minocycline to get a boost, and she's been functioning much better. Mepron was bad news for her.
Personally, I would be disappointed if Fry didn't get to name this bug (if they are going after the same one), he has been telling us for years that he felt it was something bartonella like.
People in our local support group, who didn't want to go to Dr. Fry because he felt "chronic lyme" was due to a mystery bug that was vector born (not just ticks), had their blood tested by his lab and found they were ill with things that IGENEX didn't catch.
Some were surprised to find they had erlicchia. Some were surprised they carried the triple B punch of Bart, Babesia, and Borrelia. Our group leader had been treating with herbs for years, and it was failing him. He is now making progress on antibiotics.
Nevertheless, I'm thrilled that there are more labs taking this disease seriously and looking for ways to fight it.
We will all benefit from this support.
And, gale, sometimes you can't go public with information until all the i's are dotted and t's are crossed. There are legal reasons...there is no conspiracy!
I don't mean this disrespectfully, but, what is your country doing to help? You have done nothing...I mean NOTHING but try to destroy the reputation of this doctor.
Is there one time where you supported anyone on this board? Any board? Have you reached out to comfort anyone? Give some helpful advice? No. Every single post you have ever made was with regard to Fry Labs and it's integrity. Questioning is good, we aren't supposed to be lemmings. But, it seems you have this lab in your crosshairs. It's becoming suspect.
Can you tell I'm angry? I'll delete this thread if moderator thinks it's appropriate. But, I'm tired of this person's agenda.
But, Bea, love ya, and I am looking forward to finding out what Clongen comes up with. If there are two bugs we need to deal with..then, yippee, we can deal with it.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
kelmo-is your daughter taking Plaquenil with minocin? One of my doctors recommended plaquenil for me, but because of the possible eye side effects I opted for IVIG instead. I've had over 27 eye surgeries and am afraid to take any meds that could affect my eyes.
Thanks for the reminder about not taking magnesium. I've read that before. You said that your daughter is doing well. Is she doing very well? I hope so!
Best wishes!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Hi sunny. My daughter gets her eyes checked every six months.
She has had three eye surgeries. She was born crosseyed, but that's been fixed.
We have a family history of detached retinas, so, yes, it's a concern.
She is doing well, but not symptoms free. What we are dealing with now is inflammation in the spine. All disks are bulging and she has developed a cyst (syringomyelia).
If she can get that pain under control, she will feel like a new person.
Three years ago, she was bound to the couch. She was very ill and in pain over her entire body. She did the last two years of high school sitting at home.
This semester, she is finishing her third semester of taking oncampus classes at the community college, a full schedule, and getting A's.
But, like I said, she is limited due to the spine issues.
Minocycline has been a great drug for her. It was starting to wane, so adding plaquenil has given it new life.
27 eye surgeries??? Yikes.
Take care Kelmo
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Kelmo-thank you for your reply. Your daughter has been through quite a lot for her young age. Three eye surgeries for such a young person have to be very difficult. She's lucky to have you taking such good care of her.
Yes, the retina problems were my concern and also concerned my doctor. I don't think the problems are that common, but definitely need to be watched. A family history of detached retinas certainly makes things more precarious.
These diseases must cause back problems. I fell awhile ago and have had three back surgeries. One of my cousins was recently diagnosed with Scleroderma and she can't even stand up straight because of terrible pain. She will be operated on in the next couple of weeks.
Do you know if the inflammation in the back is related to the lyme? My cousin's spine surgeon is not sure if her Scleroderma is causing the back problems. So much we don't know.
I'm glad that the minocycline has helped your daughter so much and that she can take classes from home. Going from being bed bound to being able to handle a full schedule of classes is wonderful. Hopefully she will be able to continue at a college and have the wonderful experience. I'll talk to my doctor again about the plaquenil. Thanks for letting me know about how it helped your daughter.
Yes, 27 eye surgeries caused by uveitis and glaucoma. I just had my fifth cornea transplant on Wednesday. It was the first one in my better eye and I'm praying that it starts working soon.
Best wishes to your daughter for a full recovery and getting the back pain under control immediately.
Kind regards,
Sunny
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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I would be very interested to know where Clongen's 'mystery bug' was found in your hubby(e.g. intracellular to erythrocytes).
