Topic: To everybody who had a hemobartonella finding in Frylabs
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I've been having some more thoughts(confusions) on my recent testing.
I have tested positive for Mycoplasma pneumonia, so maybe that's what they're seeing on my slide. ???
I have had the BLO symptoms & treatment responses & have no other tests, beside the unknown on the slide, that would give a clue to a particular organism causing that.
I'm now wondering if the "BLO" symptoms might be caused by some combination of the organisms I've found.
I'm thinking maybe it's the Mycoplasma + one or more of the others or perhaps with some, as of yet, undetectable Bartonella.
I've actually tested positive for both B.microti & B.duncani at separate times, so I know I've had both.
Microti is now testing negative and previous testing was consistent with Tx response. The later Babs Sx that weren't corresponding to B.microti tests must have been from duncani.
I also had tested negative TWICE for HGE previously and now tested positive, so I don't know how accurate HGE testing is.
Perhaps something in this combination of slop is creating a biofilm which is enabling other things to survive ABX Tx. ???
This is all so frustrating!!!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Alv
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Galehane !
Question for you:
Do you remmember or had any problem with your tonsils ? Did you ever had tonsilitis and streptococus and staphilococus( spelling ) at all before?
I am speculating for something here .I am trying to link it with my case and the first time I felt the shin pain was linked to my root canals.
I remmember that my jaw got infected while I was having streptococus infections and it was kind of cronic.
At that time I had to be at a surgeon and he had to do a surgery of my last mollars as they were to tight at the end of my jaw and could not come out.That is when my jaw and my shin pain begin at the same time.MAYBE was a coincidence MAYBE not.
Later I had surgery removal of my tonsils .
AGAIN I am just speculating.I know have these, Mucoplasma , bart also and these cocies ( strept or staph) -might have cause the "PERFECT MARRIAGE" in us and this SUPPERBUG!!!!
posted
Hi I'm Gwen's son the guy that actually has lyme but I'm on my mom's username. She's on more than me. Thank God for my mom (an RN) helping me sort this all out.
Anyway, this hemobartonella has me puzzled. The smear from fry labs says "suggestive of Hemobartonella or Mycoplasma spp."
I talked to Alex today at coilmachines.com and he said that he has seen good results with most all of the co-infections but he wasn't familiar with this one.
Has anyone tried rife on this?
I started taking minnocycline last week and my legs are getting even stiffer now. Also, I'm getting a few more mustle spasms but it's not really doing anything else.
Posts: 2 | From Kettle Falls, WA | Registered: Jul 2008
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Alv
Unregistered
posted
I have used rife on BArtonella henselae .
I do not react to it any more...NOTHING AT ALL.
WHILE last year I was.ANd muscle testing shows still BARTONELLA and mucoplasma present.
So is that a bug or two together ???????
I just checked my big book with all frequencies and found the frequencies if HEMOBARTINELLA FELIS and I am going to try it out tonight if I react.I can tell as my machine SINGS when I react to certain pathogens and I feel something on my skin ( CHILLS ) usully ..I have no frequencies on mucoplasma SPP.BUt Mucoplasma general and fermentas.
You state that you have started mino, and that it makes your legs more stiff.My own experience with antibiotics is that it makes evry symptoms much worse.The question really is this, does that change under treatment or not until you have stopped antibiotics again.And maybe not even then. I would be happy to hear about your experience.
Also I think it would be nice to have some more smear-pictures posted - for comparative purposes. (scan the photo, send it to photobucket and download it to this site).
Gale
[ 24. July 2008, 03:59 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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couldnt we have some reports about how treatment attempts are working? Some are taking mino, some clarothromycin, some are trying other combinations? gale
Posts: 268 | From europe | Registered: May 2008
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(also called "Feline Hemotropic Mycoplasmosis" or infection by Hemobartonella felis, or infection by Mycoplasma haemofelis or by Mycoplasma haemominutum)
that article is very interesting..and was updated 06/08/08
Does anyone else have what appear to be little circular clusters of platelets on their slide?
From what I can determine, I see 1 free platelet & 7 of these little clusters. I can't find an image anywhere that looks like what I'm seeing & it's starting to freak me out a bit.
Leave it to me to notice this on Saturday when I can't call anyone to ask about it.
My erythrocytes all appear to be very dark, only one has a small, off-center, elongated clearing in the center.
The best I can come up with for the dark-centered erythrocytes is that perhaps they are reticulocytes that haven't developed into erythrocytes yet. That could be caused by anemia.
Seeing as there is an anemia "caused by chronic disease" which could result in high production of reticulocytes, I'm guessing my dual Babesias may be causing this. ????
I haven't figured out anything for the strange circular clusters yet. Maybe they're not platelets, but Babesia looking to infect the new red blood cells. ????
[ 26. July 2008, 12:15 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
H. Neimark, K. E. Johansson, Y. Rikihisa and J. G. Tully Department of Microbiology and Immunology, College of Medicine, State University of New York, Brooklyn, NY 11203, USA
The recently proposed transfer of four rickettsias from the genera Haemobartonella and Eperythrozoon to the genus Mycoplasma with the Candidatus status is herein revised.
