Anyone else have this finding from Clongen or any other lab on a blood smear?
As many of you know hubby has been ill for over 9 years from Lyme, babesia, bartonella or BLO or mycoplasma and Borna Virus. He has done many different treatments - everything from IV Rocephin to IV colloidal Silver (Argentyn 23), plus numerous herbs and other alternative treatments such as IV hydrogen peroxide and IV ozone.
For the past 2.5 years hubby has been treating bartonella (or whatever the mystery pathogen is as seen by both F lab and Clongen lab multiple times) with multiple oral antibiotics and herbals. He has had some improvements (Parkinsonian tremors and myoclonus mostly gone except for daily middle of the night attacks). But hubby seems to be stuck and his LLMD seems to be running out of ideas.
On 6/15 hubby stopped at Clongen after his LLMD appointment and repeated his blood smear. We decided the $100 was affordable at this time, but didn't think we could afford the $633 for the Galaxy Diagnostics test and also his LLMD did not want to stop antibiotics to do that test at this time.
I guess you could say the new report has both good news and bad news.
Wet Mount Examination Results
1) Very rare motile small extracellular coccobacilli were observed (one in every 20 fields at 100x oil)
My interpretation - rare means few in number. This is good news as the previous report dated 12/08 used the phrase ``numerous''. We expected improvement since hubby has had improved bloodwork since going back on Factive. His RBC and hemoglobin and hematocrit have all gone up and stayed in the normal range for over 6 weeks now. Also WBC increased to normal as well. And total bilirubin went down to normal - less red blood cells were being killed off. LymeMD has stated that he feels that this bacteria is some form of bartonella or the infamous BLO.
The combination of Factive and high dose Rifampin seems to have helped the most with this bacteria. Neither med alone did much to change bloodwork.
2) Very rare distinct dumbbell shaped motile extracellular organisms (constricted center and bulged termini) were observed (one in every 20 fields of 100x oil).
My interpretation - rare in this instance means few in number and also that the bacteria is an unusual finding. Per Dr K at Clongen he examined hubby's blood within an hour of drawing it and actually spent an hour or so looking at his slide. He was not expecting this test result. He kept telling us how much better hubby looked than the last time he saw him back in 12/08. Dr K does not think this is an artifact or any type of bartonella or ehrlichia. He has no idea what this bacteria is. Has only seen it a few times in patients who have been treated longterm for tickborne illnesses and do not seem to be getting well.
Dr K did give us the name of an LLMD in England who has also seen this dumbbell shaped bacteria in some of his patients and has lectured on this finding.
Now that hubby is home from the hospital we plan to try contacting various researchers to see what we can discover about this other unknown bacteria. Hubby is getting tired of being special and being known as a ``Strange man with a strange presentation'' as one doc put in his office notes in the past.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Wanted to add -- Dr K is in the process of enlarging his lab. I thought he said he was adding 200 square feet and hubby thought he said 2000 square feet. Anyway, Dr K said he hopes to finish expanding the lab this summer and then should have more space to devote to trying to identify some of the mystery pathogens.
Bea Seibert
Posted by Myco (Member # 9536) on :
My guess is an altered form of Mycoplasma.
Posted by BHealthyNow (Member # 22537) on :
Thanks for directing me here. So what exactly is a mycoplasma?
Posted by mjbucuk (Member # 843) on :
Bea, your mailbox is full. I am sure you have been receiving lots of messages from those wishing you and your husband well!
I have a PM I had tried to send you....
Posted by galehane (Member # 15437) on :
I have the same findings from DR K. however ,I have a positive pcr for Bartonella. I believe they are the small coccobacilli. I wonder if the bumbbell-shaped ones are also some bart spp. Some of the bart spp have that dumbell shape.who knows,maybe it is part of everybody`s flora?
the English guy is one Andy Wright- a LLMD,dont think you get any wiser from reading his comments.
[ 07-11-2010, 03:12 AM: Message edited by: galehane ]
Posted by springshowers (Member # 19863) on :
I believe "bartonella" has nothing to do with the unidentified bacteria that is talked about here and there..
