posted
hi just a note on Zit. If effective at all the reason for using it in combination with another ABX is that the concentration in the blood-stream is almost nil. It goes into the cells etc.In case the bug is threre good.But the bugs clinging to- not IN- the red bloodcells seem to need some other ABX that reaches a higher cocentration in the blood-stream. My experience with Rif is that creates havoc and does not help (had it only 5 weeks ?) Face it when it comes to therapy- THEY DONT KNOW. THEY DONT KNOW.IT IS AS SIMPLE AS THAT.
Gale
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Clarissa
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posted
Okay, so I had the suggestive Bartonella spp from Fry.
Treated with 5 mos of alternating days of Zith & Rifampin. Now in remission for 3 months.
So maybe that means I had traditional Bart and NOT this new organism OR it means that, as Dr. Fry recommends, these 2 abx are a good combo for these 3 organisms.
The only discrepancy: Many have had NO relief with the same combo I had so I have to think that my organism didn't come a-la-carte with the mycoplasma and hemabartonella.
However, I do get die-off toxin acne that is only healed with topicals that contain clindamycin.
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Just to clarify if my post confused some people, here's my history:
Fry lab result: suggestive Bartonella spp
Treated 5 mos with alternating days of Zith & Rifampin.
Been in remission for 3 months.
Sorry it doesn't help build the case but my post above suggests some of my "guess-work" to why I'm in remission and others are not at this particular point.
I probably had plain old Bart (as opposed to having mycoplasma, etc) and I never had the horrible physical symptoms that you all have described: tremors, vibrations, heel pain.
My symptoms were primarily emotional/neuro; anxiety, depression and horrific pms.
I had occasional sore calves but that was it. Maybe a lot of the physical symptoms got hit with my agressive Lyme treatment years ago (now in remission for 6 years).
Sorry for any confusion...just trying to help figure out the puzzle.
Haemobartonella species are parasites of canines, felines and rodents. H. canis is an epierythrocytic rickettsial parasite . The organism occurs on RBCs with latent infections being common. The organism appears as chains across the surface of the infected cell or as small dots, rods or rings. Transmission is mainly by the brown dog tick with both transstadial and transovarial transmission occurring. Most natural infections in dogs do not develop into clinical problems but when they do occur they are usually associated with a developing anemia. Diagnosis is based on microscopic identification of peripheral blood smears. Treatments similar to that used for canine ehrlichiolsis involving tetracycline, oxytetracycline, etc. Antibiotic therapy probably does not eliminate the organism completely form infected dogs
Rickettsial parasite??? (or is it reclassified as bacteria-mycoplasma?)
Gale
[ 28. June 2008, 11:10 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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CLINICAL PHARMACOLOGY Pharmacokinetics: Following oral administration, azithromycin is rapidly absorbed and widely distributed throughout the body.
Rapid distribution of azithromycin into tissues and high concentration within cells result in significantly higher azithromycin concentrations in tissues than in plasma or serum.
So Gale, you are correct in that it goes directly to the tissues.
A question is then does a person continue to get re-infected after zith. is stopped because the bacteria is still in the blood, or did it just not penetrate enough to the deep tissues to make an impact?
posted
hi That was my idea with the posting.Zit is not good for sepsis.And that`s what we have, right?
zit (if effective) for the tissue. another ABX for the bloodstream.
But again we dont know where the bugger spends its time.In the blood- that`s obvious.The more I speculate about it, I think that the symptoms from tissue etc etc must be some kind of auto-immune-like reaction of its prescence there, too.
Wouldn`t it be wonderful if they could hurry up and describe the genes of the bug.Then,maybe, some of the really "heavy" pros could come up with an idea?
Gale
Posts: 268 | From europe | Registered: May 2008
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posted
Hi I think that we- if we combine peoples` experiences- can come much closer to what kind of treatment would be likely to work.
A.We can presume this about the pathogene a1.Cell wall- Probably none?
Bacteria or Parasite a2.If FRy is right most likely a bacteria.
Intracellular- a3.we know it is outside the cells,also inside?
In the bloodstream/in tissues a4.certainly in the bloodstream,presumably also in tissues??
Affection of CNS Sure thing
B.So we need an ABX or a combination of ABX�s that works on A bacteria without a cell-wall that is in the bloodstream probaly also in tissues and certainly in CNS.Extra-cellular but maybe also intracellular.
If these assumptions are correct a lot of ABX`s are ruled out 1.All the ABX which works by doing something to the cell-Wall. (all the B-lactames like cephalosporines(like Cetriaxone) penicillines, monobactames og carbapenemes) sorry about terminology-might be different in proper English!