This is because the Candidatus designation is for new, incompletely described taxa, in order to give them a provisional status.
Thus, 'Candidatus Mycoplasma haemofelis' is revised to Mycoplasma haemofelis comb. nov., nom. nov.,
'Candidatus Mycoplasma haemomuris' is revised to Mycoplasma haemomuris comb. nov., nom. nov.,
'Candidatus Mycoplasma haemosuis' is revised to Mycoplasma haemosuis comb. nov., nom. nov. and
'Candidatus Mycoplasma wenyonii' is revised to Mycoplasma wenyonii comb. nov.
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Ahaaaaah...
Good find Northstar!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
hi the discussion about haemobartonella and frylabs has for now moved to the other thread by hiker53 Gale
hope it returns at some point
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Alv
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I will return when I get back the results of the BLOOD work from FRY done for my daughter .
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METALLlC BLUE
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Today I join your fold. My Fry Lab report came in yesterday and I drove down to pick it up.
I received my results from Fry Labs. The results are not surprising to me.
I was diagnosed by Dr. D in Massachusetts on February 16th of 2002. No testing was performed by him. I later in 2008, got myself tested through Igenex, Labcorp, and Fry Labs. Each demonstrating infection, or high probability.
Fry Lab Blood Smear
Few Coccobacilli adhernt to erythrocytes. This is suggestive of Hemobartonella or Mycoplasma spp."
The conclusion I've drawn is simple. I have BLO. It's clear as day. I responded to Bactrim, partial response to Tetracycline, I'd used Levaquin previously, again, good response - But I was using Bactrim at the same time.
I recently redid a Bactrim experiment subjective by itself. The results were clear. Extreme Herxheimer reaction on the 7th day, it ended on the 9th and my health suddenly improved. The 10th day I improved even further. I then discontinued the experiment.
I'm going to perform a second subjective experiment using Levaquin shortly. I'll do another 2 week course.
All other testing was negative through Igenex. So we know for certain now that I have the BLO that Dr. Burrascano talks about.
Hair loss Shooting Pains Neck and joint pain Fatigue Hypersensitivity Sound sensitivity Light Sensitivity
---------------------------
The rest of my symptoms are moderate, low or entirely resolved. Here was the progression of my disease status from the beginning, until new symptoms stopped occuring. Here is a summary of my experience, and then the list of symptoms in order of appearance.
I grew up in E. Longmeadow MA. I camped and visited the beach areas of Westerly RI, and southern CT Old Lyme as a young child. I was active in exploring the woodland areas. In 1987, Age 9 after coming home from Westerly RI, I fell ill, with joint pain, flu-like symptoms, muscle pains, and severe pain in my legs which caused debilitation. No rash was seen, nor do I remember one, but I wasn't looking for one.
Age 9 - 14: After the initial flu-like symptoms, I experienced sporadic chronic fatigue and serious depression. The flu-like fever and pain disappeared. Vision disturbances increased, including: seeing stars, losing my vision a few times, light sensitivity, drowsiness as well as cognitive deficits in memory and other areas.
Age 14 - 17: Prior symptoms increased considerably. New symptoms including: suicidal thoughts, mania, depression, fatigue, pain, visual problems, nightmares, as well as systemic pain through my muscles, internal organs, and especially my digestive system. Physical exertion during sports would cause black-outs.
Age 17 - 21: I developed bleeding from the rectum, severe abdominal pain, nausea, stomach cramping, heart palpitations as well as multiple chemical sensitivities. If I ate anything that contained sugar/refined simple carbohydrates, dairy especially Milk the symptoms would increase significantly. I had become allergic to almost all foods and began to no longer eat. Motor coordination increasingly deteriorated, muscles weakness became profound. I experienced exhaustion, numbness, headaches, and finally full blown chronic fatigue, hair loss, chronic muscle and joint pain, serious psychiatric problems and light and sound sensitivity.
Age 22 - 29: Every week between 12/99 and 04/00 I noticed about 5-10lbs being lost. I was 205lbs and then 125lbs in 4 months. I was diagnosed with a lot of ailments, but this was the first ``physical'' diagnosis that the physicians could see. Crohn's Disease, Acid Reflux were diagnosed. Once diagnosed with Lyme, at age 24, I began improving inconsistently after 4-6 months, and then relapse continued throughout the course of treatment thru the present. Periods of improvement have increased from a week or two during 2002, a day here, a day there, to about 2-3 weeks in 2003. In 2004, symptoms continued to be difficult, but around 1 month, if added up, I felt around 40% functional. 2005, IV antibiotic therapy lasted 4 weeks, and I improved for about 3 months. In 2006, again, I was improving for 2-3 months. At my worst, I was 5% functional. 65% is the best I've felt, but only briefly.