I do think that maybe some people should consider getting the smear and pcr tests for the protozoan that fry labs is seeing and make sure you treat that as well because it is being now described as the culprit of many of the symptoms that was once thought coming from the bacterial infection which now is supposidly taking a back seat as far as importance and as far as causing our troubles.
I used supposidly and maybe and could be .. on purpose as we all know nothing is proven or set in stone.
I have no idea why people keep connecting bartonella with any of the mystery infections except for a misunderstanding of the word used on some of the fry results naming it hemobartonella.
By the way which is not related or the same or same test or treated the same as the protozoan.
I have responded to treatments that are anti protozoans and i am sure we all have different issues but it might do some worth a lot to look into the new protozoan infection and get tested and try to direct your treatments towards it..
For Bea I know your husband has had quite a unique situation going on and I bet you are very tired indeed.. But its great that you do not give up !!1
Posted by galehane (Member # 15437) on :
Dont know what other people have. But the reason why i talk aboput bartonella is because I know i have bartonella.What reamins I dont know. i would like to treat any protozooan if I knew what it was and how to treat it. Did exactly what you recommend.Only there is still no visual of the alleged protozooan, no identification,no other test for it(you are the only one who has had a pcr for it-and you cant tell about it),no publication and treatment?? As it says on the lab report "for research only". We have been over this before time and time again.People are sick and tryin to do their best.
the only thing to do is hoping for some publication from the lab- considering your advice in another post not to discuss it in this forum.
[ 07-11-2010, 10:42 AM: Message edited by: galehane ]
Posted by seibertneurolyme (Member # 6416) on :
Springshowers,
There are many reasons people think the mystery bacteria are bartonella
1) The bacteria are described as coccobacilli -- the shape of most bartonella bacteria
2) Previous research by the LLMD gastro Dr F who first identified BLO (bartonella like organism) I think
3) The bacteria seem to respond somewhat to bart treatment -- meds and herbs
4) Before the F lab changed their reports to use the term haemobartonella -- they initially used the term bartonella as was reported in hubby's first F lab bloodslide back in 2007
Reasons why it might not be bartonella
1) No positive PCR -- could be an unidentified species though I think
2) The bacteria are extracellular (outside the cell) -- supposedly bart are intracellular -- but maybe this is just a part of the replication cycle?
Just wish more researchers were taking these unidentified bacteria seriously.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
BHealthyNow -- Google Garth Nicholson and mycoplasma. Another stealth infection which is very similar to bart and is often found in tickborne illness patients.
Galehane -- Hubby shares your frustration. He finally has some lab tests that are abnormal and noone knows what to do about them. Yes - Dr A.W. is the name I was given -- haven't had time to contact him yet.
Bea Seibert
Posted by galehane (Member # 15437) on :
seibetneurolyme I know that the extracellular bugs are bart in my case.A veryy rare spp. There arent that many bacteria you can have in the blood-stream without having sepsis.
Posted by D Bergy (Member # 9984) on :
Bartonella is the most commonly known Lyme co-infection. Statistically, if you have a co-infection it is most likely to be Bart.
Of course statistics only apply to most people but it is good to know the odds in any case.
Dan
Posted by Myco (Member # 9536) on :
Springshowers - What kind of Anti-protozoan treatments are you responding to? Bactrim?
Posted by springshowers (Member # 19863) on :
Read here for some descriptions of a recent conference and Dr F who was speaking there has described his subject matter..
1. The BLO/MYSTERY BUG/HEMOBARTONELLA blah blah that has been going on for years..
2. The Parasite found in new smears that is FULLY SEPARATE and a SEPARATE test and shows up in bioflim visual in test that is called FL1953
I am NOT The only one who has done a PCR I have been contacted by other patients I know of who have been able to order a PCR test for the protozoan.
ITs up to you to call the lab and find out about it and maybe something has changed I do not know about and it was available and not anymore. I am not sure and have not asked about it since my own testing back in Jan/Feb.
But it does exist as a smear and Pcr both ...
