posted
thank you lymebytes. I think you are right. However my hope is that what we do here can clarify the matter. There might be different pathogenes/mycoplasmas spp. at play- but if we are very lucky we may get the pattern and even get reports of successful cultivations of the culprit and thus maybe effective antibiotics.
To tosha your may be right. But I see no point in bringing in Dr B in this context now.Lets see how far we can take the matter from our own experince/facts.
Yours Gale
Posts: 268 | From europe | Registered: May 2008
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
I got the same Fry Labs results. I paid for Babesia tests, smear and titre; both were negative for Babesia, but i got the same smear photos as you, also called suggestive of Hemobartonella or Mycoplasma.
It's hard for me to say what my symptoms are or which treatments help, because I'm almost well, after 4 years of Lyme treatment, and have only slight symptoms, such as falling asleep during the day, insomnia, some wooziness, some hand arthritis, an occasional eye pain, eyebags.
The main symptom now is ANEMIA, possibly caused by mycoplasma!
Finette did some research and said that cats with Hemobartonella felis can get terribly anemic. She wanted to know how i came to have a cat disease in my blood when i have no pets.
Finette posted this on the [email protected] forum. Another girl on the forum had the same results on her Fry test.
Thanks for good work on this mystery!!
Posts: 1226 | From USA | Registered: May 2007
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Thank you very much for your posting. Have you any idea which antibiotics helped you the most? When did you have the H/M smear finding?
yours Gale
Posts: 268 | From europe | Registered: May 2008
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
For my Fry Labs test the blood was drawn May 6, 2008.
I've had falling Hemoglobin for 2 months. The doctor ordered the first steps of an anemia workup. Haven't got the results yet for TIBC, Ferritin, etc. Probably macrocytic, one of those RBC size measures was large.
I've been losing weight. Lost 7 lb in a month or two,; now i just lost 3 lbs in 6 days while eating a lot and not getting as much exercise as usual. It's good i know that Mycoplasms can cause weight loss, otherwise i wouldn't know what to suspect but cancer.
I've been mostly on Biaxin+Plaquenil+Omnicef for the last year, plus lots of herbals: Lomatium, Elecampane, Andrographis, Polygonum, Teasel, Pau d'Arco, Neem, Sarsaparilla, high-dose garlic pills, proteolytic enzymes, high-dose Nattokinase, this week started GSE, etc. etc.
What has been helping my Lyme has been everything together, i imagine, but how can i tell?
I suspected Babesia for the last year, since i thought a coinfection might be slowing my lyme recovery,(4 years of abx) and i had some Babesia symptoms: sometimes days of dark reddish-orange urine or dark tea-colored--- but a urinalysis found no blood; sometimes faint-night-sweats-on-back-of-neck; slight Anemia or borderline low; falling asleep at noon. My monocytes and globulins were always low, except when i took Colostrum pills and bovine Immunoglobulin pills, which twice raised my monocytes to normal, but caused worse hand arthritis.
Suspecting Babesia, i started taking Artemisia annua and Elecampane, and this week started Malarone. I thought the Artemisia annua a couple of months ago put a stop to some babesia symptoms. I was treated for babesia 3 years ago with 2 months of Mepron/Zithromax, although i never tested positive and had only faint symptoms.
Now this Anemia and losing weight is scaring me. I stopped taking Plaquenil because a doctor said Plaquenil can do things to your blood. Have to research all my supplements, to see if they can cause blood effects.
If Mycoplasms are CWD, cell wall deficient, would the proteolytic enzymes like Serrapeptase dissolve them? Once i read, i think, that proteolytic enzymes dissolve CWD forms. For sure, the proteolytic enzymes on empty stomach do give me 8 to 12 hours of relief from most symptoms.
Good luck! ---pamoisondelune
Posts: 1226 | From USA | Registered: May 2007
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thank you again for yor comprehensive answer.Very soon I think, there is enough info here to try to sum up. I�ll get aroud to that soon. However, I think you give very interesting information that needs to be addressed now. 1. the anemia thing.I think you are right in persuing the Mycoplasma/haemobartonella thing.That is ths classical feature in infected cats and dogs. Would it really be a clinical manifestation in humans too?(did Frylabs say a few ,moderate or many Hemobartonella attached to the Erothr...?)Of course there might be other explanations. 2.You say that your immunglobuline level has been low.So has mine. I wonder if thats a common feature with people fighting infections like this.Our immunsystem is simply not good enough- Or the immune-system is somehow paralyzed by the infections? I had a comprehensive immundefect-examination- and in consequense a haematological examination without any findings.If you should be advised to make something like that please mail me. I might have useful information.(They found out that my blymphicytes semmed to be cd20 weak. Nobody has ever heard of that. I wonder?- an effect of hemobart?) 4.Have you had a PCR (blood) for mycoplasma?
