I have been diagnosed with the dreaded BLO. I have it pretty bad and am considering going on the Biaxin/Plaquenil combination. I have done a lot of herbal treatments over the past year without much success and I am considering using antibiotics for the first time. I want to know if anyone has had this treatment and how they are doing with it.
Thanks
Posts: 7 | From Arizona | Registered: Feb 2009
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CD57
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posted
How have you been diagnosed with the dreaded BLO? What does this mean?
What are your symptoms?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Oh it just means another organism to have to contend with. My symptoms are similar to what everyone else has, fatigue, brain fog, muscle pain, anxiety, insomnia, can have night sweats. I also have a lot of nasal congestion and get very tired after eating. Yes, I have tested positive at Fry Lab for BLO and I am considering treatment for it.
Posts: 7 | From Arizona | Registered: Feb 2009
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CD57
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posted
I think there are a lot of threads on here about Biaxin and Plaquenil in combo.
Did you get a Fry Labs smear, is that what happened?
Posts: 3528 | From US | Registered: Apr 2007
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adamm
Unregistered
posted
I assume by BLO, you mean the "mystery bug."
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seekhelp
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How on earth do you treat something that you don't know what it is, how to kill it, what damage it does to you, if any, etc.? The IDSA would get a field day out of this one! I thought it was undetermined if it's even causing health issues at this point.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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tickbattler
Unregistered
posted
turbo, Can you describe your Fry labs photo?
Were there little black dots attached to the outside of your blood cells? Did Fry call is hemobart or mycoplasma?
This is the result that I got along with my 3 children. However, two of my children also tested positive for bartonella henselea and bart quintana (antibody tests) as well. They have bart like symptoms too. My children all take bactrim to deal with the bart (or BLO). They are improving slowly. I'm pretty sure I have (or had) bart but my symptoms are not present at the moment.
My husband's Fry lab showed little black dots inside his cells. He has tested positive for bart quintana (antibody test). I'm sure he has bart, as every time he takes levaquin, he improves. We have had a hard time finding an LLMD who will keep him on it long enough and who believes he has bart. Finally he is on it again and we hope it will be long enough to kick the bart (or BLO).
posted
How is it possible to treat something if you don't what it is??
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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METALLlC BLUE
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Bartonella-Like-Organism. No one is entirely certain what it is, though it is circumstantially linked to Bartonella infection as a result of a statistically high number of people testing positive for Bartonella Hen/Quintana, who don't respond to traditional Bartonella treatments. A wide spectrum of antibiotics seem to have no effect on this unknown pathogen, but when specific drugs -- often not used for Lyme Disease -- are given, patients sometimes improve remarkably. These drugs include Bactrim/Septra, Levaquin (sometimes Cipro but to a lesser degree usually), Azithromycin (sometimes, primarily used for children), and a few other drugs like Gentamicin. There is debate over whether Dr. Fry's tests -- primarily the smear -- is finding this organisim, but the evidence at present is flimsy. He's finding something, and we know it's a bacterium -- not artifact as some suggest, given testing has been done demonstrating it is in-fact responsive to antibiotics in vitro.
Dr. Fry isn't even "absolutely" clear on what type of bacteria he's seeing, but he is apparently working hard on figuring it out. Whatever Dr. Fry is seeing, it appears to respond to Clindamycin based on his experience, but I have no further information.
There is the possibility of cross-reaction, triggering some of the Bartonella positive tests, meaning -- another bacterium very similar to Bartonella may be triggering this. It could, I suppose, be another type of Bartonella, or it could be something entirely different. Dr. Burrascano even was uncertain as recently as a few months ago, when he said "It could even be a form of Tuleremia.
We just don't know. BLO stuck as the initial name, but it will evolve to a more specific name as we understand more.
However, again, no one is certain and when treating it, you do so under a presumption based on as much evidence as you can gather. Like Lyme, BLO seems to present itself with symptoms that are both similar and yet dissimilar.
Remember, many things are treated, even if we don't know what we're treating. Usually it's accidental, because we "try" to treat what we do know and clinical experience leads us down a different road as we note other observations -- whether subjectively through patients reports and testing, or objectively, via culture, PCR, DNA mapping etc.