[ 07-14-2010, 02:10 AM: Message edited by: springshowers ]
Posted by BoxerMom (Member # 25251) on :
Here's a very old article about a dumbbell-shaped pathogen isolated from ticks in GA in 1961.
It says it could be a mycoplasma.
It also has tons of pictures.
I think a lot of fungi reproduce by budding, and would go through a phase in which they look like dumbbells.
I've also read that strains of Chlamydia have a central pole with enlarged ends.
Posted by Haley (Member # 22008) on :
Hi Bea,
Gosh, you and your husband have been through a lot. I have thought about your situation many times.
I admire your persistence and your love for your husband.
We are dealing with microscopic organisims that are more intelligent than any human being on the planet. It's so ironic that this would be in the shape of a dumbbell.
It sounds like you have tried just about everything. Hopefully this most recent smear will guide you to some solutions.
Please continue to keep us informed.
Looks like Boxermom may have some good information.
Posted by seibertneurolyme (Member # 6416) on :
Boxermom,
Thanks for the links.
Don't think it is a fungal issue -- but not ruling anything out at this point. Hubby has no fever and his WBC is normal.
The link regarding the mouse cataract agent is interesting. Hubby turns 55 on July 24. He does have mild cataracts on both eyes which showed up a couple of years ago -- eye doc says most likely from free radical damage due to his tickborne infections.
Bea Seibert
Posted by BoxerMom (Member # 25251) on :
Bea - Good luck with your continued sleuthing.
I wouldn't rule out a fungal culprit, either. Once you have Lyme on board, other pathogens don't behave like they are supposed to.
With us, it seems that even a low-level infection (few organisms) can cause serious symptoms, while barely activating our immune systems.
Maybe it's the mycotoxins. Or the pathogens inhibiting our immune responses. These microbes swap DNA like crazy. They are evolving to survive.
Science is absurdly behind in the study of TBIs. A woman in my support group said we all basically have PhDs in TBIs, with all the research and self-treatment we do.
You are definitely in that category!
Best of luck, and keep us posted.
Much love, BoxerMom
Posted by galehane (Member # 15437) on :
Really difficult as none of us has ,in fact, seen the bug.
Springshowers Please understand that this is not in any way personal.But I (and others) are frustrated. Naturally, we try to get as much correct info as possible to get well. Now the protozoa can not bee seen in t-he special smear (have a look at the F website- the white dots are leucocytes), so your pcr was positive (not offered among the lab`s services).For what kind of protozoa?
[ 07-12-2010, 04:20 AM: Message edited by: galehane ]
Posted by galehane (Member # 15437) on :
the dumbbell shaped organism that Andy Wright has observed is described in a very different way than the ones observed by Dr K.It grows to be much much larger.No connection,I think.
Posted by D Bergy (Member # 9984) on :
I placed an inquiry about this organism to a researcher I know, and this was the response. Do you know the relative size of the organism?
Hmm, I do not know offhand what this might be. It is however reminding me to some extent of the pictures I have been looking at, of the Cryptococcus neoformans. At one of its many stages, it produces an offshoot from hyphae, with a bulge at the end which contains new spores. The spores eventually move out of the bulged area and are released.
But what's described below indicates bulging at both ends, so that would be different. If I come across anything with that morphology, I will let you know.
It would help to have relative sizes though. For instance, the "Fry organism" which is a hemobartonella, which has now been re-classified as a separate class of mycoplasma...is a very small bacteria, just a spec that shows up along the edges of RBCs. If we could have some general idea how big the dumbbell organism is, that would help. For instance, how big in comparison to RBC size?
Posted by Marnie (Member # 773) on :
"When bacteria are placed in unfavourable conditions as regards food, etc., growth and multiplication take place with difficulty.
In the great majority of cases this is evidenced by changes in the appearance of the protoplasm.
Instead of its maintaining the regularity of shape seen in healthy bacteria, various aberrant appearances are presented.
This occurs especially in the rod shaped varieties, where flask-shaped or dumb-bell-shaped individuals may be seen.
The regularity in structure and size is quite lost."
Culturing it on a good growth medium (supplying it with missing nutrients) should result in a retroconversion to its normal shape for identification purposes.