Symptoms History
* 1987 - Unexplained flu symptoms: fevers, sweats, chills * * 1987 - Swollen glands * * 1987 - Difficulty with concentration or reading * 1987 - Forgetfulness, poor short term memory * 1987 - Joint pain or swelling * * 1987 - Muscle pain or cramps * 1987 - Memory impairment or loss "brain fog " * 1987 - Dyslexia and word-finding problems * 1987 - Attention deficit/hyperactivity disorder * 1987 - Anxiety * 1988 - Nightmares * * 1988 - Sore throat * * 1988 - Fatigue, tiredness, debilitating * 1988 - Confusion, difficulty in thinking * 1988 - Visual/spatial processing impairment trouble finding things, getting lost, bumping into things * 1988 - Slowed processing of information * 1989 - Sleep Disorders, insomnia, waking up constantly. * 1990 - Violent behavior, irritability * 1990 - Rage attacks/impulse dyscontrol * * 1990 - Lightheadedness, wooziness, difficulty walking * 1990 - Tremor * 1991 - Depression * 1991 - Antisocial behavior * 1992 - Exaggerated symptoms & hangover from alcohol * 1992 - Twitching of the face or other muscles * 1992 - Headaches * * 1992 - Blackouts/Fainting * * 1992 - Tingling, numbness, burning, stabbing sensations * 1992 - Heart murmur, valve prolapse, pulse skips, * * 1992 - Stiffness and cracking of the joints, neck, or back * 1992 - Eyes: double, loss, blurry, pain, increased floaters * 1992 - Ears/hearing: buzzing, ringing, ear pain * 1992 - Dizziness, poor balance. * 1992 - Sexual dysfunction or loss of libido * * 1993 - Unexplained weight change * 1993 - Shortness of breath, cough, * * 1993 - Change in bowel function constipation, diarrhea * * 1994 - Obsessive compulsive disorder OCD * 1995 - Abdominal Pain, Acid Reflux, Nausea * 1995 - Rapid mood swings that mimicked bipolarity * 1996 - Disorientation: Getting lost, going to wrong places * 1996 - Excessively itchy skin * * 1996 - Hands and/or bottom of feet ache * 1996 - Blood sugar changes * * 1996 - Photophobia * 1996 - Phonophobia * 1996 - Upset acidic stomach and nausea * 1996 - Chest pain or rib soreness * 1997 - Unexplained hair loss * 1998 - Cold hands/feet, Clammy * 1998 - Night sweats * 1999 - Transient muscle pain which jumps around the body * 1999 - Extreme weight loss 80lbs in 4 months * * 2000 - Sleep Paralysis * * 2000 - Testicular pain * * 2000 - Crohn's Disease * 2000 - Irritable bladder or bladder dysfunction * * 2000 - Panic attacks * * 2000 - Facial paralysis, drooping eye lids Bell's palsy *
Blood Testing
********Many of these tests I've had "over and over" again, so I've only listed those which I felt reflected abnormalities over the long term.********
Quest Lab WB: IgG 41kDp Positive
Quest Lab SED ........................................1 Range 0-15 Antigliadin IgG .........................49H Range 0-19 Antigliadin IgG 4........................29 Range 81-463 RDW ....................................14.4 Range 11-15 EOS ................................. 0 Range 0-5 BASO ......................................O Range 0-3 ATYP L ....................................0 Range 0-5 BUN ........................................24 Range 7-25 Absolute Eosinophil .....................0 Range 15-550 Absolute Basophil Count ..............0 Range 0-200 Absolute Atypical Lymphocytes .....0 Range 0-200
Epstein Bar EBV-VCA IgG 2.2 Range 1.1 > EBNA Antibody 4.6 Range >1.0
Heavy Metal Blood
Arsenic <3 Range <23 Mercury 4 Range <=10 Lead <2 Range 0-25
HLA-DR Class DNA Typing
HLA-DRB1 07 DR7 HLA-DRB1 09 DR9
Albumin of .............................3.1 Low Visceral Protein Malnutrition Alk Phos ...............................122 High Amylase ............................... 119 High Prealb ................................. 16 Low EOS .................................... 0 Low 0-5 BASO ................................... 0Low Range 0-2 Monos ..................................12 High Range 0-12 RBC ................................. 5.6 Range 4.5-5.5 High MPV ..................................11.7 Range 7-11 High WBC .........................................High End of Range Sed Rate .................................3 0-15 Low end of range
WBC .................................17.6 H Range 4.8-10.8 RBC .................................3.7 L Range 4.5-5.5 HGB .................................10.2 L Range 13-17 HCT................................. 31.6 Range 40-51 RDW .................................15.7 Range 11.15 PLT .................................121 L Range 130-400 MPV ..............................11.5 H Range 7-11 Mono ..................................13 Range 0-12 Neut .................................88 H Range 41-85 Band .................................27 H Range 0-4 Lymph .................................1 L Range 15-48 Sed Rage ..........................27 H Range 0-15
NA................................. .132 L Range 133-145 K ...................................3.4 L Range 2.5-5.2 CL .................................111 H Range 96-108 Co2 .................................21.3 Range 21-32 BUN ....................................5 Range 5-25 MG ..................................1.8 Range 1.8-2.4 CRP .................................16.23 Range .08 - .80
7-8 Upper and Lower G.I. scopes Inflammation of Ileium, Adjacent Colon, Rectum, with Perianal Fistual, and severe eroision of the upper stomach Reflux and Gastritis
Lower G.I. Barium: Inflammatory disease of the terminal ileium.