2.Macrolides . If effective at all , some macrolides cant be used alone because they dont have enough CNS-penetration, goes into the tissues and not the blood-stream (ZIT).(are macrolides B-lactams??)
3.Tetracyclines.Seem to be the drug of choice-also what the vets use for Hemobartonella.CNS penetration(varies),intra and extracellular,penetrates to tissues,not dependent on a cell wall to be effective.
5.Penicillines. Out of the question for obvious reasons (see above).
6.Anti-malarias. If the bug is a bacteria and not a parasite and it does not have cyst-forms (like borrelia B-but we dont know)I see no reason why this should be effective?
7.clindamycin. little CNS penetration.Ok regarding not relying on destroying cell wall- but aprt from that?
Please help thinking!! Gale
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northstar
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posted
I just got a copy of my Fry Labs test report. I was tested with the blood smear, as well as for Bartonella antibodies. This is what my Fry Lab report says:
"Rare coccobacilli adherent to erythrocites indicated by an arrow . This is suggestive of Haemobartonella or Mycoplasma spp."
"Bartonella IgM and IgG antibodies for B. quintana and hensalae were both negative."
To me this is cut and dry. They did not find Bartonella spp. period and none were indicated in the antibody tests. They did find some sort of Mycoplasmal infection by direct photographic evidence, and they only suggest that it is M. haemobartonella. One can see the bugs attached to a few blood cells.
These were two different tests!!!!!!
Bartonella ssp. quintana and hensalae are different species of bacteria than Mycoplasma haemobartonella. To me there is no confusion and what matters most to me is how my LLMD wants to treat it, which is with various antibiotic strategies (currently Minocycline and Zithromax, if I can tolerate this latter, which I start tomorrow. Both, along with the rest of my evolving protocol, are excellent against Mycoplasma infections as well as Lyme).
I hope this clears some confusion. These are two separate entities only similarly named - and should be treated as two separate things and both tested for. Had I just been tested for "Bartonella spp." it would have missed this other coinfection!
Casey
Posts: 34 | From Kingston WA | Registered: Feb 2008
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posted
Hi Casey Thank you Yes it would have missed the bug in question-I dont know if it would help us very much to know what the bug is exactly, as they would have to find out treatment options anyway.For Bartonella it lasted years. Personally I doubt very much that it is mycoplasma and a human haemoplasma?? What we all need now are reports about succesful therapies.Hope to hear from people with good news. Gale
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posted
All I know for sure is that it is some sort of bacteria adhering to blood cells. What these are would involve testing. But I trust my doctor and Fry Labs to know what they are talking about with this - especially when taken in context with my symptoms etc. And how best to go about treating these. Further testing to isolate exactly what these are seems unwarranted. Also, unaffordable!
Casey
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pamoisondelune
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posted
Gale--- Why do you suspect the myco-or-whatever may damage bone?
I have osteoporosis but keep it under control with Strontium,Vit K2 Menaquinone-4, plus etc. It seems to be well-controlled, not a problem.
So, i'm interested in any bone effects. Thank you, ---pamois.
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posted
Hi Casey Burns-- Thanks for your post. You got the exact same FRY lab test report as myself (stained smear, anyway). However, my doc spoke to Dr. Fry, who said Zith/Rifampin are the recommended Abx at this point for this "thing," whatever it is.
Will you please let the group know how you do on your treatment with Zith/Min?
The confusion for most of us is that we "do" know that it's probably not Bartonella; but it is "something." In my own case, it's NOT Mycoplasma, because I tested negative for Mycoplasma.
So, that only leaves Hemobartonella, but that is primarily a feline/canine condition, and I am highly dubious that it could be causing my symptoms, since in animals, it only causes a mild anemia.
Thanks, Casey. Bernice
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It seems fair to say that its not a mycoplasma- the lab also now says that pcr for Mycoplasma is negative. I think you are right in that it is most likely not a know bartonella sp. Haemoplasma has been ruled out for me (but no reliable tests) That leaves a new bug either in the vincinity of a human haemobartonella[also classified as a mycoplasma??). But I disaggree with you in the way you think about haemobartonella. 1. most likely its not the exact same bug that animals get- maybe a new version. 2.It doesnt just cause mild anemia in animals- far more serious.
I also doubt Dr F s recommendations. Of couse we cant be sure to have the same bug but Rifamphecin was completely ineffective for me- and it doesnt pass in large amounts into the CNS.Zit is absent from the bloodstream and does not pass to the CNS at all. A Combo with a tetracycline and maybe Zit semes to me more likely to be effective ? Also we have contradictory reports of what Dr F recommends.In a post above somebody said that Mepron was added (makes no sense to me unles its a babesia-fellow or has cyste-forms like borrelia B)
But we still agree on the importance of having reports about treatment successes.Let them be many. Gale
[ 04. July 2008, 01:43 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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posted
Haemobartonella and Bartonella : Two Very Different Diseases!