-------------------- 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 had a Dr. Fry blood smear done in Arizona and It indicated heombartonella - what ever the heck that is!
Anyway, my doctor and I use Dr. Sigleton's book as a treatment guide and we started treating me with Rifampin (600mg) and Doxycyline (500mg).
I'm feeling a lot better - but I'm not back to normal yet. As the ABX worked, little spider veins or red blotches would appear under my knuckles and feet and then slowly go away (this is still happening).
I will have been on this combo for two months on March 15th. I hope you get better!
Joe
Posts: 54 | From New Mexico | Registered: Nov 2008
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METALLlC BLUE
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posted
quote: IT is interesting how many times i see a statement saying that the doctor looking into this says one drug or another is seemingly being what it is best responding to///??
Yet that is not what I am told or treated with by him.
That is quite curious..
Yeah, it's odd. He seems to have a wide variety of treatments. Different patients have been reporting the Clindamycin routine, but I've noted the changes as well.
What is he currently doing with you right now? You can PM if you wish, also, do you like the care he's providing?
-------------------- 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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Member # 8797
posted
Hi Turbo, we have been to this doc for the past three years. My daughter came to his office nearly 100 pounds heavier (gained in four months), same symptoms as you, but absolutely non functioning. (Edited to say---she has since lost 100 pounds during treatment)
She is now taking college classes, her ANA is now negative, and her band #30 is now negative. Band #41 is still positive.
She's come a long way, but she has a ways to go.
You can private message me if you want to discuss it more.
Kelmo
[ 02-28-2009, 09:22 AM: Message edited by: kelmo ]
Posts: 2903 | From AZ | Registered: Feb 2006
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quote:He's finding something, and we know it's a bacterium -- not artifact as some suggest, given testing has been done demonstrating it is in-fact responsive to antibiotics in vitro.
If what Dr. Fry is seeing is the same as what Clongen is seeing and testing, than the assertion that it is a bacteria is in question. Clongen apparently could not get universal bacterial primers to amplify with PCR, which may mean BLO is a parasite, not bacteria.
The parasite possibility meshes with the fact that Bactrim, clindamycin and macrolides seem to help while beta lactam abx do not. These agents are used to treat various parasites - malaria, babesia, cryptosporidia and toxoplasma. Where floroquinolones like Levaquin and Cipro fall into the equation is unsure - I have not run across any info regarding parasite treatment with those agents.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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seekhelp
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posted
Generally, is Clindamycin a more effective anti-parasitic medication thanZithromax, Omnicef, Ceftin, and Biaxin? I'm wondering about something based on a suspicion I'm having about my issues.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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METALLlC BLUE
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posted
Unless Dr. Fry is sending over samples of the same blood he's used to do a smear -- finding what he's found, and having Clongen perform the same testing themselves using their own methods, as well as repeating Dr. Fry's methods then the validity isn't there.
Dr. Fry isn't --as far as I know-- suggesting that what he's seeing is BLO, or the cause of the collective symptoms being seen by Dr. Burrascano. It's possible, but he hasn't -- to my knowledge made any such claim. If anyone has heard differently feel free to let me know.
I called their lab and spoke to the lab manager for about 45 minutes one day. Here is what I recorded from our conversation. I tried as hard as possible to record direct quotes and remain objective in recording.
11:42 AM 8/21/2008 - Called Fry Labs @ 1-866-927-8075: I talked to John at Fry Labs, the laboratory manager for production. He said he dose work directly on the microscopes performing testing and viewing smears as well.
He asked me for my full name: Michael _______ , and asked who my doctor was. I told him Sheryl Dederian. I told him it wasn't an LLMD. I told him that Derderians office shredded the original gloss copy that you sent them, and they gave me a poor quality paper copy. I find that inadequate given what were trying to discover here.
He said he could send me the original photos I requested but that they would have to be sent to my doctor. He said he would post a note on it to not shred it and to give it to the patient.
I asked John some questions about what they're seeing here on this smears at Fry Labs. The Hemobartonella, and Mycoplasma. Are they seeing a new genus, a new species, what -- are these bacterial infections exchanging DNA, creating a "new" pathogen that "is" Bartonella and Mycoplasma in one, thus suiting both?