Comprehensive Stool Analysis: Low N-buytrate, extremely low levels of lactobaccilli and Bifidobacteria. High levels of Citrobacter freundii, High levels of Klebsiella. Extremely high levels of Candida Albican. Dysbiosis was severely evelevated suggesting extreme alteration of gut bacteria.
CT scan of abdomen: mild muscosal thickening of lower bowel Cecum, Right Colon and Transverse Ileium
Physical Examinations:
Significant Trigger points on large and small joints. Multiple trigger points along back, chest and arms suggestive of Fibromyalgia Hyperreflexia of the major joints Snellen Test: Right Eye 20/25, Left Eye 20/20, Both Eyes 20/20 Mild to Moderate Photophobia and Phonophobia
Neuropsychiatric Evaluation:
Significant problems with visual short term memory, considered in the range of mild impairment. Auditory recall appears borderline level of functioning. Visual tracking and letter number sequencing average to low average range. Results indicate Memory difficulties consistent with right temporal lobe impairment of the Brain SPECT. Diagnosis: Major Depressive Disorder, recurrent, severe, Chronic Lyme Disease. Problem areas include social environment, educational, occupational, economic, and access to health care. Current Global Assessment of functioning, Score 40. Highest GAF in past year: 40
Ritalin SR 20mg - ...................................No Response Lithium -............................................... No Response Prozac - ...............................................No Response Disiprimine - ...........................................No Response Eskalith 400mg x 2 - ................................No Response Norpromine 100mg po t.i.d - ......................No Response Imuran - ................................................Poor Response Cefotan - ..............................................Fair Response Percocet - .............................................Fair Response Proctofoam - .........................................Poor Response Nitroglycerin - ........................................Poor Response Lorazepam 1mg x 1, then 2mg x 1 - ............Great Response Protonix 40mg x 1 - .................................Great Response Nexium 40mg x 1 - ...................................Great Response Sulindac 150mg x 1 - ................................No Response Roxicet 5/325 - .......................................Fair Response Trovan - ................................................Great Response Metronizdazol 250mg - ..............................No Response Zithromax 250mg and 500mg - ....................No Response Prednisone 10mg, raised to 80mg in total over time. Initial Fair Response, Then Debilitating Poor Response and Relapse. Azathioprine - .........................................No Response Cipro 250mg -......................................... No Response Prilosec - ...............................................Great Response Asacol 3,600mg per day -.......................... No Response Tuberculine S ...........................................No Response Methotrexate - ........................................No Response Paxil 20mg - .............................................Poor Response, Induced Panic Attacks Remicade 3 infusions 300mg - .....................No Response Morphine 15mg - .......................................Fair Response Zoloft 50mg - ..........................................Poor Response - Induced Panic Attacks Demerol - ...............................................Great Response Removed All Pain Pentasa 1,000mg x 4 - ..............................Good Response Reglan 5mg po a.c. - .................................Great Response Tylenol 650mg - ........................................Fair Response Aspirin 625mg - .........................................Fair Response Droperidol - ..............................................Poor Response Prevacid 30mg - ........................................No Response Ambien 10mg - ..........................................Poor Response Amitripyine 25mg x 1 - ................................No Response Compazine 10mg every 8hr, .........................Great Response Tetracycline 750mg x 2 then 1,000mg x 2 - ....Good Response, Relapsed Biaxen Clarithromycin 500mg x 2 - ..............No Response Plaquenil 200mg x 2 - ..................................No Response Tramadol 50mg as needed, ..........................Good Response Oxycondone 5mg through 325mg every 4hr, ....Great Response Lidocaine 2% gel, ......................................Great Response Phenergran 12.5mg po 4-6hr as needed - .......Great Response Penicillin VK 1000mg x 2 - ............................Good Response, Relapsed IV Vancomycin 1gram through 1.250gram -..... Good Response, Relapsed Lamictal 100-300mg - .................................Good Response Bupropion 100mg -300mg - ...........................Fair Response Sonata 10mg - ...........................................Poor Response Trazadone 50mg - .......................................Poor Response Lunesta 2mg - ............................................Poor Response Hydroxzine HCL 25mg - ................................Great Response Ranitidine 150mg x 1 - .................................No Response IV Levaquin - .............................................Great Response, Relapsed Zantac 150mg x 2 -.................................... No Response Sulfameth Trimethoprim Bactrim 800/160 x 2 - Great Response, Relapsed Darvacet - Induced Panic Attakcs Hydrocortison Cream 2.5 Propoxyphene 100WAPAP650 1 or 4 every 4h. Good Response, Relapse
Antibiotics & Support:
8 Weeks Arithrymycin Zithromax -- No Response 24 Months Weeks Plaquenil -- .......No Response 48 Months Tetracycline -- ......... Good Response, then Relapsed 4 1/2 Weeks IV Vancomycin & Oral Penicillin -- .Good Response, Then Relapsed 24 Months Clarithromycin Biaxen -- No Response 2 1/2 Weeks Sulfameth Trimethoprim Bactrim -- Great Response - Relapsed 2 1/2 Weeks Levaquin IV - ...........Great Response - Relapsed 2 1/2 Weeks Oral Levaquin - .........Great Response - Relapsed
Herbal/Alternative
8 Weeks 4 Life Transfer Factor Plus Great Response, Relapsed Nutrimedix Samento - ....Strong Herx, Relapsed Nutrimedix Burbur -- ....Fair Response, Relapsed Nutrimedix Banderol --...Good Herx, Relapsed Nebulized Glutathione -- Strong detox reaction, Relapsed
I've taken a lot more herbal supplements but the results were of no noticeable value in clinical response.