Fry's 'mystery bug' is always reported as being attached to the outside of erythrocytes. I previously worked as a microbiologist and this is very unusual for bacteria. I have confirmed this with pathologist friend who believes Fry's findings are likely some sort of non-viable debris in the smear. I also received the same feedback from a microscopist who reviewed pictures of his smears at a well-respected teaching hospital.
Although I'm a skeptic about the potential pathogenicity of the organism Fry is researching, I continue to keep an open mind and still greatly appreciate the work these labs are doing. I also want to note that I have personally spoken to Dr. F (not as a patient) and I don't question for a second that he has good intentions and that he cares about his patients.
[ 08. December 2008, 09:06 AM: Message edited by: KS ]
Posts: 561 | From mass | Registered: Jul 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
bea-
marnie posted a while back bart FEEDS on calcium not mag...
do a search.
i know since then ive avoided calcium as much as i can ive had some + results.
with as bad a case as bart your hubby looks to have, maybe you should look into it.
cheers
derek
ps-
even if they do find and label a new mystery bug, what is the difference?
not trying to rain on anyone's parade, but as lyme patients we already utilize all avail abx EXCEPT for one reserved for rare and abx resistant infections that are stored solely in hospitals and only avail thru the er drs and perhaps some ID docs who see mrsa and other resistant bugs...
i understand lyme is as equally resistant and deadly as mrsa but unfortunately the usa does not recognize this....
so, until then, im glad we have possibly found a new bug, but unless there's a novel new way to treat it it means very little in the scheme of things.
your husband is in my prayers bea
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
quote:marnie posted a while back bart FEEDS on calcium not mag...
I believe it can be both. Here is a quote from an abstract.
An examination of the influence of several divalent cations on the antibiofilm activity of EDTA indicates that magnesium, calcium, and iron protect P. aeruginosa biofilms against EDTA treatment. Our results are consistent with a mechanism whereby EDTA causes detachment and killing of biofilm cellsPosts: 2903 | From AZ | Registered: Feb 2006
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posted
Kelmo, I had very bad low back pain for more than a year, to the point that I couldn't sit for more than 10 minutes. You can imagine how much fun it was to make long trips to the doctor, under this condition.
The thing that seemed to help me the most was the combo of IV zith and IV cleocin. Not sure this will fix up every lymies back pain, but it helped me.
KS, if you look up mycoplasma, you can find electron microscope photos of some species attached to the outside of the red blood cells. So, it does happen. Don't know if this a stage, which is followed by penetration, or what.
Posts: 8430 | From Not available | Registered: Oct 2000
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Thank you Lou. I'm hoping that the neurologist we will be seeing will recommend IV abx. My LLMD doesn't do them.
The neuro's new PA is from back is and is very knowledgable on Lyme. The neuro is very pathogen friendly, and is working with our LLMD.
Oh yes, wanted to add regarding the organisms sticking to the red blood cells....my first blood smear was clean.
After 6mo abx, my red blood cells had several black dots sticking to them. It coincided with a raging herx I had from taking one Rifampin pill with my last zith.
Posts: 2903 | From AZ | Registered: Feb 2006
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Reposting something here I posted on another thread. I'm not exactly sure what to think about the lab findings. Until I see hubby's actual lab report and the DNA testing is done I think we are just going to have to remain in the dark. Have a call in to Fry Lab to see if a PCR test is available now from his lab for his mystery bug.
-----------------------------------------------
Update 12/5
Since everyone had so many questions I called Clongen today to ask a few more questions.
According to Dr K at the lab --
The following pathogens should theoretically be visible on a bloodslide (as with any test there are limitations to the testing) --
babesia, malaria, bartonella, tularemia and the "mystery bug"
The following pathogens would either be too small or unlikely to be seen on a bloodslide --
Lyme, mycoplasma, rickettsia (includes Rocky Mtn Spotted Fever), Q fever, ehrlichia/anaplasma (could be mistaken for granules in the white blood cells)
Those pathogens not normally visible on a blood smear need to be tested by another method -- either antibody tests or PCR tests.
------------------------------------------------
Now, for his comments on the "mystery bug".