I hope that you find more to go on soon.
Yours Gale
Posts: 268 | From europe | Registered: May 2008
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Till now. A.Number of Hemobart/Mycoplasma findings in smear F.lab7 or 8. Gale Gabrielle (hesitates) hshbmom Feelfit CaseyB Craig Marcy Pamoisondelune (what sound from the moon?)
B.Number of Mycoplasma positive by PCR: 3 and one even pcr-positive from biopsy.
C.Succesful antibiotics/treatment: ?
D.Clinical manifeations- major problems: Not enough material?
E.Other clinical features: not enough material. anemia?
Gale
Posts: 268 | From europe | Registered: May 2008
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posted
Have any of you that have the haemobartonella positve finding ever been diagnosed with Lupus or Lupus like symptoms???
Posts: 465 | From New York, NY | Registered: Aug 2005
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Bobcat fever is supposedly species specific -- humans do not get this tick-borne infection. A very interesting map showing the distribution of this disease in the U.S.
Bea Seibert
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Well, if Mycoplasmas are commonly treated with Biaxin/Doxy as a combo, I've been doing that for about 6.5 months now. My symptoms are mild neuro symptoms, but yet they haven't gone away.
I wasn't aware that Hemobartonella was not actually Bartonella. If Hemobartonella is actually a type of Mycoplasma, why do the results say "suggestive of Hemobartonella or Mycoplasma"? I spoke to a lab technician, and he stated that if the blood smears show something there, that it definitely means you have one or the other.
I'm beginning to wonder about these labs, that claim to be so "cutting edge". Alas, I can't take a chance that I have it, so I treat.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Good find Bea. The slides from fry look a lot more like the Cytauxzoon felis infection than the Mycoplasma hemofelis infection to my untrained eye.
I wonder if fry labs has compared what they find to the Cytauxzoon infection? Probably not. Might be a good idea for someone who's had this finding at fry labs to talk to them about it.
I have not had slides with them but I'll call them if no one else will.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
In "Swedish Lyme sufferer`s" posting above one can see in the link that a laboratory makes pcr for different mycoplasma sp. Anybody who knows this lab? Anybody who was tested there?
The link starts: "What is the cause of the chronicity of Lyme Disease ? Dr Eli Mordechai
I am from the R&D section at Microbiology Diagnostic Laboratories. Our laboratories ask the question"
Gale
Posts: 268 | From europe | Registered: May 2008
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posted
Not sure if you can see very well, but the dark stained little dots are apparently the hemobartonella/mycoplasma.
I did not have any other tests done there, just the smear.
Elsewhere and at other times, I have tested negative for antibodies to several bartonella species, positive for Mycoplasma fermentans, negative for Mycoplasma fermentans, and a higher than normal titer for Cpn.
Very puzzling to know just what is going on here. Is the M. fermentans gone, but this thing - hemobartonella - still hanging around? Haven't the foggiest notion. Or are we back to "bartonella-like object" about which little is known?
To answer Gale's question, my chief problem now is muscle wasting. Still have tinnitus, a touch of bells palsy, other stuff.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Lou thanks very much Lou. Mine looks exactly the same although I have got more bugs. I was negative in Mycoplasma Pneumonia antibodies
Muscle pain and wasting are part of my problems too. When I take Abx it gets worse.Herxheimer or side effects? Like you I have wondered.One kind of Mycoplasma in the blood and another kind elsewhere? Lung problems would be logical for most infected?
I can see that you can have your dog/ cat tested for haemobartonella Felis etc by PCR. Thus the DNA sequences? are defined. Would be logical for Frylab to do that.
Gale
[ 21. June 2008, 07:35 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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posted
hello everybody with a Hemobartonella/Mycoplasma-finding. Although there might be different mycoplasmas or whatever at play I think we might get wiser if we pool our info. If you think so too, you might want to go through and answer the Questionaire below.You dont need to write anything about the items that are irrelevant for you. I think we could all benefir from this "aggregation of info"??