Summary The BLO Dr. Burrascano talks about at length is the same Hemortonella/Mycoplasma we're seeing on these tests. No, we do not know what it is. It is a near species. It "does" respond to antibiotics, and can be -- in some cases put into a remission, or in-fact cured in some instances based on Dr. Burrascano's presentations and claims
It is not Mycoplasma, nor Bartonella H or Q as traditionally understood. However, when testing, the genus of Bartonella shows a reaction far more often than Mycoplasma, though the reaction of both is inadequate, with at best 30% accuracy. It is likely Mycoplasma is a co-infection that coincides rather than is the BLO we're seeing, though possible two separate bacteria, both appearing to look the same, could be one of the Bartonella Genus, and one of the Mycoplasma Genus. It is certainly not Bartonella H or Q though nor any commonly know Mycoplasma.
Patients testing postive for Mycoplasma or Bartonella via antibodies is "not" a parameter for this new species showing on the slides, though cross-over reactions may be present, given it could be two separate bacterium appearing as one in the visual field, or....one alone.
Experience via LLMD's points that anti-malarial drugs "do not" work on this BLO bacterium.
Clindamycin is debateable entirely, given some patients with this see no results at all, while others do. It could be matter of strains, two different bacteria, or -- something entirely unrelated, another co-infection outside the realm of this discussion of BLO (Hemobartonella/Mycoplasma spp)
BLO and Lyme Disease are present in my case. Treatment response indicates the Tetracyclines (, Tetra,), as well as Bactrim, Levaquin, Vancomycin in combination or included in a treatment regimen staggard may be of significant value. Lyme Disease seems to "always" be present when BLO is present, indicating that the infection alone may not cause disease, unless immunity is compromised as a consequence of Chronic Lyme Disease with Bb. Herbal therapies with impact the immune system by stimulation exaggerate symptoms (Herx) and or signifcantly improve symptoms temporarily. These may be of value when combined with appropriate antibiotic treatment.
Macrolide antibiotics actually decrease the treatment value of antibiotics which do work on BLO, but when used alone, or via IV, the Macrolides of Zithromax, and Biaxen have no value on this infection.
[ 01. August 2008, 12:09 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
hi welcome in the club that nobody wants to be a member of.Your resume (which looks much like mine) tells why. Personally I think you are right about many of your conclusions about the nature of this bug and treatment.In order to get things moving I hope you find it important and will help to draw attention to this inf. in the "outside world". We shall never know if mystery bug is a BLO as nobody knows what a BLO is.However, if treatment experience from "BLO" is helpful please tell: How does levaquin work this time?(many here report that antibiotics once used with success dont work the second time). Anyway- the information in Hikers topic seem to indicate that Fry is not far from a break-through.Maybe that will be helpful.
gale
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: hi welcome in the club that nobody wants to be a member of.Your resume (which looks much like mine) tells why.
It is unfortunate.
quote: Personally I think you are right about many of your conclusions about the nature of this bug and treatment.In order to get things moving I hope you find it important and will help to draw attention to this inf. in the "outside world".
I'm working on it exhaustively at present.
quote: We shall never know if mystery bug is a BLO as nobody knows what a BLO is.
Blo, we know responds to antibiotics. Therefore you presumption that it is a bacterium is highly, extremely, probable. BLO, in my opinion is a label of insignificance, unfortunately. We call it Bartonella, but it is not H or Q as tested for. We call it Bartonella-Like -- which is similar to the "compatible with Lyme-like illness."
quote: However, if treatment experience from "BLO" is helpful please tell: How does levaquin work this time?(many here report that antibiotics once used with success dont work the second time).
I will perform the second subjective Levaquin experiment shortly, and report back. I suspect, that the treatment must be given for 1-6 months, though Dr. Burrascano recommends 3 + depending on the patients response.
It appears to me, if you decipher the difference between Cipro and Levaquin, from that of Bactrim, -- then view the Tetracycline family, and Rifampin family, you will find the specific chemical compound or action, which is inhibiting this organism. Levaquin appears to work the best, so what is it about Levaquin that is different in it's function? Speculation can breed hypothesis, and a Hypothesis may remain theoretical, but -- could prove useful.
Levaquin works by inhibiting DNA Gyrase.
Bactrim or Sulfamethoxazole acts as a false-substrate inhibitor of dihydropteroate synthetase. Sulfonamides such as sulfamethoxazole are analogues of p-aminobenzoic acid (PABA) and are competitive inhibitors of the enzyme; inhibiting the production of dihydropteroic acid. Trimethoprim acts by interfering with the action of bacterial dihydrofolate reductase, inhibiting synthesis of tetrahydrofolic acid.