His lab will be unable to suggest antibiotic therapy -- he said that knowing the pathogen should be useful for this, but I don't think he really is aware of just how many things have failed for so many people.
Also, to test for antibiotic susceptibility the pathogen must be able to be cultured. His lab has been unable to do that so far. Not really sure how hard they have tried though, because that is not really where their expertise is.
The fact that he can't culture the bug makes me wonder if Clongen Lab and Fry Lab have found the same pathogen or not? I read somewhere that Fry Lab said the pathogen required arginine for growth. The only way he could know that is if he has in fact cultured the pathogen.
Also asked and Clongen could not say whether or not the mystery bug had a biofilm. Got the impression this is something the lab will be unable to determine.
The final question I asked was if the bug was attached to the red blood cells. Was told that it is not and that it is freely moving around.
Dr K is taking a week's vacation -- said he had literally been in the lab for 24 hours yesterday working flat out. Think he is trying to hire additional lab personnel.
I will probably not post again until after hubby's 12/16 LLMD appointment as I don't think there will be anything new to report.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
OxygenBabe posted that many pathogens make biofilms -- while that may be true, I did a quick search on PubMed and there is very little info regarding tickborne pathogens and biofilms. Borrelia, babesia, bartonella, ehrlichia, anaplasma -- little documented evidence that any of these form biofilms.
Many antibiotics do attack cell walls, but that is not the same as a biofilm.
There has to be something unique and different about this mystery bug -- otherwise it would not be so prevalent and so difficult to erradicate.
Hubby has actually had somewhat conservative treatment -- often only took one antibiotic at a time. However, since he has been in treatment for over 5 years he has tried a total of 25 different antibiotic/antiparasitic meds -- in many different classes -- some oral and some IV.
He has also used many herbs and done many alternative treatments including IV hydrogen peroxide, IV blood ozone and IV UVB blood irradiation
Hubby has never had classic Bart symptoms so I am not even sure if he really has Bart. Mycoplasma test results have been confusing as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
"Finally, we present and compare two widely used zinc chelators, CaEDTA and tricine, and show
why tricine should be preferred to CaEDTA
when studying fast transient zinc elevations as may occur during synaptic activity."
PMID: 18353558 Neuroscience. 2008 Feb 15.
"zinc-induced augmentation of glutamate-evoked currents"
Magnesium as NMDA receptor blocker in the traditional Chinese medicine Danshen."
"Glutamatergic receptors, specifically those of NMDA type-receptors, are closely related to excitotoxicity.
Thus, in some circumstances, ***an excess of Ca2+ influx through NMDA channels***alters neuronal metabolism and may become lethal for the cell.
Two other divalent cations, Mg2+ and Zn2+, have inhibitory effects on NMDA receptors.
Magnesium ions exert a voltage-dependent block of the NMDA calcium channel, whereas zinc ions exert a voltage-independent NMDA block.
In the present work, the effects of iontophoresis of Mg2+ and Zn2+ on the striatal response to SMCx stimulation were studied.
Moreover melatonin, an indoleamine with anticonvulsant properties and
inhibitory effects on the NMDA receptor,
was also iontophorized alone or in combination with Mg2+ and Zn2+.
...
When these cations were simultaneously ejected with melatonin, additive inhibitory effects were recorded. These observations suggest that the inhibitory effects produced by Mg2+ and Zn2+ and melatonin are produced via different processes, and thus the inhibitory role of melatonin on the NMDA receptor activity is exclusive of a direct action on the NMDA calcium channel."
What happens if Mg levels are too low and zinc is grabbed by Bb for use for its "zinc fingers"?
Bb metabolizes d-glutamate AND d-alanine.
The NMDA (glutamate) receptors are gated by several nutrients. Not to make it easy on us...these are the most complex receptors.
Bb also has "zinc fingers".
Bea...it appears Bb triggers a channel called TRPM8 which opens the gates to Na-Ca.
Far infrared...photons -> transducin (a G protein)-> Na-Ca channel closes.
When TRPM8 is "open", we feel cold.
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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posted
does anybody knoew what facts are regarding mystery bug. For a long time there have been rumors that scientific publication was "next week" etc etc Gale
Posts: 268 | From europe | Registered: May 2008
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