Gale Tests Mycoplasma spp - Pcr Specific mycoplasmas - pcr Positive antibody test mycoplamas 1 Other patogenes bacteria/virus 2 Other pathogenes 3.Other pathogenes Blood work Elevated crp Elevated leucocytes Neutrophilocytes TNF-alfa Anemia Problems With immune-system IgG-level other Symptoms/Problems Weight loss Night sweat Muscle pain-wasting Neurological specify Abdominal pain/problems specify Airway problems. Cough, pneum. -specify Subfebrile temp Skin manifestations/ Problems Joints- specify Pain. Neck or .... Specify Jaw-Teeth Other- specify Therapy Abx you have tried and other.-Helpful or not? Fluoquinolones ( cipro,Levo etc.) duration,side effects Tetracyclines (doxy, mino,tetracycline) Other abx Other.- herbs etc
[ 21. June 2008, 07:58 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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posted
Found this- Again from Vetenarians.A Vet. would in many cases be a better choice:
Mycoplasma Group, Department of Statutory and Exotic Bacteria, Veterinary Laboratories Agency (Weybridge), New Haw, Addlestone, Surrey KT15 3NB, UK
Accepted 7 August 2004. Available online 2 October 2004.
Abstract Bacteria of the genus Mycoplasma are the smallest organisms known to be capable of self-replication. They only occur in association with animal host cells on which they are dependant for many pre-formed nutrients since they lack many of the metabolic pathways associated with energy production and the synthesis of cell components found in other species of bacteria. It is generally thought that most species of Mycoplasma are very host specific but there are many reports of mycoplasmas in hosts that are not perceived as their normal habitat. Sometimes these ``crossings'' may have a pathological impact particularly where there may be predisposing conditions such as immunodeficiency. These are often reported in humans but may also occur in animals whose immune or physiological status is not known. This review brings together some of these reported incidents and speculates on their potential impact for laboratory diagnosis
Posts: 268 | From europe | Registered: May 2008
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posted
Got the typical Bartonella adherent to erythrocytes and being suggestive of Bart. spp. Titer was 1:64. Duck won't treat it.
She tested positive for mycoplasma pn. three times almost three years earlier. She also had the tradmark red striae marks on her abdomen and kneecaps.
Abx. we have tried; IV= Rocephin, Flagyl, Doxy (not very long though), Zith. (her her the hardest), Gentamycin, and oral Levaquin. The Levaquin never really seemed to cause anything that resembles a herx.
posted
An additional thought...she has been using zith. for quite awhile and the 1/2-life for zith. is ~65 hours...how could the zith. not be effective if this was truly a mycoplasma spp.????
I've seen posts before where some abx. do not work against certain forms of myco., but then others do. We had just started IV-Doxy. when our duck cut off all abx. This is why I'd like to go with mino. + rifampin.
Is anyone actively studying this? If Fry is finding these conclusions, I wonder if they plan to publish this data?
posted
The CDC will make a hash of this for sure. Their acronym should really be CDD.....Center for Disease Denial. Report this to them if you want trouble and an immediate stop to any progress in this area.
Posts: 8430 | From Not available | Registered: Oct 2000
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Galehane asked why I did not do follow up post after speaking to my LLMD. The answer is because I STILL don't get it (sigh). Sooooo technical.
My history in short: My FIRST Fry lab was done in the LLMD's office...meaning he pricked my finger and put it btwn two slides to send to Fry.
That came back as pathogen:Bartonella SPP. Comments: Rare coccobacilli adherent to erythrocytes with an arrow. This is consistent with Bartonella spp. Suggest follow up with additional lab work. That was in Sept 2007. I then went on 5 mos of Rifampin and zith and herxed like a mother.
The second blood test, done at Labcorp (4 mos later) in Jan 2008 but SENT to Fry came up as: No organisms observed on stained smears.
So LLMD felt my Bart was in remission. This was seconded by ANOTHER LLMD who checked my clinical symptoms and muscle testing.
I found out no real further information from him (my second and only LLMD now) regarding this controversy with Fry. He said that BLO is definitely more accurate a term for what Fry is finding as it IS some form of a parasite but they don't quite know what, yet.