Posted by galehane (Member # 15437) on :
it is approximately 6 microns
Posted by seibertneurolyme (Member # 6416) on :
Curiouser and curiouser -- Hubby just got off the phone with Dr K at Clongen.
Per Dr K -- the organism is 4 - 6 microns in size -- RBC are approx 8 microns. He has been unable to culture this organism. Is leaning towards it being a parasite rather than a bacteria. However -- does not show on giemsa stain -- blends into the background. Also does not show on parasite stain.
As to the shape -- resembles clostridia bacteria - the closest thing he could think of.
Has recently found the same organism in another patient since hubby.
Thinks it may possibly be the same organism seen on the video made by A.W. in England in 2002.
Defintely says that due to the large size of the organism it could cause bloodflow issues and severe neuro problems.
Hubby has not been on any antiparasite meds for about a year now. Have to wonder if the Tindamax was trying to work on this organism if in fact it is a parasite.
Bea Seibert
Posted by springshowers (Member # 19863) on :
The Protozoan is Seen in the smears
It is a different smear that the one for the Hemobart and that older smear type.
They are seen within the biofilm and are much different than the hemobart. Some tests show the protozoan and some hemobart in and around the area
Pretty cool
[ 07-14-2010, 02:03 AM: Message edited by: springshowers ]
Posted by louisep (Member # 17272) on :
Bea, yes me and my partner saw AW in the UK 18 months ago. He saw the dumbell shaped organisms in my blood and "strings of pearls" in my partners blood.
We left with a report saying these organisms were thought to be Borrelia like spirochaetal forms (BUT NOT diagnostic of Lyme disease). He mentioned coccoid bodies as being part of the life cycle of the spirochete. He may have changed his views on this since however!
We had Dr. K at Clongen look at our blood shortly after this and he saw the dumbells and numerous highly motile extracellular organisms.
Dr K also looked at my then 5 year old sons blood and he had both of these organisms as well so whatever they are I appear to have passed them to him.
Good to hear your hubby has had some improvement in his symptoms and that "numerous" has been replaced by "rare" which seems to be definite progress.
Posted by blinkie (Member # 14470) on :
springshowers-I think one problem is that these organisms are not being used by name(understandably, some don't have identification yet) 1)In any case, can you please name the protozoan by name. I think this would help clear things up and people will know what test to ask for.
2)there is not one place for any of us to get regular updates regarding what Dr F is finding and when things change, many people are not up to speed.
As clear as one tries to be when typing responses, sometimes,they are not clear to the reader.
I think what you are trying to say is...
1)there is a protozoan (which has a name but you have not said what that is)which responds to malaria/babesia meds.
2)there is a hemobart with a tagalong
3)there is a dumbell shaped organism
Am I missing anything?
Posted by blinkie (Member # 14470) on :
btw-I haven't had the smear done but recently made huge improvements with anti-malarials.
sorry, Bea, this has nothing to do with your post about the dumbell organism.
Posted by springshowers (Member # 19863) on :
"Very rare distinct dumbbell shaped motile extracellular organisms (constricted center and bulged termini) were observed (one in every 20 fields of 100x oil)."
"Dr K did give us the name of an LLMD in England who has also seen this dumbbell shaped bacteria in some of his patients and has lectured on this finding.
Now that hubby is home from the hospital we plan to try contacting various researchers to see what we can discover about this other unknown bacteria."
I do not have info on this dumbbell shaped bacteria.
Bea Can you post any pictures or such as to what this Dumbbell bacteria looks like.
It sounds like a whole new bacteria and I do not have any knowledge of Fry labs seeing this or any other lab besides what you mentioned.
Posted by seibertneurolyme (Member # 6416) on :
Springshowers,
Unfortunately Dr K at Clongen does not take pictures of patient blood smears. Not sure if he has a camera or not.
Makes it very difficult to know if Dr F and Dr K are seeing similar organisms and describing them differently.
It is definitely looking like we are going to have to find the $'s somewhere to have more testing done -- I don't want to spend thousands of dollars on IV antibiotics if the organism is a parasite and not a bacteria.