Susan E. Shaw, BVSc (Hons), BSc, DACVIM, DECVIM, FACVSc, MRCVS Department of Clinical Veterinary Science, University of Bristol UK
Although the names are similar, these feline infections are associated with different epidemiology, pathogenesis and disease patterns.
HAEMOPLASMA INFECTION: Haemobartonella felis organisms have long been recognised as cat microparasites and are Gram-negative, haemotropic, bacteria lacking a cell wall.
They attach to the surface of host erythrocytes and are at present, unculturable.
DNA sequence analysis has shown that these bacteria are most closely related to the genus Mycoplasma and they have recently been reclassified accordingly.
Two species have now been identified, Mycoplasma haemofelis and M. haemominutum; the former is a larger parasite and is associated with clinical disease in cats while the latter smaller organism although common, appears to be non-pathogenic.
Transmission and prevalence: There is minimal information available on the epidemiology of feline haemoplasma infection.
The mode of transmission has not been determined although arthropod transmission is incriminated.
In addition, although infection is recognised world-wide in cats, the prevalence of infection/exposure is unknown due to the unavailability of serological testing.
Clinical signs: Previous reports that infection results in mild or inapparent disease may relate to M. haemominutum.
Severe haemolytic anaemia is associated with M. haemofelis infection and clinical signs include pallor, lethargy, anorexia weight loss and depression.
Intermittent fever may be present in the acute stage of the disease while icterus is occasionally seen later in its progression. Splenomegaly and lymphadenopathy may also occur.
Haematological signs compatible with a marked regenerative anaemia are commonly present.
Both Coombs positivity and cold agglutinating antibody have been reported in association with infection and although pathogenesis of the anaemia is thought to have an immune-mediated component, this has not been characterised.
Chronic persistent infection is reported and may be associated with minimal clinical signs.
Diagnosis: Diagnosis by microscopic identification of organisms in blood smears is now complicated by the recognition of the apparently apathogenic species M. haemominutum.
Although close morphologic examination may be able to distinguish the large from the smaller species of haemoplasma, the cyclic nature of the parasitaemia makes this method of detection insensitive.
The organism cannot be cultured at present and so development of a reliable serological test has been hampered.
Molecular diagnosis using polymerase chain reactivity (PCR) analysis is definitive and recommended.
Treatment: Doxycycline (5-10 mg/kg) or enrofloxacin (5-10mg/kg) administered orally for 3-4 weeks is recommended for cats with clinical anaemia and should be combined with blood transfusions and prednisolone in severely affected Coombs positive cases.
Although clinical response is often achieved, parasitological cure may be less certain and successfully treated cats may become asymptomatic carriers.
BARTONELLOSIS: Bartonellosis is caused by fastidious, Gram-negative, intraerythrocytic, arthropod-transmitted bacteria of the genus, Bartonella.
Several species are pathogenic in cats (Bartonella henselae, B. koehlerae, B. clarridgeiae). Asymptomatic infection with B. henselae or B. clarridgeiae is common in cats, which are therefore considered to be a major reservoir for human infection.
In humans, B. henselae and B. clarridgeiae have been shown to be the agents of the common, but usually self-limiting cat scratch disease (CSD).
However, less frequently, B. henselae has been associated with more profound syndromes such as:
vasculo-proliferative disorders bacillary angiomatosis peliosis hepatic endocarditis prolonged bacteraemia various ocular disorders (Parinaud oculoglandular syndrome, neuroretinitis and chorioretinitis).
Genotypic and phenotypic (serological) variations have been demonstrated among strains of B. henselae in domestic and wild cats and those from different geographical locations.
At present, the most significant division within the species delineates strains into one of two subtypes on the basis of their 16S-rDNA gene sequence.
Transmission: Cat fleas are considered the main vector of B. henselae in cats and recent work has shown transmission by skin inoculation of infected flea faeces.
However, the role of the cat flea in the transmission of B. henselae from cats to humans has not been proven.
Prevalence: Asymptomatic infection with Bartonella henselae (and B. clarridgeiae) is common in cats; 40-70% with seropositivity and 9-90% with bacteraemia.
Variability in reported figures may be a consequence of small survey sizes, differences in cat population characteristics (cattery, stray, feral and captive wild cats) and seasonal variation in prevalence as well as true differences in geographic prevalence.
The prevalence of infection appears to be higher in young to middle-aged cats but there is no breed or gender predisposition.