He started talking about mycoplasma but it went WAY WAY over my head and, since I'm in remission I can't compute anymore. I started to glaze over and had so many other questions regarding Mesosilver, etc. I'm just so over the confusion. The anxiety it creates is TOO much for me, truly.
My suggestion would be to do the 5 minute free consult with Dr. JS (not my LLMD) and ask HIM his opinion OR call Fry directly and try and speak with Jeremy who is very nice and fairly approachable.
Let me know if you need the phone #. I didn't want to post anything confusing or incorrect so that's why I didn't follow up because, honestly, I still don't think they know what's going on and I'm desperately trying to get over the anxiety attached to all of this controversy!!
As you all know,I have no fears of sharing...just a fear of sharing incorrect info!!! Best,
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
My dogs' Fry results:
Female: Few coccobacilli adherent to erythrocytes indicated with an arrow. This is suggestive of Bartonella spp.
Male: Ditto Plus an additional color picture saying: Moderate number of unidentified organisms indicated with arrows. Refer to vetinary pathologist for identification.
I'm sending their results to link from Merrygirl in this thread:
One thing just came into my mind; if it is a PARASITE thing this myco/bart thing, then clindamycin would be GREAT.
Clindamycin kills toxoplasmosis and other parasites, has also some effect on babesia (with quinin) and kills 2 types of mycoplasma (se erlier posting from me) AND is great for neurolyme according to Dr. J in NC (read it on his homepage).
I see very few people here using this drug. It sure can be tuff and caus C. difficile, but it might be worth a try?
Posts: 347 | From sweden | Registered: Feb 2008
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posted
Also.....I don�t see Dr. S using it in his new book either. He seems to be trying with lots of meds, why not Clindamycin?
I took it and had THE worst herx EVER and afterwards felt THE BEST since I got ill. I will do it again. (I did it IV, less probl with GI issues)
Posts: 347 | From sweden | Registered: Feb 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I think you're onto something, Swedish! There's a risk with every drug and usually only a small percentage are effected.
I never lost my gall bladder with IV Rocephin...just the opposite: It pushed my Lyme into longtime remission. I pray permanently (going on 6-years now)
Don't know why Dr. S doesn't mention it...nor any other LLMD I've seen. He's pretty tight with Fry labs so if you haven't used your 5 free-minute consult with him yet, this may be the time to do it!
It seems like you, Alv and Tosho could figure out ALL of this with your research, intelligence and tenacity. And now with this post by Galehane, the 4 of you are really onto something.
Honestly, I just don't think they know exactly what it is. My LLMD is very humble (yet extremely intelligent but even he says it's called BLO for a reason).
My Lord, the Fry report on one of my mini-dachshunds actually said unidentifiable organisms...see vet. Uh, okay. Thanks.
posted
I believe the test is ok- they are pros in that lab. So the only thing I know as far as I am concerned is that it is probably a bacteria, not bartonella and most likely not mycoplasma. We can hope they will move forward in Frylabs. I wouldnt care what it is as long as I had found an effective ABX, which I havent.If Clindamycin really worked what could that tell us? we cant even be sure to have the same bug
gale
Posts: 268 | From europe | Registered: May 2008
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posted
Negative results on a PCR test are certainly not conclusive. Dr B says in his guidelines that even at best they are only 30% accurate, and this is if you are off of all abx and alternative therapies that can and will interfere with results.
You guys are going nowhere with all this speculation and saying that it might even be Cytauxzoon. You can't match up bacteria by comparing photos.
My guess is that the lab is under pressure from the CDC to back off of the Bart and Babs Dx.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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posted
thanks for your info about the reliability of a pcr.I am aware of that.
You may find that it is rediculous to compare pictures etc.The way I see it, is that we are trying to pool info in order to see if can point somewhere.
If I have a negative pcr and all the others with the smear too- that would be helpful an vice versa.
I have a strong feeling that F.lab is not that certain about its conclusions.If it is not a mycoplasma- but in the vincinity and not bartonella and not babesia (because still a bacteria) it might be a mycoplasma-sort of thing-like piroplasmosis.Then Swedish Lymesufferer`s idea about Clindamycin would make very much sense.
Gale
[ 23. June 2008, 05:12 PM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Micul...we had an appt with the doc today. There's no pressure from the CDC, FDA or anyone else, it's just more accuracy. He just acquired a PCR, and it's helping to narrow the DNA of what has been thought to be just bartonella.