Now that I have a little more info from Dr K I will be contacting the F lab and other researchers to see what specialized testing is available.
Louisep,
Thanks for sharing. Yes, hubby has had some improvements from treating the coccobacilli. Unfortunately, though the 2nd finding (the dumbell shaped organism) is new. Did not show on previous bloodslides. Most likely it was hidden by a biofilm or possibly hiding in the tissues.
D Bergy,
Thanks for bringing up the question of the size of the organism. A very important point. The large size makes me think maybe parasite instead of bacteria.
Blinkie,
I agree -- it would be very helpful if the F lab parasite has a name if that name was available to patients.
Bea Seibert
Posted by hadlyme (Member # 6364) on :
As Springshowers stated... it is pretty cool to see one's protozoan. I have seen my 'bug' also.
Tests were done at Fry labs.
Posted by galehane (Member # 15437) on :
Hadlyme. So, the obvious question is; The thing you saw- Was it anything like what we are talking about now (dumbbell-like)?
If there is any connection between the dumbbell thing and the Fry thing (we dont know as we dont know what the F-lab thing looks like-In my special smear nothing specific can be identified as a protozoa or dumbbell shaped thing) it would, of course, be nice to know the identity of the F-protozoa (FL1953???)
I`ll gladly pay 100 dollars for the person that can get a straight answer from the F-lab.What kind of parasite is it.Obviously the lab thought it was related to toxoplasma at a point.
Chances are that it is research,has been all the way.dont doubt that F.lab is onto something just wish it would be clearer what it is and what to do about it.Biofilm ,protozoa etc etc.
[ 07-14-2010, 11:18 AM: Message edited by: galehane ]
Posted by galehane (Member # 15437) on :
Some bacteria have internal compasses, made from a chain of magnetic iron crystals ... with the discovery of dumbbell-shaped bacteria that flout convention. ...
The above is from an article in "Nature".Maybe somebody can access the magazine and tell if this has any interest?
Posted by springshowers (Member # 19863) on :
THE CYTOLOGY OF RICKETTSIAE
Posted by seibertneurolyme (Member # 6416) on :
Hubby finally got thru to one of the researchers at F lab.
Per his discussion -- F lab parasite is NOT dumbbell shaped. It is ovoid (oval) shaped and measures between 2 and 15 microns and is often found within biofilm.
The researcher does think that if hubby's organism is 4 - 6 microns that it pretty much has to be a protozoa -- way too big for a bacteria.
Electro-dermal testing devices allow us to assess using galvanic skin response.
I have posted before about this but I am now getting blood tests back that are confirming the results of the machine.
This machine will print out every bacteria, protazoa, fungus etc...
I think it would be worth a try for your husband to take this test. You may not be able to get a blood test for every organism that it lists but you may find something on there that you never would have thought of and you can then get a blood test for it.
My doctor has found the mystery illness to some of his patients by using this machine and confirming with a blood test.
Posted by seibertneurolyme (Member # 6416) on :
Haley,
Back in 1999 when hubby had mercury toxicity from his dental fillings (prior to tickborne illnesses) he was tested with electrodermal scanning using a Phazyx (spelling?) machine. At that time the machine was helpful. He was retested by the same doc in 2001 when he first got sick with lyme etc -- test did not help at all.
During the next 2 or 3 years while searching for a diagnosis he was tested by at least 3 different docs using different electrodermal machines -- no help at all.
From what I have read I think the asyra may possibly be an improvement on some of the other machines -- hubby has not been tested on this specific machine.
I have thought about trying to locate someone who could test him on the asyra. It would involve traveling probably out of state but it might be worth it.
Bea Seibert
Posted by D Bergy (Member # 9984) on :
I know of a place that uses a Galvanic response machine that is supposedly pretty accurate. I was going to pay them a visit one of these days to test it out.
It is in Michigan, and I am not sure how close that is to you. PM me if you would want more info.
I have not tested this out, so I am naturally skeptical of this sort of thing. But the concept seems plausible.
bea I have some ,maybe usefull info about the things found at DR K.your mailbox is full. gale
Posted by CD57 (Member # 11749) on :
Haley, what did you mean by this statement:
"My doctor has found the mystery illness to some of his patients by using this machine and confirming with a blood test."