Although geographic environments with warm temperatures and high humidity are reportedly associated with the highest exposure;
the prevalence in cool temperate climates is also relatively high. In recent UK surveys for B. henselae, 11% of cats surveyed were culture positive and 41% of cats were seropositive.
The effect of climatic factors on the ecology of Bartonella infection may be blurred as in colder countries, animals are kept in heated domestic or confined environments, facilitating the maintenance of the flea life cycle.
Pathogenicity and clinical signs : Disease association with naturally occurring feline Bartonella infection is difficult to determine.
Although clinical disease (fever, lethargy, transient anaemia, lymphadenomegaly, neurological dysfunction or reproductive failure) has been reported following experimental infections with B. henselae and B. clarridgeiae,
naturally occurring disease associated with infection is more difficult to define because of its high prevalence in apparently asymptomatic cats.
In naturally infected cats, there is a statistical correlation with stomatitis and urinary tract disease.
Uveitis associated with intraocular Bartonella DNA and ocular IgG production has also been reported in cats.
Although Bartonella infection has been associated with other clinical syndromes such as endocarditis based on positive blood culture, the association is difficult to evaluate unless the presence of lesional organisms is confirmed.
Therapy: Treatment of bartonellosis and elimination of bacteraemia is problematic. Doxycycline, amoxicillin, amoxicillin/clavulanate used at higher than recommended dose rates have been successful in suppressing bacteraemia in experimental infections.
Rifampicin and enrofloxacin are also reportedly effective.
However, total elimination of infection may be impossible despite the use of combination therapy such as rifampicin and doxycycline, and prolonged duration (4-6 weeks) of therapy. In addition, the risk of re-exposure is high.
He did have the cold agglutins which seem to be associated with haemobartonella or mycoplasma, but he has the more severe neuro symptoms which seem to be associated with bartonella.
Seems to be responding to meds -- up to half therapeutic dose now on combo of 4 antibiotics (Zithromax, Bactrim, Minocycline and Rifampin) plus an antiparasite med (Alinia). Maybe in another 2 or 3 months he will be to full dose. Note that this follows 4 months of Levaquin at full dose.
Am wondering if he could have both infections?
Hoping Dr Fry's presentation at the Lyme conference on July 12 can help clear things up.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
thanks Mike It is a good article,but-unfortunately- I dont think it brings us closer to "home". At least not me personally.
I am pcr negative for mycoplasma Pcr negative for (animal) haemoplasma Antibody positive for Bartonella H and Q (but negative in the reference lab. My smear does not look like Bartonella.(outside the red blood-cells)
My consluion, naturally, is this. It is a yet unknown bug (human pathogene). Info about experience with treatment is the only possible chance of getting anywhere at the moment. Identifying the bug is a job for the scientists- wont bring us anything in terms of treatment unless they come up with facts like specifying whether the bug has a cell wall or not. Unfortunately, I cant place as much hope as you Bea in Dr Fry speaking at a conference soon.What will he learn in 10 days that he does not know now?? Unless,of couse,much more has been achieved in the lab than known to the public.That is not likely,is it?
Kelmo`s daughter gets Zit plus mino and now the "recommeded combo" is with rif.Seems as if Dr F is also trying different things in order to find the effective one.
yours Gale
[ 04. July 2008, 01:36 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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posted
Bernice, the term "mycoplasma" is not specific. What specific mycoplasma tests did you have? Mycoplasma are a class of super tiny bacteria, and can be intra or extra cellular. They can roam freely, or invade a host cell (e.g., red or white) and do lots of other nasty things.
Here's a good overview on myco-(latin from parasite) plasma:
PS: The Wiki reference to mycoplasmas and cancers was quite interesting! We'll see how long the powers-that-be let that one stay.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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One thing just came into my mind; if it is a PARASITE thing this myco/bart thing, then clindamycin would be GREAT.
I see very few people here using this drug.
My Fry tests said earlier this year: Few coccobacilli ... consistent with Bartonella spp...
In 2004/5 I had lots of Clindamycin because my LLMD was of the opinion it worked best for "problems in the head" caused by Lyme.
For some time I even took an overdose due to a mistake by my pharmacy but I couldn't say that Clindamycin helped me. For my it was the abx that helped me the least.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
quote:Kelmo`s daughter gets Zit plus mino and now the "recommeded combo" is with rif.Seems as if Dr F is also trying different things in order to find the effective
My daugther did zith 1/06 to 3/07 She added Rifampin 6/06 to 3/07
She dropped Rifampin and added Mepron 3/07-8/07
She dropped zith and Mepron and started Minocycline 8/07
She is still on minocycline and has now added Mepron back into the mix.