FYI, Jeremy is no longer there...he was drawn away to a job with a three day work week.
Dr. F is discovering something important about those dots attached to the red blood cells, and will be speaking to a group of docs in July in Kansas City.
I think a pretty good link about what this is all about is here:
I am not going to speak for him, because he explained it to me today, and my brain shut down. I managed to jot down a couple of words, then I couldn't handle any more.
Seems there is a human form of this organism, and things being reclassified, and a new genus of bacteria...etc.
Whoever said something about Clindamyacin (I can't reference it right now), may be on to something.
My daughter's face has broken out in acne something AWFUL. LLMD prescribed BenzoClin (?) It has Clindamyacin in it. My daughter is having a herx in combo with her minocycline. So, that makes me think the clindamyacin is hitting this mycoplasma.
Because this organism attaches to the RBC, he is speculating that patients need to be on an antimalarial, as well. So, we are going back on Mepron tomorrow. We have a couple of bottles left over from the last run.
This may cause more questions, but that's the closest article I found to what he said this afternoon.
This doesn't mean you don't have Lyme, babesia, or other infections. All organisms need to be treated.
It might just mean that this is what is causing the illness to be chronic. There may be a more efficient way of attacking all the organisms.
Discovering this is halfway there. The next step is targeting it with the perfect antibiotic.
I don't think I can answer any questions, this is all I can think of to explain the change in classification.
posted
Thank you so much- what would we do without this site??- if something comes to mind tomorrow- please post it. Thank you Gale
[ 24. June 2008, 08:15 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
gale i did get your PM, i will try and scane my pic sometime this week.
this is all very interesting to me.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Benzaclin and Clindagel BOTH hit the kind of acne I get when I have die-off toxins. Nothing else kills it...none of the regular acne killers like tazorac or differin.
Interestingly enough, my dermatologist knew that it was "THAT kind of acne that needed abx in the topical" but knows ver little to nothing about TBD's.
hmmmm....
clindamycin...
We'll figure this out together! Keep all info coming, folks. Every piece of this puzzle is important!
posted
Hello everyone. I also had the same FRY labs finding: "suggestive of Hemobartonella or Mycoplasma spp."
What a crock. No one seems to know what this is. My Lyme Literate doctor doesn't even know how to treat Mycoplasma spp. I also had a Mycoplasma spp. PCR done 7 years ago, and it was Negative, from Immunosciences in California. So, I don't think the FRY stained smear is so great.
I'm a big cat person all my life, so maybe it's just something that we get from animals. I don't know. Anyway, just registering my similar reply from FRY. Very disappointing and vague.
Posts: 8 | From United States | Registered: Jun 2008
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
My interpretation of the blood smear is that it is a useful tool, but not definitive. I dont think that "crock" or other criticisms that I have read on other websites, is a fair appraisal of what a blood smear is, when you are dealing with this small of an organism.
It is sort of like a screening device. You have certain stains that certain bacteria, etc. will react to. There are shapes of bacteria, although some may blend or even morph.
If something shows up, great! At least you know there is something there. It is only a first step.
It allows the doctor to do further investigation, and narrows down the playing field of possibilities.
That is why some will want to do further testing to specifically identify the organism. However, the success or accuracy depends on sampling, choosing the "correct" test (not all species will have a test), and success then is subject to reliability of the test. Some drs. may just treat empirically, too, and adjust protocol depending on symptoms.
I think the confusion and frustration was from the changing of the names. Remember, they always said "suggestive". It cannot be definitive ever. Even a lyme diagnosis is "presumptive" because of weaknesses of all Western Blots, and the range of symptoms.
Everyone is learning, even the doctors and laboratories and researchers. (well, except for idsa, and they just keep repeating, like a bad dinner).
The field of mycoplasma is expanding and very new (except for GN who has been talking about this for years), so there will always be re-definitions, discoveries, and re-classification. They changed the name of ixodes dammini, they changed the classification of HME and HGE.
Things will always change as newer methods and new information become available in the future.
just my $0.02
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
I have read this thread twice, and I honestly don't know what to think...???