He said he didn't know. I asked him if genetic testing with DNA PCR was being performed, if they had preliminary data regarding these apparent "mycoplasma infections."
John warned me that he could not tell me certain things, that the public was not permitted to know, as they do know things, but they don't want to mislead anyone until they are absolutely sure. He then told me they had a PH.D. Molecular Microbiologist doing that primary work. John told me he could not offer me any information on diagnostics, but did tell me what they are seeing is legit, not artifact, that they're seeing this in a large portion of tick-born illness cases -- that it is statistically significant compared to controls."
They specialize in more than tick-borne disease at the laboratory, so this seems to be significant in John's opinion. They aren't sure whether this is an entirely new discovery conclusively.
I told John that I was well aware that the public is not seeing significant research on this, that although people claim to be getting the work done, actual patients are wandering left and right trying new treatments that simply do not work and speculating blindly with circumstantial evidence.
I told him, whatever is wrong with me, is clearly bacterial, that whatever they're seeing on this is possibly one of the sources of my poor health. I'm determined to know, not only what this is, but what is causing other patients to be ill as well. I told him I could not tolerate this any longer. Advocacy (on this specific issue) is not the answer, the answer is under the microscope.
John seemed interested and wanted to know more. I indicated that I'd had thorough testing for Lyme Disease done, and that after 72 months of treatment, the testing is strongly positive. The symptoms seem to be out of proportion however.
Lyme Disease causes one set of systemic symptoms, while other infections are possibly at work causing a more concentrated form of illness: psychiatric, neurological & cognitive, and digestive symptoms and rashes of unknown etiology.
Note for Lymenet Rearders: I was correct, later in early January of 2009, my testing came back positive for a variety of things. Rocky Mountain spotted Fever, Stachybotrys Chartarum, prior exposure to Mycoplasma Pneumonia, and Chlamydia Pneumonia (these seemed to be under control or resolved), as well as a number of abnormal findings.
Bartonella and Babesis were diagnosed. I am responding to treatment for Babesia. There is no "conclusive" proof of this infection. A "possibly" active Epstein Bar Virus infection was also present as well as a variety of other things.
Continuing the phone call:
John asked me if I'd ever been well, and I told him no. I told him I've been infected for 22 years, and that I'm 30 years old. John was shocked and asked me "Had you pursued the other diagnosis prior to this Chronic Lyme Disease and possible tick-born illness conclusion, such as MS, ALS etc."
His question was a sincere desire to know what directions I was pulled in, rather than a suggestion that it "should have been done." I said, yes -- they were considerations, but never significant in my book given the systemic nature of whatever was wrong. I told him I reviewed the autoimmune conditions at length, that I'd studied everything I could -- given my knowledge that it was an inflammatory condition. That was the only objective symptom that clearly was hitting the entire body.
So whenever I would come to (Defined diseases) conditions that didn't have a systemic nature, I reviewed it, but did not stay with it long, hence why it took me a lot longer to narrow down the possibility of multiple infections.
John was further intrigued and found it quite logical to pursue that path. I then continued speaking: "It was never even mentioned at any point, with over 150 doctors, that Lyme Disease or tick-born infection might be a consideration.
It wasn't until I came across some data regarding distribution of illness, and considered my travels and having talked broadly about my illness publicly, that the idea of Lyme Disease came up." I gave him some further information about the incorrect information being put forth by some physicians.
I talked to him about the Brain SPECT scans, that I had done scans at different facilities, and even in spite of that, having 50-70% Hypoperfusion, including sub cortical, prefrontal, frontal, parietal, and temporal lobe impairment, physicians were still telling me that it wasn't "my test."
They claimed that it was an error, or perhaps a mix up, that I'd received another patients results. I repeated "But I had them done at different facilities!" John was shocked, and I said "John, I don't know what is going on with these diseases, but something just isn't right. The way people are responding, is inappropriate, almost....insane.
It's fishy." John had no idea this was going on to this degree, and asked who it was that reviewed my testing. He said "Was this a neurologist?" I said it was both. It was an Infectious Disease physician in Springfield MA, as well as a Neurologist.