The Clindamyacin she is on is an acne cream. However, because it is absorbed through the skin, it is like she is on three meds at this time.
Hope this clarifies.
Posts: 2903 | From AZ | Registered: Feb 2006
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quote:Originally posted by galehane: thanks Mike It is a good article,but-unfortunately- I dont think it brings us closer to "home". At least not me personally.
I am pcr negative for mycoplasma Pcr negative for (animal) haemoplasma Antibody positive for Bartonella H and Q (but negative in the reference lab. My smear does not look like Bartonella.(outside the red blood-cells)
My consluion, naturally, is this. It is a yet unknown bug (human pathogene). Info about experience with treatment is the only possible chance of getting anywhere at the moment. Identifying the bug is a job for the scientists- wont bring us anything in terms of treatment unless they come up with facts like specifying whether the bug has a cell wall or not. Unfortunately, I cant place as much hope as you Bea in Dr Fry speaking at a conference soon.What will he learn in 10 days that he does not know now?? Unless,of couse,much more has been achieved in the lab than known to the public.That is not likely,is it?
Kelmo`s daughter gets Zit plus mino and now the "recommeded combo" is with rif.Seems as if Dr F is also trying different things in order to find the effective one.
yours Gale
Posts: 3 | From va | Registered: Mar 2008
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posted
I just had a smear from Fry. This is exactly what it said.
few coccobacilli adherent to erythrocytes indicated with arrows. this is suggestive of Hemobatonella or Mycoplasma spp.
This stain is not FDA approved and is for Research use only.
Being in the military and getting ready to lose almost 17 years of service has not been fun. Chip
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kelmo
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Member # 8797
posted
Gale, if it's not working for you, and you have no trust in this doctor, or the lab, it would be more helpful for you to go find one you like and recommend him/her to us.
I'm not sure what your motive is for this thread. Or, maybe I do, but I don't want to assume.
It's not productive. It's starting to go down the path of just whining.
Hope you find the magic bullet and the perfect test. When you do, please share.
Posts: 2903 | From AZ | Registered: Feb 2006
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Interesting information about your daughter`s present combo including Mepron.Mepron is used for parasites like Babesia.If your daughter is not suspected of having Babesia also, it would mean that the bug is seen as a parasite and not a bacteria.That would be important information.Can you clarify here?
If my posts above leaves you uncertain about my motives: I am trying to find out what this bug is and how to treat it.
yours Gale
Posts: 268 | From europe | Registered: May 2008
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kelmo
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Member # 8797
posted
I know I've written about this ad nauseum.
My daughter did have a positive blood smear for babesia and treated it last year.
However, as I've stated, the lab doc feels that this hemobartonella/mycoplasma organism is a parasite, and therefore would be beneficial to add a drug like Mepron or Plaquinil.
Since we had Mepron on hand, we are using it. It's an educated guess, as with ANYONE trying to treat these illnesses.
I'm sorry if I sounded harsh in my last post. I don't think you are going to find any more information here than what has been given.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
hi kelmo Thanks for "clarification". You are probably right about what is known to date about species and treatment.(I also think you were far beyond "harsh")
Most people here are dependent on the info- regarding choice of threatment-that we get "second hand" from the patients in contact with the doctor or info that we can get from the lab. On the one hand Bernice`s doctor is told that the recommended treatment is Zith and Rif (implying that it is a bacteria).
Information from you seems to suggest that it might be an unknown parasite:
"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"
Until somebody finds out, that leaves us in a situation where posting treatment successes and failures here is our one and only option. Please continue to do so.
P.S. According to information in some of the above posts Dr Fry is going to speak at at conference on these issues soon? Anybody with an idea about how to get updates from that speech?
Yours Gale
[ 07. July 2008, 05:01 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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posted
Hi Cold Feet-- Thanks for your reply. I had a negative PCR for Mycoplasma from Immunosciences in California, 7 years ago. We didn't know then, that I had Lyme. If you are here in Massachusetts, where I am, I would like to contact you off-line. Would this be acceptable to you? My email is [email protected].
I am just not sure how much this thing--whatever it is-- is adding to my symptoms, but it may be. I am sure that neurotoxins are a big part of my symptomology, and that is from the Lyme.
Could this Hemo/Myco "thing" whatever it is, just be hanging out? Do most of the people on this thread also have diagnosed Lyme?
Thanks to you, Cold Feet, and to all who reply to my questions.
Bernice
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kelmo
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posted
My daughter and I have never tested positive for Borrelia.
Posts: 2903 | From AZ | Registered: Feb 2006
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quote:Originally posted by Bernice: Could this Hemo/Myco "thing" whatever it is, just be hanging out? Do most of the people on this thread also have diagnosed Lyme?