What did your doc find the mystery illness to be?
Posted by kelmo (Member # 8797) on :
Just a quick note. Last time we were in Dr. Fs office, he pulled my daughter and I into his office to show us his most recent development. His lab was able to replicate the organism with the biofilm within 12 hours.
This is great news, as they can now replicate enough to start finding the right combinations of drugs to first compromise the biofilm, then second, to kill the organism, or allow the body to do it.
Also...based on Fry's patients, ALS patients have a different combination of infections than other chronic illnesses. Meaning, if you are given a firm diagnosis of a disease that has unknown cause, finding the combination of organisms gives a better chance of treatment. This organism is always present, but there are other organisms, as well.
Lyme isn't that big of a factor. He can treat that pretty easily.
The organism is called FL1953 just as a working name. They were trying to come up with a name for it, kept changing it, but forgetting what it was currently being called. Until it is fully mapped, they won't name it.
I'm sure there was more to it than what we were able to discuss in two minutes. We had to get back to the exam.
So, just an FYI. He's still working, but a little less visible. They are doing the happy dance in private.
I can't answer any questions beyond this.
Kelmo
Posted by seekhelp (Member # 15067) on :
Man, I wish this Dr. F would start releasing data more. I'd actually pay for their test if they were wore willing to disclose what they know to non-patients. Posted by Haley (Member # 22008) on :
CD57 - I did not explain that well.
What I meant was that he has some patients that are very ill but doctors have not been able to really figure out what they have. That's what I meant by mystery illness.
He can do a test on this machine. Lets say whooping cough (pertussis?) comes up as the most prevalent bacteria but the person has never had a cough, however they are very ill. He can do a blood test to confirm if this is what is causing their illness.
If the blood test is highly positive that patient can be treated for Pertussis.
Posted by hadlyme (Member # 6364) on :
Thanks Kelmo for that update. I see him again in a few days. I love what he is finding!
My dad and aunt died of ALS.... so with it in my family, I'm sticking close to him!! I never had a tick bite which is soo interesting! But positive to lyme and babs. but?
It's not that he and the lab are keeping things 'secret'... they are just working hard as microbiologists should and when info is concrete, they will release it.
I figure I'm one of the 'subjects' in their searching and I'm fine with that.
Posted by kelmo (Member # 8797) on :
hadlyme...is it now gone?
My daughter is a subject. She had to sign something five years ago when she became his patient.
We never had tick bites either.
The reason more information is not being released is due to the political nature of the disease.
I asked him if he found the organisms in mosquitoes, and he said "yes". They had traps around the city, but couldn't tell me where for fear of getting in trouble. I had my guesses.
There was an article in the San Jose Mercury on June 29 that had a story about a man misdiagnosed with ALS. He wasn't breathing on his own. Someone tested him for Lyme, and he came up positive.
After a year of intense treatment, he is breathing on his own and walking with a walker.
Dr. F has a patient very close to that scenario. Has he told you about it?
Posted by hadlyme (Member # 6364) on :
Yes he did tell me about the ALS patient. And there are over 30 patients coming down to him from a community from Montana (where I'm from). These people have been diag. with ALS, MS, Parkinsons, CFS, Lupus. He's seeing improvement in all these people now!
He said something about teaming with another lab from MA, that will be doing more intense studies on ALS and this. I told him to count me in on that testing too.
I've been seeing him every 4 weeks lately, we're trying something a bit different, and seems like I am improving too. Nothing rocket science or anything, but different combo's and not all antibiotics.
Do you ever come to our Lyme support meetings? I can pm you with location and time. East valley, not far from his office.
Posted by kelmo (Member # 8797) on :
Yes, we used to go to those. As my daughter improved, we couldn't fit in the drive and the time.
Oh, his autistic patients are improving, as well.
Yeah, my daughter has been going every six weeks lately. Had a relapse. Went off abx for six months, and had a very, very busy semester. Otherwise, I think she only saw Dr F 3 or 4 times last year.
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