I told him that they consulted each other, and both agreed with the opinion of it being incorrect data, and or mix ups. I told them that was insane. They told me "There is nothing wrong with you, you don't have Lyme Disease."
I told John that I've begun experimenting with various drugs on myself, and while it's unscientific and circumstantial, the collective data that I do have, though indicates that another infection is present. It is clear that I still have Lyme Disease, after 72 months of antibiotics, I have a CD57 of 85, positive IgM testing for borrelia burgdorferi, B31, and now Fry Labs suggestive findings, as well as the symptom patterns and the response to antibiotics.
I told John how I was hospitalized with sepsis, ironically by the same LLMD who doesn't believe in chronic co-infections. John was shocked and said "That is absolutely strange." -- I said "Bactrim and Levaquin" were given to me to treat the sepsis, but when I came out of the hospital, and after 2 weeks of those antibiotics oral, suddenly 50% of my symptoms were gone.
I wasn't "well" but there were substantial improvements. Of course I then relapsed. I said "Is this Mycoplasma, Bartonella, BLO as Burrascano states?" John said "I personally just don't know definitively, but you're on to something."
John asked me what my background is, and I said I'm disabled. He asked if I attended college, and I stated that I had not, given the limitation. He seemed shocked. I told him I managed to get through high school but only barely.
Between playing sports (Which I was forced to do) and studying 10 hours a day, I couldn't function. I wasn't performing well, but It was passable. At the time, I had to do whatever it took. Now I know better. I asked John what type of Microscopes they used, and he didn't get around to telling me, but I asked if he had access to dark field, and he said yes.
I told him I'm interested in purchasing one, but that I have no formal training in pathology, microbiology, or otherwise. I told him I want to setup a station in my kitchen, with a fridge, culture unit, table, scope and whatever other necessary parts I need and begin working on these problems.
John thought this was an awesome idea and said "Ok ok, yeah, that is great, that's the way to do it." I told him I figured between having the supplies, experimenting, and reading the prior journals and other research that is available I think it's possible that I can play a role in finding a solution. Since when do I need a formal education?
Most physicians were untrained laymen, and some of the biggest discoveries in history were found by people like me, who had only a drive to answer a question. For a couple dollars I can pick up library books on the subjects at hand, I could possibly figure it out. John told me he wanted to talk to me about this further, but that he'd just arrived at work, it was 8 a.m. and he said he'd call me in 30 mins after handling some initial work. Once finished he wants to go over all of this further.
1:00 PM 8/21/2008 - Called Fry Labs @ 480-292-8560 to speak with John ____ . John called while my girlfriend was on a telephone call and so I called him back. Immediately he began telling me about microscopes. He told me that Nova Diagnostics representatives had just arrived in the laboratory recently.
They were mentioning they had a new line of microscopes, light source, they use LED circuits, rather than traditional gas, bulbs or halogen. He said these are far less expensive and equally if not better than prior technology.
Innovadx.com, is the website. He told me to go through their pricing and look for Flo LED. He told me they use other parts, but he didn't know which specifically, but he said Nova could give me those contacts. John continued speaking and said that he was new to the field of tick-born illness and infectious diseases of this kind.
He said he hadn't studied autoimmune conditions much at all but that he'd been in the field of microbiology for many years. He said that he knew nearly nothing about the clinical presentation of these conditions, and that he was super-excited to hear about my case, because now he has more information about what he's actually doing, what it's affecting in a life.
He told me he'd tell me anything I want to know if I have specific questions about the tools needed to do the work. I told him "This field is going to explode, it's going to change a lot about what we know about medicine in general, and I'm thrilled that he is doing this." John took down my e-mail address, and told me he could connect me with more information than I'd want to know about the technology.
I told John "You know, the fact that you're coming into this so new allows you to see this with a much cleaner perspective, you'll be able to avoid the dogma that might hinder your ability to proceed into newer territory."
John agreed and said "This is the first time I've spoken to a patient, who has both the motivation and the capacity to do what is necessary. He told me he'd spoken to many patients, and of course they had many questions, but while the motivation was there, most were far too disabled cognitively to handle the work. He said "I'm thrilled, because this is what is needed to go further.