I have a weak positive Lyme Western Blot, indicating a "fresh infection" since 5 years. It's never turning to an "old infection".
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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Take a look at the top 3, especially, which look exactly like what came back on my FRY lab results. Could be this is really Bartonella. Let me know what others think.
Thanks, Bernice
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1. the first two look exactly like mine and what is now described by the lab as haemobart/mycoplasma meaning in the vincinity of (a new) bartonella, haemaobart, haemoplasma , mycoplasma.
2.This is the precise reason for starting this discussion in the beginning.He seems to be "outdated".It is not the "normal" Bartonella H and Q (many people with smears like this do not have positive antibody titers/pcr.)Nobody knows if it might be an unknown bartonella or ...I think he needs an update. Normally bartonella is described as intracellular and rod-shaped, I believe.
3. The first 2 are just like the smears once posted here (now deleted).
yours Gale
P.S.I feel convinced tthat the new bug is a bacteria- not a parasite. P.P.S. did anyone try chloramphenicol?? (not sure about the spelling-an old drug)
[ 09. July 2008, 05:59 AM: Message edited by: galehane ]
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posted
Thanks, Galehane. I'm glad you clarified that for me-- I guess Dr. S. IS outdated. I thought I was onto something, but you're right-- this BLO DOES seem to be different. Thanks again, Galehane. Bernice
Posts: 8 | From United States | Registered: Jun 2008
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Would it be possible that the ones on therapy for "mysterious organism" gave an update about how it works?
I have started low dose (trying to increase) tetracycline.I believe it has an effect- but the dose is yet too low to tell for sure.Skin problems on the scalp have increased - wonder what kind of reaction that is?Got some joints problems in the hand- not improved (has anybody got that too?)
Gale
P.S. Got the preliminary results from a lab that tries to rule out haemoplasma. Negative.
[ 10. July 2008, 02:09 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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posted
1. the first two look exactly like mine and what is now described by the lab as haemobart/mycoplasma meaning in the vincinity of (a new) bartonella, haemaobart, haemoplasma , mycoplasma.
P.S.I feel convinced tthat the new bug is a bacteria- not a parasite. P.P.S. did anyone try chloramphenicol?? (not sure about the spelling-an old drug) [/QB][/QUOTE]
HI Gale and everyone,
As promised, here is a report after an appointment with Dr. F today. I was told on 6-24-08 by a diff LLMD (Dr S) that I definitely have Lyme and he started me on Clindamycin.
I showed my western blot and CD-57 test results to Dr F today and he said the testing indicated past Lyme infection (definitely) and a current bacterial infection.
My western blot shows IgG +41 and IGM IND31 and IND41. He said not positive for current Lyme, only indicative of past infection.
They drew alot of blood today to know for sure which bacteria(s) it is that is currently ravaging my body.
His speculations are babesiosis (sp?)and/or bartonella, and/or heamobartonella/mycoplasma.
I specifically asked him about the haemobart/myco and what that is and how it is different from bartonella.
Please bare with me as I have neuro symptoms and a foggy brain, but I will try to be as close as possible to what he said.
He explained it this way: He said that there is Lyme, as we know and I think he said plasmas.. then the co-infections babesia and bartonella. think of this as a diagram w/lyme at the top, along with mycoplasma (i think he said there were two groups?)
Underneath bartonella, draw a straight line down (diagram like) and this is where he places haemobartonella/mycoplasma, which he thinks is a new bacteria, not parasite ( you are right on about that Gale). While similar in looks to bartonella, it is actually a different bacteria.
He says it cannot be totally eradicated from the body yet as they do not have anything yet that effectively kills it ALL.
He said he treats his patients with combos of drugs such as : zith, melpron, plaquinil, doxy, and sometimes clindamycin. I'm sure he said others..thats what I can remember.
He did say specifically b/c its a bacteria in the blood, he treats with antibiotics and anti-malarial drugs.
He also said that he found out that when patients presented with lyme symptoms, not all of them test postive for lyme. This is why he set up his lab in the first place and started looking closer at the blood for bacteria and/or parasites.
He found that in a study with a control sample, only about 30 patients actually did have active Lyme, while all of the patients were positive for this haemobartonella/mycoplasma bacteria.
All these patients had had Lyme at some point, but not all of them were currently active with the Lyme infection, but they ALL tested positive for this new bacteria (and it is active).
He said this is a co-infection that can be spread by ticks, fleas and mosquitos and is just as detrimental and debilitating as the lyme itself.
Again, it cannot be totally eradicated as of yet.