1) PCR-negative for mycoplasma fermentans 2) Serology-positive for mycoplasma pneumoniae, 2x 3) IgG CSF-positive for mycoplasma pneumoniae; 1:600 4) Bowen's QRIBb tested highest at 1:128 5) Two Western Blots show nothing really significant, a few bands positive and/or IND. 6) IgG HHV-6 positive; 1:2560 7) Fry Lab postive for Bartonella spp.- this was even positive AFTER several months of zith. 8) Had the trademark characteristic red striae marks of Bartonella on abdomen and kneecaps 9) Most recently have been told urine testing and old muscle biopsy shows trichothecenes mycotoxins 10)All Babesia testing was negative
Doctors tell us extrapulmonary infections with Mpn. don't manifest in her way. Only meningitis and encephalitis are conditions associated with Mpn. So far, I have found over 20 conditions linked to Mpn.
Hubby had 2 Fry bloodslides done in March and August of 2007. First slide said Bartonella and Babesia. Titer also was positive for Bart. Treated for Babs with low doses Clindamycin and Quinine. Then low doses of Cloroquine and Primaquin.
2nd test showed Bart only -- no improvement (both Bart slides rated as moderate infection back when they were using the numbering system). Did not retest titers.
Have been trying to treat for Bart since September of 2007. 2nd half of the year was a disaster -- hubby in the hospital for 78 days. Uncontrollable muscle rigors plus tremors, myoclonus and "seizure-like" episodes. And G.I. symptoms.
In February of 2008 switched to a new LLMD. Now treating all 3 infections -- Lyme, Babesia and Bartonella by pulsing low doses of 5 different antibiotics -- gradual but steady improvement.
This LLMD felt the Babs was still present at a subclinical level -- herxes would seem to indicate he is correct -- had some mild air hunger (a new symptom) and return of night sweats during treatment. Also elevated Bilirubin and elevated RDW again returned to normal as they do every time he treats Babs.
Hubby will retest in either August or September this year so it will be interesting to see what Fry finds this time.
Hubby had treated for Bart with 3 months of Levaquin 3 years ago so without the bloodslide we would never have known to retreat for Bart.
I heard Dr B speak in New York during hubby's last hospitalization and he stated that after he closed his practice he reviewed the case files of all 11,000 patients (I think that is the right number) and the ones who did not get well either had undiagnosed or untreated Bart (BLO) or Mycoplasma. He said they are treated with the same drugs.
The interesting thing is that Dr B was the one who clinically diagnosed hubby with Bart (based on G.I. symptoms -- gastritis of unknown etiology 3 times in 2 years but now up to 5 times in 7 years) and originally prescribed the Levaquin which didn't do much of anything the first time except return elevated blood ammonia levels to normal -- hepatic encephalopathy for 5 months after IV Rocephin was no fun.
This spring the Levaquin stopped the muscle rigors with the first 1/2 pill. Has pretty much continued working except for some mild herxes. Stayed on Levaquin for 4 months but now on other meds.
I would definitely recommend the Fry Lab to anyone looking for coinfections. Even if they can't 100% identify the pathogen you at least know there is a pathogen.
If you have ever had to argue with ducks and are seronegative for Lyme like hubby you will appreciate every little piece of the puzzle that helps narrow down the treatment possibilities.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Have wondered if there is some possibility of Mycoplasma Pneumonia cross-reacting and showing positive in the presence of Bart.
The reason I say this is that twice last summer when hubby started treating for Bart he had positive tests for cold agglutins (hospital lab). This is normally an indication of Mycoplasma p. His Mycoplasma p. tests from Quest or Lab Corp were only mildly elevated though (can't remember the numbers exactly right now) and he didn't have any new different symptoms during that time frame.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
hi lots of great but confusing info in these posts. I was just diagnosed with Lyme yesterday at my first appt with a second LLMD. The first one ran the tests back in January of this year, but he did not have conventional treatment methods and i wasn't comfortable.
He also suggested retesting in 6 weeks with another western blot. Anyway, i didn't do anything until yesterday when i went to a different LLMD b/c of the article I saw in reader's digest. He made the diagnosis and wants more testing.
I am posting this reply b/c i am in Arizona and I just found out that Dr F accepts my insurance. (the LLMD i saw yesterday doesn't and is pricy). So, I made my initial appt for July 10th.