I told him -- feeling embarrassed -- that while I had the capability and drive, it would still take a long time, because I still have many cognitive deficits. He said "Really?" I then explained further. "John, the studying that you do and the time frame it takes you to absorb and encode information is increased by probably more than ten times for me to even process an equal amount of work, and even then, if fortunate, I may literally learn only 35% of it.
He said "If you persist, in time though, you could do it." I said "Yes, I think that's possible." John then said that he looked forward to working with me, told me he'd love to be my primary source for data if I wanted. I gave him my e-mail: [email protected] and then he had to head out for work.
------------Conversation Ended-----------
I have never posted this before. I did not in-fact take up the cause to find out what they were seeing. Financially nor physically am I capable of performing the work. It would simply take too long in my opinion and there are other people far more capable at this time working on it. I've focused on other less demanding projects.
In any respect, these were the phone calls I shared with Fry Laboratories.
-------------------- 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
Any one who sees Dr. Fry is welcome to tell me their experiences working with him. I have almost no patient reports on him, so when people ask for his information, I don't have much to give them besides saying "Hey he runs Fry Labs." I mean, I know he's a good doctor from "vague" reports, but I have no actual accounts of the appointments, tests he runs, meds he uses, or basically anything that a new patient might want to know. I dont' even know what it costs to see him.
posted
seekhelp, with respect to clindamycin vs. azithromycin and clarithromycin, it seems to depend on the parasite. I have not run across anything that indicates that cephalosporins like cefdinir or cefuroxime have any effect on parasites. Clindamycin and macrolides seem to have a strong effect on babesia, they are used in treatment recommendations. They are also used for plasmodium (malaria), but combined with a quicker acting drug like artemisinin or quinine since the action is kind of slow. They are sometimes used for toxoplasma also, but folate synthesis inhibitors like Bactrim or Daraprim and sulfadiazine are usually preferred.
MB, you are absolutely correct about the information from Fry and Clongen labs. They may or may not be seeing the same thing, or one or both labs may be seeing more than one organism. Until some lab gets at least a partial RNA or DNA sequence on the organism(s) we are in the dark for the most part. This does not seem to be a high priority for any lab, which I can understand - this type of work is probably not very profitable for a commercial lab.
I have tried to collect information from various sources, most of it indirect and incomplete. I made some assumptions (some of which were most likely incorrect) and did some research and still came up with almost nothing, just a bunch of hand waving really.
The only thing I would suggest is that anybody with consistent BLO labs contact Palo Alto medical foundation regarding testing for Toxoplasma. If that is confirmed, then you can put together a treatment plan, if it is ruled out that is one less thing to be concerned with I guess.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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posted
Hi everyone, the BLO is real. The lab cannot really give out any information until they are absolutely certain they know what it is and that takes time. Unfortunately,that is how science works. This kind of work is tedious, time consuming and very expensive. This is not work for a commercial lab. The current drug combination I believe the doctor's office prefers is Biaxin and Plaquenil. I do not believe this is a bacteria. I believe the office takes insurance. I hope this helps. I just started the treatment and not everyday. I definitely am herxing.
Posts: 7 | From Arizona | Registered: Feb 2009
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If it is not a bacteria then why are you taking antibiotics and not antiparasite meds?
Just my opinion.
Hubby has positive tests from both Fry (March and September 2007) and from Clongen (November 2008).
I personally think it is a bacteria based on hubby's response to meds. Think it is also probable that some sort of biofilm is involved.
Whatever it is I am convinced it needs iron. Lactoferrin has been a big help for hubby.
As far as Bactrim -- hubby has been on that for a year and it hasn't seemed to do much.
It is just so frustrating to not have more info because it seems to me like whatever the pathogen is that it develops antibiotic resistance and I am running out of things to try hubby on until we have more answers.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kelmo
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Member # 8797
posted
<Until some lab gets at least a partial RNA or DNA sequence on the organism.....does not seem to be a high priority for any lab, which I can understand - this type of work is probably not very profitable for a commercial lab.>
Fry labs DOES have a high priority on DNA and PCR testing. When Dr. Fry talks to me about it, he says that the "DNA is consistent", especialy with respect to Babesia. He said that they have a 100% identification rate with Babesia now. Lyme doesn't phase him, as he says he can get rid of that in a year.