Rifampin acts directly on messenger RNA synthesis. It inhibits only prokaryotic DNA-primed RNA polymerase, especially those that are Gram-stain-positive,
So investigation into the microbe itself may be of little value to us (Fry or others can much more easily accomplish that), but rather indirectly, we may be able to identify what part of the microbe is responding to the antibiotics which are clinically demonstrating a response. If we understand the majority of the mechanisms behind the antibiotics showing clinical response, we might be able to identify a pattern.
In addition, it is possible, if not probable this infection builds resistance, given the reports of a primary significant response, and a lesser or a disappointing non-response in secondary treatment.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
Gale--- You asked if someone had a ring-form? i can't find the post.
Yes, i have a ring-form on one cell. The center of the erythrocyte is pale, then encircled by a dark line circle which is broken, missing about 20 degrees. The outer edge or ring of the erthyrocyte is medium gray.
-----pamois.
Posts: 1226 | From USA | Registered: May 2007
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This just to encourage everybody to do what they can to call attention to "mystery bug" in the broad medical community, have it identified so treatment can be found.
Think it will be appropriate to close this topic soon- and start a new one with only two obejctives
a.What can be done to identify the bug b.Responses to treatment attemps
Gale
[ 03. August 2008, 04:10 PM: Message edited by: galehane ]
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METALLlC BLUE
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Member # 6628
posted
I think you should keep this one open, and still open a new thread. JMO
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I dont get the fact that there are no postings here about people trying to have this bug identified. To me it is rather obvious that the resources of so-called LLMDs are so limited that nothing will happen regarding identification and treatment if the "outside" world is not involved."Mystery bug" will remain yet another mythological BLO. PCR for an unknown organism is like finding a needle in a heystack- this is obviously what is going on at the moment in the Arizona lab.It can take ages.Cultivation attempts requires lots of resources. It is absolutely necessary for everybody with a positive finding to do something about it.Believing that your problem can be solved by your LLMD seems to me to be unrealistic
yours Gale
[ 07. August 2008, 09:42 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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METALLlC BLUE
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posted
Where is this tour?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
kelmo
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posted
No, it's not a tour, per se. I'm a patient, and when my daughter was getting her blood drawn in the next room, Dr. F showed me around the lab.
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Gale
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Alv
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posted
OK! I read the post from KELMO and is interesting as I keep showing MUCOPLASMA ( 2 days ago as I felt my pain in my back almost killed me and my jaw )as active right now and LYME.
I am sure bart is not gone( still on my jaw besides my ears and my back). matches my case as I need to treat it as BART and shows in muscle testing right now as MUCOPLASMA!!!
I am reporting it as I am trying to identify that bug and what works on a diferent way-based on muscle testing .So hope this post is helpful to others to consider it.
Right now I am on levaquin and FLAGYL ( best combo for me so far -weird hee...can treat a parasite and covers lyme , bart and muco at the same time ).My tremors , twitching and vibration are gone on this combo and my pain on my spine and jaw lowers and numbness on my face goes away!
posted
hi The link to Kelmos report does not seem to function- so I ll just post the important clues from Kelmo`s visit to Fry
"mystery bug" is a bacteria normally found in animals that has now adapted to humans.
The lab is extremely small- there is a PCR there. (on the website it states that they are in the process of introducing PCR for diagnostic purposes)
T-gene is not used (that was reported earlier)Arzona State Uni facility is used for further identification of the bug??
Dr Fry uses his own stain for smears.
Dr Fry finds the hubhub over the change in classification amusing?
Regarding treatment Fry says that he will treat it like bartonella.He also refers to it as mycoplasma.
XXXXXXXXX
What does all this mean in combination with the information contained in the many posts above?
1.What we have (and I take it for a fact that the smear-findings are not artifacts) is an unknown human pathogene.It is a bacteria but neither Bartonella,Mycoplasma or Haemoplasma.
2.Fry is trying to identify it.(A PCR-method for this purpose is like finding a needle in a heystack- my remark). Work is being done in an University facility.(Might be attempts to cultivate the bacteria- which might simply be impossible-my remark).
3.The infection with this bug seems to be
*widespread- not necessarily tick borne. *responsible for many problems up till now thought to be caused by Lyme. *Causes a comprehensive list of symptoms also of an auto-immune nature. *much harder to treat than Lyme. *no reports of treatment successes. *Not recognized as a human pathogene by med authorities.They simply have no knowledge/information about it. *Many people have been misdiagnosed as having Lyme or Bartonella (because of serological cross-reaction).In fact, "mystery bug" has (also?) been and is the problem. *Thus,a secure Bartonella- diagnosis based only on serology only is not enough.You need to have a pcr confirmation of skin nodules or the like. *There is no way of diagnosing this mystery bug infection.There is no antibody test, no PCR test, no cultivation options.Until identification the smear findings may and will be questioned.
