oxygenbabe
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posted
What's going on? Nobody ever did blood cultures on a lymie? I understand that bugs in tissue are hard to find but tons of motile bugs in blood or attached to blood cells should be visible on blood cultures, which are common enough when a patient has puzzling fevers and symptoms. It's not routine but it's not uncommon. Something is strange here.
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seekhelp
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posted
I agree. I'm getting suspicious of all the findings too.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My red flag is certainly raised but in terms of why Clongen/Fry is finding some of these things may just be that they are looking for an unknown versus most labs that are ordered to look for something specific. There are different techniques for preparing slides and staining them. So, one staining technique cannot show all organisms.
In my own experience, I've probably been tested for over 30 different infections through all of this. Only one smear was actually ordered and they were looking for babesia only.
Again, I agree we have a lot of questions that need some answers but I can totally appreciate why nobody has seen these organisms in us before.
Question is, are they even pathogenic??
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oxygenbabe
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A giemsa smear is for babesia which is intracellular. Blood cultures detect bacteria in blood.
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posted
Think I read somewhere that most bacteria cannot be cultured. At least not in currently used mediums.
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That is the whole point -- hubby never has had any significant fevers -- not even when he had symptoms of encephalopathy.
He did have blood cultures once because of his PICC line -- nothing found.
Never had blood slides done before Fry or Clongen -- because he did not have any elevated inflammatory markers which standard AMA docs rely on.
Since hubby either seems to produce few antibodies to anything -- or they are bound up in immune complexes (can't get doc to order that test) he doesn't present as someone with bacteremia.
Docs won't find something they are not looking for!!!!!!!!!!!!!!!!!!!!
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Blood cultures can be useless in that they rely on there being the appropriate media used (there is not one standard media that will grow all organisms) and also the environmental conditions have to be just right(aerobic vs anaerobic, incubation temperatures, etc).
I worked as a microbiologist for years and it is amazing how difficult it can be to culture certain microorganisms.
Posts: 561 | From mass | Registered: Jul 2007
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posted
I posted in the Mystery bug thread about Sphingomonas paucimoblis. It seems to fit the criteria that I seen posted about the bugs - gram negative rod, motile, aerobic (maybe why they are seen in proximity to RBCs?).
The really interesting thing about S. paucimobilis is that it does not have LPS in the outer wall - LPS is the endotoxin that is at least partly responsible for the fever reaction in bacteremia.
S. paucimobilis infections are not common, but not unknown either - there are plenty of case reports of multiple infections in hospitals. Various strains are resistant to some cephalasporins (ie. Rocephin), quinolones and other classes of antibiotics. Imipenem is the treatment that I saw listed most often.
Maybe that is something to rule out?
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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oxygenbabe
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posted
Geez Bea. Never had blood cultures done? Fricken A what is medicine coming to in this country. He's that sick and never had blood cultures. I've had them twice at my request. Once was during the anthrax scare here in NY when a few people died from contaminated mail and when I got a flu. I was obsessing and told my doc, it's better for me to get blood cultures and not worry for another week. She complied. The second time was when I was just having low grade fevers (which yes I had early in lyme) and felt really funky. I went to the ER and requested blood cultures and they did them.
I don't know, maybe they won't find a thing but it might be worth it to get blood cultures.
How would this finding change treatment? Well let's see how Clongen ID's the bug.
Posts: 2276 | From united states | Registered: Jun 2004
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I did see your other post. Haven't had time to read up on that bacteria yet.
However, hubby has done IV Primaxin more than once. Primaxin is Imipenem plus another ingredient -- forget the name of the 2nd ingredient right now. The most recent use of Primaxin (6 weeks done 3 times daily) was in Fall of 2007 -- after 2 positive Fry slides and before the recent Clongen slides.
The Primaxin did improve symptoms significantly, but improvement started going away within a couple of days of stopping that antibiotic.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Do not forget that it is not just about killing theses bugs.. ITs about how the bug acts inside of us and how we can create a multidiciplinary approach with all our information.
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IKHDAD
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posted
The information I have gotten from doctors and labs are not just about the bug. What toxins they create. What and how our bodies react. What else has been going wrong as a cycle and chain reaction and how we can support our bodies in all aspects at once to move towards being able to control these things that are affecting us inside our bodies.
Its so complex.
Use the knowledge you learn to create your own best treatment. And keep on learning..
Even the scientists are still running in circles around this and all disease..
Sadly.. Even the things we think in our mind are "treatable" Are not so clear cut.
Just remember that there are so many parts and if we dig and dig in hopes of finding something. WE will find something. But then that is attached to related to something else and it goes and goes on and on forever..