In my case, he is suspicious of such bacterial co-infections and I will have my results at my appt on august 4th. At that time he will add more antibiotics and/or anti-malaria drugs.
My current protocol is: clindamycin 300mg 3x/day, multi vitamins one pill twice/day, pro-biotics, vitamins C, E, and D3 with fish oil, and seaweed kelp. I have been taking the clindamycin since 6/24 and am herxing on it, so he decided not to change it at the moment b/c it seems to be working.
I hope this helps shed some light on what is going on at Fry Labs.
Oh, and he did say that he was adding at least one more updated picture to his website soon. I told him that I would be posting here and he wanted everyone to know that if they wanted to take a look.
He also said this takes a long time to recover from, and it requires the long term antibiotic combos. He has had patients get to feeling better, and their symptoms become much less debilitating, but they still have the bacteria to some degree in their blood.
Again, hope this helps.
Hope you all are feeling some better. What a long journey.. I'm so glad I found this site!!
-------------------- God Bless, Leigh Posts: 44 | From phoenix az | Registered: Jun 2008
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posted
Hi I wanted to add to my previous post. In my neuro-fog brain, I may not be remembering everything correctly. I was sure Dr F told me that this Haemobart/mycoplasma bug is a bacteria, not a parasite.
He even showed me a pic of it. But, he did say that he tried diff antibiotic combos to find which one works best. He is still trying things to help his patients feel better.
He said he works continually to find out what this thing is and how to effectively treat it.. sometimes its by trial and error.
He is also trying to get the word out to the medical community and the CDC that we are dealing with a new unnamed bacteria here.. and it is devastating people's lives.
Hope this helps to further clarify. Thanks!
-------------------- God Bless, Leigh Posts: 44 | From phoenix az | Registered: Jun 2008
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I was thinking....(always a bad thing this late)...but
Is there anyone who has treated, and then have a Fry slide turn up clean? (when first slide showed the organisms).
If they have, what did they use?
Also, has anyone used an herbal protocol, such as Zhang, Cowden, etc., who then went on to have a clean Fry slide?
Thank you (should I post this as separate topic?)
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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On one hand I am grateful on the other it leaves me somewhat depressed, as it explains my history so much in detail. Also my suspicion that it can not be erradicated.
In fact ,I feel that the logical thing to do would be to do as much as we can to make the "heavy boys" interested in order to find treatment options.
Status so far is: A.The bug has not been identified,with certainty, yet.We don`t even know if the smear findings indicate the exact same bug. B.Though Lyme- research is poor- We have absolutely no research in this field (apart from Frys results).There is no research regarding MIC/MBC of different antibiotics.Therapy relies on a trial and error method with a very small population.(etc etc) Anti-Malarias are tried.(At least with Lyme there is scientific evidence that they work because they bust cyste-forms of the spirochette etc etc)
I know this is not popular here- but we should , in fact,do our share in making CDC, the medical community,etc etc interested.As I see it, that is our only hope that the necessary research will be initiated.As of now, many sufferers will be misdiagnosed,looked at with suspicion and ignored by doctors and hospitals.
Personally there is little doubt in my mind that Lyme in itself is not the bigger problem and that a very large group here in Lymenet who believe to be still fighting Lyme after lots of Lyme treatment is in fact infected with other things- and in particular this/these bug(s).
P.S. I just had a look at the new slide/smear on Fry`s website.Things are really complicated now.The third slide is obviously different from no2- which is closest to the what most posters here have.Different phenomena?Have the same bacteria got different cyclical appearances? There seems to be a PCR- "description" of no 3?(that it is a mollicute)and different from no2 in that it is haemoplasma like?? So- which have they partly identified no2 or no3.Are they the same??????
thanks for the really bad news Gale
[ 11. July 2008, 07:29 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
thanks for sharing this info from dr f.
I have a Fry labs slide that shows 'consistant for bartonella spp' this was done prior to the lab labeling it differently as they are now.
Do you know if he is finding levaquin to be helpful, i found that has helped me the most so far.
thanks again. I hope he does get to the CDC etc.
-------------------- "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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quote:Originally posted by Leigh9O: [QB] He said he works continually to find out what this thing is and how to effectively treat it.. sometimes its by trial and error.
He is also trying to get the word out to the medical community and the CDC that we are dealing with a new unnamed bacteria here.. and it is devastating people's lives.
/QB]
Leigh,
Thank you very much for this report. While it is indeed depressing on one side it also leaves room for hope.
At least someone is doing something and it is also my feeling that so many of us don't deal with Lyme anymore but with something else.
Word has to be spread about this. What use is it to cling to the diagnosis of Lyme when in reality so many of us are suffering from something else?