Very few report here about their treatment attemps.Also, most seem to rely on their LLMD to help them out of the mess. For reasons stated in posts above I think this is not a strategy that opens perspectives. In consequence,this topic should be closed and replaced by a topic with a new more promising focus.
yours Gale
[ 10. August 2008, 05:02 AM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I saw Dr. Burrascano speak, just recently, prior to Cure-Unknown coming out. When asked about Bartonella he said:
This is what I recorded based on having heard him speak:
"I think Bartonella is a big big topic, as big as Lyme itself. It's one of the co-infections that can be found in ticks and in Lyme patients. It causes in my opinion, the bulk of the chronic terrible neurologic symptoms that Lyme patients get including seizures and hypersensitivity to the environemnt, as well as G.I. issues. The problem is that the germ we are seeing and that I have been calling Clinical Bartonella, does not behave like cat-scratch disease Bartonella, it does not respond to antibiotics the same way, it causes a different spectrum of symptoms that acts more like another tick born infection called Tularemia, Tularemia is known to be an acute infection that you can get through a tick bite but none of the literature that I've searched has ever described a chronic form of Tularemia. So my thinking is that what I've been calling Clinical Bartonella is either a variant of Cat-Scratch Disease that has not yet been described or it's a variant of Tularemia which has not yet been described."
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Dr. Burrascano also says:
" Indeed, there seems to be a fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However, several aspects of this infection seem to indicate that this tick-associated strain of Bartonella is different from that described as "cat scratch disease".
For example, in patients who fit the clinical picture, standard Bartonella blood testing is commonly non-reactive. Furthermore, the usual Bartonella medications do not work for this- they suppress the symptoms but do not permanently clear them. For these reasons I like to refer to this as a "Bartonella-like organism" (BLO), rather than assume it is a more common species.
Indicators of BLO infection include symptoms involving the central nervous system that are out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CMS, with agitation, anxiety, insomnia, and even seizures, plus symptoms of encephalitis, such as cognitive deficits and confusion.
Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles, especially in the AM, tender subcutaneous nodules along the extremities, and red rashes.
These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red papular eruptions. Lymph nodes may be enlarged and the throat can be sore.
Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is very insensitive. Therefore, the diagnosis is a clinical one, based on the above points.
Also, suspect infection with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with a significant course of specific treatment.
The drug of choice to treat BLO is levofloxacin (Levaquin). Levofloxacin is usually never used for Lyme or Babesia, so many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact be infected with BLO.
Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least one month. Treat for three months or longer in the more ill patient.
It has been suggested that levofloxacin may be more effective in treating this infection if a proton pump inhibitor is added in standard doses. (i.e. Nexium, Prilosec, Protonix, etc)
Another subtlety is that certain antibiotic combinations seem to inhibit the action of levofloxacin, while others seem to be neutral.
I advise against combining Levaquin with an erythromycin-like drug, as clinically such patients do poorly.
On the other hand, combinations with cephalosporins, penicillins and tetracyclines are okay. Alternatives to levofloxacin include rifampin, gentamicin and possibly streptomycin.
Levofloxacin is generally well tolerated, with almost no stomach upset. Very rarely, it can cause confusion and insomnia- this is usually temporary, and may be relieved by lowering the dose.
There is, however, one side effect that would require it to be stopped- it may cause a painful tendonitis, usually of the largest tendons. If this happens, then the levofloxacin must be stopped or tendon rupture may occur.
Unfortunately, levofloxacin and drugs in this family cannot be given to those under the age of 18, so other alternatives, such as azithromycin and/or rifampin, are used in children.
Incidentally, animal studies show that Bartonella may be transmitted across the placenta. No human studies have been done.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Dr. Schaller said:
"Nor do I see that anyone seems to know virtually anything useful about the treatment of"atypical" Bartonella, which is much more common then silly current numbers using junk labs and which can kill and has about 200 symptoms, and is fully ignored and is in so many vectors like ticks and fleas and dust mites and cat contact, that it may make Lyme look highly small in cases in the next decade, even as deer expand in numbers and states. And Bartonella (BLO) has very powerful immune suppressor chemicals which make it hard to kill many infections."
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
quote: felt my pain in my back almost killed me
My daughter has this pain every day. If we could find a combo of drugs to take this away, she would feel like a new person.
Dr. F won't prescribe Leviquan. Hopefully, we can find success on another combo.
Metallic. I think those are great quotes. Interesting about Tulremia. When my daughter had her blood test done at Fry in March of 2007, Bartonella/Tulremia was what came up
It's hard for me to put into words what the doctor said. I was having cognitive issues that day and couldn't absorb one more concept.
Gale-He said the bug won't replicate in a dish, that they may have to use mice.
On a side note. A radio talk show host here in town (we're in a state bordering Mexico) recently wrote a book called, "Another Man's Sombrero". There is a chapter in this book that discusses the diseases that are coming into the USA due to the illigal immigration (from all countries that sneak in through the southern border).
Something that isn't reported: Leprosy cases have risen DRAMATICALLY since 2000. They have renamed it Hansen's Disease. My LLMD said that 90% of the animal population along the border test positive for bartonella. (Can't verify that number).
We believe that mosquitoes are the vector of choice in our quadrant of the USA. We have had a noticable increase in West Nile in the past few years, with more deaths.
My doctor has always believed that Bartonella is the cause of "chronic Lyme".
Posts: 2903 | From AZ | Registered: Feb 2006
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My doctor has always believed that Bartonella is the cause of "chronic Lyme".