Take a step back and look at the big picture..
Its scary and so complicated and to see some on here who think
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However, hubby has done IV Primaxin more than once. Primaxin is Imipenem plus another ingredient -- forget the name of the 2nd ingredient right now. The most recent use of Primaxin (6 weeks done 3 times daily) was in Fall of 2007 -- after 2 positive Fry slides and before the recent Clongen slides.
The Primaxin did improve symptoms significantly, but improvement started going away within a couple of days of stopping that antibiotic.
Bea Seibert
The cilistatin in Primaxin is used to increase the half-life of the imipenem.
That is a lot of broad spectrum antibiotic for the bug to live through.
Why was treatment stopped after the Primaxin produced results? It sounds like it was having a significant positive effect, like you were on the right track.
Any word from Clongen on when the 16S sequence results will be available?
As the coordinator for the health care for my son and wife I have a lot of respect for what you have been able to accomplish for your husband. I think that you are closer to a resolution then you ever have been, I hope the answer comes sooner rather than later.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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At the time we were using the Primaxin as a Lyme treatment. Then we tried to move on to treating what we thought was bartonella or BLO.
That is when things really fell apart. Hubby started having pretty much uncontrollable muscle rigors and after several ER visits and a total of 78 days in the hospital his PCP fired us as patients. We also ended up switching LLMD's as the one we had then was too far away and he just didn't know what to do anymore.
Ended up seeing a neuro (Dr Y) in New York which was a big mistake. Had one emergency appointment with another New York LLMD who prescribed the Levaquin.
Eventually found our way to our present LLMD. Then tried treating Lyme, Babs and Bart all at the same time with a 5 drug combo. Up til then we had always pretty much just treated one infection at a time as hubby is so sensitive to meds.
Gradually added one med at a time and slowly ramped up the doses over 8 months and then everything crashed again on 10/5.
I am not sure at this point which way to go med wise. Obviously nothing has killed the bug. I don't necessarily agree with LymeMD though. I think some things may have been bacteriostatic and not bactericidal.
Impossible to say with certainty since there is no test to measure the quantity of the pathogen. If Clongen took pictures that might give some info, but without knowing how quickly this pathogen multiplies it is hard to quantify progress.
In the past we have actually been fairly conservative med wise -- often just used one antibiotic at a time. I am getting concerned that our current LLMD will not be up to treeating this new pathogen.
While we are waiting on the lab -- my guess is that the DNA info will be available before the first of the year -- we are going to try a few herbal things and just try to be patient.
I do think that even though this new pathogen is not Bartonella it does respond somewhat to the meds traditionally used to treat Bart or Mycoplasma. I am just not sure at this point if blasting the bug is the way to go. Hubby is on way too many symptom control meds already and I don't know of anything else that could be added to get him through a really rough herx without hospital supervision.
If it has an efflux pump which seems to be somewhat indicated then that complicates things drastically -- and is probably the reason for antibiotic resistance.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
the reason that it is not found is due to these reasons below:
1)in every case your blood is checked by a machine! it cannot look into the red blood cell! believe it or not it is true..
2) they will claim if they see it as every one has parasites to keep from bieng held liable for anything..
3) the doctor has no idea what babesia is or bartonella or lyme and this is true for most infectious disease doctors..sad but true!
4) you dont have a fever so therefore there is no infection...sad again but true..
5) I could go on and on but dont have time..just believe me when I tell you that you know more then the doc... Posts: 593 | From long island ny | Registered: Apr 2006
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oxygenbabe
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posted
Not so. After I tested positive by Fish for babesia at Igenex I had the head pathologist at the hospital personally view my Giemsa smear. I didn't know if I wanted to treat, and I decided if she saw babesia I would. She didn't, meaning my infection is either really low or latent.
In addition I'm not talking CBC. I'm talking blood cultures.
posted
Hubby had a brief conversation with Dr K at Clongen today. Apparently he has been in communication with the Fry Lab recently. Neither microbiologist is totally sure yet if they are seeing the same mystery bug or not.
Per Dr K the CDC and NIH have also been in communication with both labs and are also eagerly awaiting the DNA sequencing info.
Got the impression Dr K may have some news within the next couple of weeks.
Bea Seibert
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hiker53
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posted
Bea,
Thanks for keeping us posted. Have a Merry Christmas. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8929 | From Illinois | Registered: Aug 2004
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oxygenbabe
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posted
That is terrific news about the CDC and NIH. I am thrilled they are interested and hope they can confirm it.
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hiker53
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posted
Glad the CDC is finally taking an interest. I sent them my photo of the Fry blood smear back in June and they laughed and said the bacteria were not bacteria or I would be dead by now--just stain artifact.