This may be the reason for "treatment resistant Lyme disease" and broad recognition of it might bring us out of our "Lymenuts" corner.
I hope the CDC will become interested and they will start some research. Hopefully also, Fry will come out with some more interesting findings.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
When I saw him, he said that he was treating this as a parasite because the bacteria clings to the red blood cell.
A parasite is any organism that feeds off another. That is his reasoning for adding an anti-malarial.
Technically, he cannot catagorize it as a parasite, but it still functions as one.
As for not totally eradicating it, don't lose hope. Two years ago, he told us that we could hope for remission, but my daughter may be on antibiotics the rest of her life.
His idea is to knock it down to the point where the body takes over and fights it the rest of the way.
~cantgiveupyet.. I will ask if he uses levaquin and what the outcome is or if he has any patients that are finding results at all with it. He didn't mention it when I was at the appointment, but i will find out for you.
~Kelmo thanks for clarifying further what Dr Fry is trying to explain about the bug(s). I couldn't remember exactly what he was saying other than "Its not classified as a parasite" but doesnt' mean it doesn't act like one.
And I do remember him talking about bacteria, that this was bacterial. He is, however, testing for babesia as well, and that one is a parasite, right?
Sorry, I get these co-infections mixed up at this point still.
How is your daughter doing? Hope she's finding at least some relief.
Gale, Gabrielle, Avl and e1 else.. I will continue to ask questions at my appts, and I will continue to post findings, treatment, and any other info I gather when seeing Dr F.
I will also ask if anyone has had a "clean" smear since testing pos. for the haemobart/myco. Or at least what it looked like after treatment compared to the first smear.
I'm sorry my post wasn't better news. I came home and cried after my appt. He actually said to me "wish it was Lyme so I would know def how to treat you"
But, we do have a dr on our side who is recognizing that everyone with Lyme symptoms may not be suffering from Lyme, but from the co-infections including this new bug.. haemobartonella/mycoplasma.
Dr F also indicated that he goes to many seminars, speaks at them, and has given seminars on the topic as well. He agrees that there is an urgency to getting the word out on this and more research needs to be done.
He did ask if he could test my blood for other researching and he of course didn't charge. I told him to go for it. Anything that can help.
Please hang in here and I pray for you all.
-------------------- God Bless, Leigh Posts: 44 | From phoenix az | Registered: Jun 2008
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Alv
Unregistered
posted
leigh this is scary ....have I mentioned that I have played with 3500mg CO Q10 dosages and found releif for a week and comes back ..
This is high dosages that Hulad Clarck suggest for the Cancer pattient as it reaches the spine and the brain and bacteria deep in the bone.
YES I always tell people-I wish I had JUST lyme ...
By the way -I stoped the levaquin as I finished the 3 months and in 48 hrs my hands and feet turned blue.I came home and took HH capsules...and the blue color went away.BUt the numbness comes and goes...
I feel a need to thank everybody for their efforts to clarify what we set out to do.Thanks to the many contributions We have reached much more clarity- and time has come to revise our strategy, I think.
This topic has become very very long and maybe we should start a new one with more focused attention to new objectives??
What is important to realize, I think, is that we�ll get nowhere if people stop reporting to this/a new topic.Think about it. Fry is the one with the longest trial and error treatment experience.If each and everyone is going to go through the same process with their local LLM in isolation- its simply a waste of life.
Personally ,I think it is diffucult to deal with the fact that the reason that most people are here is that they have made a positive smear test in spite of comprehensive abx treatment as an indication that there is yet no effective treatment (the only abx not yet reported having been tried are the more dangerous hospital abx)But that is how it is.
So
Please keep on posting about new info.Especially about improvement/failures through treatment.
But more important,I think, we still need to do our bit to get this problem recognized by the medical community.Any treatment-breakthrough must be based on more research. Suggestions?
Send my thoughts to everyone harbouring this bug. Gale
P.S. I STILL WONDER ABOUT THE IMPLICATIONS OF THE NEW SLIDE ON WWW.FRYLABS.COM
[ 12. July 2008, 04:20 PM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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Alv
Unregistered
posted
Ok , I will keep reporting.But I can not pay for the Fry lab on and off to find out if I got rid of anything.
I will do only my daughters test..as she is not in antibiotics.
Also I have reached the 15 HH capsules 3 days that I try .I have been on 10 HH capsules a long time -1 month.
I still feel slight vibrations, and on and off burning on the scull.
But I stoped LEVAQUIN ( after 3 months of use) and so far my hands are not blu.I have the warm feeling on my body.Less pain in my joint.I turn and toss around for my shoulder pain , neck , everything in pain but today was less.
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