Well here we are.Personally I think your doctor is completely right.The consequences are huge- not least for the Lyme community,which will have to change their attitudes in a fundamental way.
I dont understand what happens in this forum.I can not find any perspective in "amateurs" like us try to find out what this bug is all about. For now there is ONE- yes ONE, ordinary MD with very limited resources trying to identify and find a treatment for this bug (these bugs).
I have tried to persuade people to do something in order to get the message out so that this major health issue can be addressed by resourceful doctors and institutions. This has led to criticism of CDC etc. Fact is : Only 2 patients have reported their findings and suspicions to the organization.Until state and federal organizations get involved nothing is going to happen for the next 10 years.
I `ll start a new topic with this objective only for those who have ideas and want to do something about it.
Yours Gale
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METALLlC BLUE
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posted
Plenty of research has been done on the actual borrelia burgdorferi Spirochette indicating Chronic Infection. By itself, it can cause Chronic Lyme Disease. When Co-infections are involved, it really makes it even more Chronic. It is, like you're probably suggesting, that people who could probably control the infection via immunity, end up breaking down under the weight of additional co-infections.
That's based on the studies from the Pubmed database.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
No that`s not quite what I am suggesting.Very much research on Lyme has been made.The effect has been, I think, a paradigm with the headline "Lyme and Co-infections".The fact, however, is that most of the co-infections are much more difficult to treat compared to Lyme.In particular this is true for "mystery bug"
Yours Gale
Posts: 268 | From europe | Registered: May 2008
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METALLlC BLUE
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Member # 6628
posted
Oh oh oh, I see what you're saying now. Yeah, absolutely! We don't know what the hell else is contributing to the "Complex" in your average person. It's obviously much more complicated and severe, and these co-infections, by what we see on the forums are insane, some seem extremely persistent with ongoing positive PCR's etc too in some cases.
What do you think of the possible connection to Tularemia as Dr. Burrascano suspects? He's working closely with various laboratories and researchers trying to figure out exactly what this is (He said). I suspect he's in contact with Dr. Fry.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I never used this antibiotics that are listed here.
Which lab is the best to do a test on that !Is it FRY lab ?
I wander why Metallic Blue felt better on TETRACYCLINE if my memory serves me well.Kelmo have you used gentamicin or your daughter ?
Also based on ------------------------------------------------------- The drug of choice to treat BLO is levofloxacin (Levaquin). Levofloxacin is usually never used for Lyme or Babesia, so many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact be infected with BLO.
Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least one month. Treat for three months or longer in the more ill patient.
It has been suggested that levofloxacin may be more effective in treating this infection if a proton pump inhibitor is added in standard doses. (i.e. Nexium, Prilosec, Protonix, etc)
Another subtlety is that certain antibiotic combinations seem to inhibit the action of levofloxacin, while others seem to be neutral.
I advise against combining Levaquin with an erythromycin-like drug, as clinically such patients do poorly.
On the other hand, combinations with cephalosporins, penicillins and tetracyclines are okay. Alternatives to levofloxacin include rifampin, gentamicin and possibly streptomycin
------------------------------------------------
Does it mean that using levaquin is stoping my myoclonueous jerks on my body and the vibrations b/c I am using levaquin and it covers the antibiotics that are mentioning in there...?
Please let me know who runs the test for TULAREMIA ?
I have got no idea what Burascano is doing now- but you probably have a better chance of contacting him than I have,if you think that may be helpful.Send him the smear pictures!
Tularamia-dont know.My test was negative.
But I am an amateur- so my strategy is still to try to make the pros interested. It is not a coincidence that Lyme was the first recognized tick-borne pathogene.Much easier to cultivate than the pathogenes discovered much later. Cultivation of "difficult" bacteria may take years (if possible at all) and win the succesful scientist prizes- so I think we should use our time in a more productive way than merely guessing.
yours Gale
[ 10. August 2008, 03:13 PM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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Gale
Posts: 268 | From europe | Registered: May 2008
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kelmo
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Member # 8797
posted
My daughter hasn't been on gentomyacin. She has been on only a small handful of abx. Most recently minocycline.
She has added mepron to it, just for funzies, because we just love for her to be depressed.
We will most likely be adding plaquinil to the mix, soon.
Her breathing problems significantly improved after the first year of treatment. In fact, there is no breathing issue at this time.
Posts: 2903 | From AZ | Registered: Feb 2006
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quote:Originally posted by swedish lyme sufferer: If Hemobartonella is indead a mycoplasma species BLO MIGHT be mycoplasma, mycoplasmas do respond to fluroquinolones too. [/QB]
Are you aware that there are US patents on mycoplasmas?
Posts: 37 | From Connecticut | Registered: Jul 2008
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I brought this back up because I just want to know where we are with haemobartonella/mycoplasma findings - For those that had this finding has your test changed to the new yet un-identified protozoa? or do you have both findings?
Alot has changed in a year, any new info or updates from the orginal posters or anyone else? --------
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Bringing this long discussion up....anything new here?
Has the Fry Lab now decided that they see both a parasite and a coccobaccilli, or just a parasite/protozoa? Want to catch up.
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