Maybe they are wising up.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8929 | From Illinois | Registered: Aug 2004
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Spoke with Fry labs the other day and they told me everything they know with regard to this new bug should be published (peer-reviewed) and available within the next couple of weeks. They encouraged me to contact them routinely to find out when it is available so that I can get my hands on it.....
Posts: 561 | From mass | Registered: Jul 2007
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Update on the new bacteria. It is classified in the same genus class as Burkholderia Cepacia, the same bacteria found in Cystic Fibrosis patients. It has a cell wall and is gram negative. The reason we all have band #41 positive is because it has a tail "flagella like". The new name for the organism is betaprotearheumatica. It will probably be renamed very soon. It creates a biofilm and feeds off arginine.
The research has went from small to very expansive. Grants are in and more scientists have been hired. Blood samples from the people sick are already in test tubes and DNA sequencing is being used. New drugs are being used and biofilm communicators "busters" are in the works. Biaxin and Plaquenil seem to be the drugs of choice, since so many are feeling better rather quickly.
Many doctors believe this organism should be called "chronis lyme", since it is what is probably causing all the "chronicity". The devasting effects and resiliance to survive are pushing this organism to the forefront.
Doc said that 80% of people who sent their blood for sampling had this bacteria on the smear, but 100% of people had positive DNA results for the new bug.
Posts: 25 | From Lorton, VA | Registered: Aug 2006
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oxygenbabe
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Thanks, maybe one more piece of the puzzle. I hope they work with Clongen and it's the same bug, and with NIH and CDC. I wonder, though, many lyme patients do go on biaxin and plaquenil and wouldn't docs have noticed already if this combo was supremely effective? Also, is this an opportunistic bug (you say it is similar to cystic fibrosis bugs). And is it in the tick--or ticks from particular hotspots in the US?
Posts: 2276 | From united states | Registered: Jun 2004
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posted
I can't help but wonder whether many of us without truly positive lyme tests (i.e. positive ELISA AND positive western blot including IgG response)aren't maybe just dealing with this new bug and are cross-reacting with the lyme western blot. I guess time will tell.....
Posts: 561 | From mass | Registered: Jul 2007
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posted
This information is from Fry Labs, Snake is a patient of Dr. F. I agree people have been on the Biaxin/Plaquenil combo, and are they feeling better? Time will tell how important this information is with chronic lyme symptoms. I was hoping someone on this site may be a patient of his and have more information??
Posts: 25 | From Lorton, VA | Registered: Aug 2006
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posted
I've got positive RT-PCR for borrelia, FISH for borrelia (also a way of direct detection) and some positive antibody tests for borrelia. And a 'positive' Fry smear for what they used to call bartonella and as I understand it now call 'betaprotearheumatica'.
I have been using zithromax and plaquenil for almost two months without any significant effects.
quote:Originally posted by seibertneurolyme: tcw,
I did see your other post. Haven't had time to read up on that bacteria yet.
However, hubby has done IV Primaxin more than once. Primaxin is Imipenem plus another ingredient -- forget the name of the 2nd ingredient right now. The most recent use of Primaxin (6 weeks done 3 times daily) was in Fall of 2007 -- after 2 positive Fry slides and before the recent Clongen slides.
The Primaxin did improve symptoms significantly, but improvement started going away within a couple of days of stopping that antibiotic.
Bea Seibert
What dose did your hubby use? I am thinking about starting up with that abx...
Posts: 275 | From Home | Registered: May 2007
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Hubby used the standared dose of IV Primaxin -- 500 mg 3 times per day (every 8 hours). Did this 7 days per week for 6 weeks.
This med was a little strange for him. The first dose --early a.m. -- didn't cause much response -- sometimes actually made him feel better. He almost always had a seizure-type reaction during or shortly after the 2nd (afternoon) dose and the nightly dose seemed to make him feel better about 50% of the time and worse about 50% of the time.
Bottomline is that hubby had a similar response to the IV Rocephin he did in 2003 -- some improvement while on the med, but neuro symptoms started deteriorating within a week of stopping the med.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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btmb03
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posted
I have learned more on this thread than any other. Thank you for such valuable information to those who contributed to it. More ammo to take to the doc now.
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posted
Anyone have any more info on this?
Posts: 116 | From Ann Arbor, MI | Registered: Nov 2007
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CD57
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posted
This is fascinating. Lets hope the NIH and CDC get involved and do some funding to figure out what the hell kills this thing! And....is this the "BLO"? Some people really do have bartonella, b. henselae or b. quintana. Do they also have this mystery bug?
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