I am expecting that he will reveiw the test results that came back in jan and order other tests that he feels I need. These will prob include tests for Bartonella, babesia, and whatever else. I am confused as to what "PCR" means b/c I am new to this site, the testing and everything else. I have been very ill for 13 years now w/no diagnosis, so I have been on and off abx the whole time. nothing long term tho.
What can I ask Dr F about the Haemobartonella/mycoplasma, bartonella or babesia? I would like to gather as much info as i can to be able to post after my appt. I do have neuro problems though and have alot of brain fog but i will try.
Also, the LLMD i saw yesterday did put me on clindamycin,pro biotics and vitamins. He said he would like me in the hospital with an IV but he wasn't able to do that b/c of hosp standards, ins reasons and whatever.
I will let you all know if i see any improvement on the clindamycin. He told me it will be a long road and more abx will be added.
some of my symptoms: joint stiffness and pain neuropathy pain swelling of feet.. they turn purple too adrenal insufficiency brain fog, confusion, memory loss night sweats blurred vision
these are just a few of my problems.. i will post answers to the questionairre you posted gale after my appt w/dr f. My appt is on 7-10-08, so plese post questoins you'd like answers to, and ones you think i should be asking him anyways. I'll do my best to gather the info.
I've definitely thought the same thing. Although, sometimes I talk myself out of it. Testing positive for myco. three times by two different methods seems fairly unlikely. But, could be wrong.
If the Fry Labs test is really finding mycoplasma, then I'm wondering why Alex didn't get more of a favorable response to the zith.- given that zith. hits most if not all mycoplasmas.
I am slowly beginning to change my perception of the entire problem and my intentions with starting this theme, although I think it has been very helpful in highlighting a very big problem and identifying a group with similar problems caused by the same bug.
I I see it like this now :
1.Identifying the bug described as haemobartonella/mycoplasma will not in itself be the big achievement.The bug is in the vincinity of Bartonella, Mycoplasma spp and Haemoplasma.I dont want to tire everybody with long arguments- so I am just very sure that I dont have Bartonella,Mycoplasma and I am checking for animal versions of haemoplasma now. So the chances are that (when the laboratory has completed their research) we shall be faced with a new kind of bug- a new human pathogene.
2.where does that leave us? If its "cousin" of a bug known to vets who treat it with tetracyclines or a cousin to Bartonella treated by human doctors with...that still does not conceal the fact that treatment options will have to be found first.It strikes me that many here have tried many "traditional" therapies with only modest success.One might suspect that this is really a nasty fellow (abx ineffective,treatment causing maybe immunological reactions of a bad kind.
so 3.No matter what the Laboratory may find out- maybe it would be sensible for everybody who have identified the same bug to focus on successes and failures (they are many) with therapy (only Clindamycin has been mentioned as successful by a few)-this is exactly what seems to be happening here,too.
Hope it can be treated. Gale P.S. Personally, I have had very strong reactions from several antibiotics.Why? when vets treat for haemobart. they also use prednisolone to stop the immunesystem from killing of all the red blood cells.We are not talkin Herxheimer here - but a different reaction. I would hate to take prednisone. However, I think it is essential that we keep in mind that we are the only ones who know what this is like and how medication affects us.NO LYME-DOCTOR OR WHATEVER HAS MORE THAN A WILL TO TRY TO HELP.TO DATE NOBODY HAS THE ANSWER REGARDING TREATMENT. Are the strong reactions to ABX necessary and a positive sign?
[ 26. June 2008, 01:40 PM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I think your posting is a great point of view, and very constructive.
This a.m. I was doing some searches on mollicutes. What a complex field. The following was from 2001, and I am sure it has changed in 7 years:
My LLMD who had me do the FRY test (and to which I got the same result as everybody else --["suggestive of Hemobartonella or Mycoplasma spp"]) just called FRY lab, and spoke to Dr. Fry. Here's the lowdown on what this means:
"Hemobartonella" could be one of three things: 1) Bartonella; 2) Mycoplasma spp; or 3) Hemoplasma.
He doesn't know which. Usually, the best treatment is some combination of Zithromax/Rifampicin (sp?), or, I believe my Doc told me, Biaxin. (Sorry, my notes are ambiguous at this point.)
Anyway, Dr. Fry WILL speak with your prescribing doc, as he did to mine.
I hope this helps.
Bernice
Posts: 8 | From United States | Registered: Jun 2008
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