It's this organism that tenaciously stays and causes the chronic symptoms.
I have been in his lab. It's a small office, and the lab is in a room about as big as a bathroom. There is a chest freezer, microsopes, one hooked up to a computer monitor, a PCR machine. That's all I can remember.
MB, my daughter's first visit with Fry was the last week of 2005. She had been sick, and getting worse over the course of two years. Our first visit, he described her symptoms and we cried. After dozens of doctors, and finally being told it was FMS, or psychological, we felt hope. He told us then that he didn't think Lyme was involved but it was part of the tick borne illness, most likely bartonella.
He told us that visit that over the past nine years he had seen so many people with chronic illness that, as a microbiologist, he was determined to find the root cause. Almost all of his autistic patients had this organism attached to their red blood cells. He did a presentation at our local support group and showed us those slides...unbelievable.
This isn't a bandwagon, flybynight opportunist. He's been quietly working on this for a decade. Clongen jumped on it after they met with Fry at a conference.
I get angry when I see accusations fly about him being a liar and deceiving folks about their blood smears. He hasn't done that. It's just that as he begins to peel away another skin of this onion, he is finding something different than what he thought. OR, it's something he didn't expect.
As he acquires top of the line equipment, he is able to more accurately identify the elusive organism that he's been searching for.
This is a small office and the money is coming from his pocket. The profits from the blood tests have meant he can hire microbiologists to help him in his work, get new equipment, get it genetically mapped (not cheap).
Thank you, Metallic, for your objective report. We are longtime patients who have been walking this journey with Dr. Fry. My daughter has come a long way, but we are not finished.
I think she stands a chance for a cure in her lifetime because of the work that he is doing.
Posts: 2903 | From AZ | Registered: Feb 2006
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kelmo
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posted
Lymestop, people have called his office and spoken to him, his lab techs, etc. to ask questions. But, I wonder if their motives were to trip him up, or to really understand.
The reports back to the board have always had a sinister slant, like everyone had been taken for a ride, or been robbed.
Or, if they didn't get the concrete answer they were expecting they saw him as being evasive. He's a scientist, and they are very cautious about giving a concrete answer until they have completed due diligence.
The first part of this process is to identify the organism. The second is to replicate it (they are finding this very difficult without using a live specimen), then try different available treatments to stop it's growth.
We have some very intelligent people on this board. So, I hope they remember the scientific method and the time it takes to complete.
As for fundraisers. I don't know what to tell you. I am afraid that people will invest money then expect more out of him in a shorter amount of time so they can see their investment come to fruition. This is a lot of pressure.
When I first joined this board, there was a big fundraising drive for the Columbia Lyme Research Institute headed up by Dr. Fallon.
So far, one vague study has been done. I, for one, am glad I didn't send money.
The best investment has been Under Our Skin. The new movie, Lymelife may also bring attention to our plight.
So, pray that Fry gets a research grant. Do you think under the new administration that money will get to this area? We can only hope and write.
But, no one stands to gain big bucks in return. THAT'S the dilemma.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Just read a new post by LymeMD. Apparently Clongen hasn't totally given up -- think they are investigating the possibility the "mystery bug" may be a parasite rather than a bacteria.
The title of the post includes the word "LymeNet". The post previous to that also has some info in the comments section.
Personally I am very frustrated by the entire process. I think I would be a little less frustrated if I knew if the 2 labs were even seeing the same pathogen. Hubby is in a rather unique position since he has positive results from both labs. However, since I can't get current LLMD to prescribe the meds I would like to try I am stuck experimenting with herbs.
Hubby is doing better but I don't know how much that is from treatment and how much from increased symptom control meds. I am very concerned about the hydrocortisone hubby has been on since October, 2008. And right now there doesn't seem to even be a plan to get him off that med.
Hubby has always been more pessimistic than me and sometimes that wears me down as well. The big dilemma is do I treat more agressively or just stick with what I am doing or change to something totally different? I just feel like hubby is a ticking time bomb and the bacteria or parasite is developing resistance to all the antibiotics and herbs he is currently doing. I am pretty sure they are only bacteriostatic and not bacteriocidal.
I reread the journal article "Natural History of Bartonella Infections" and am more confused than ever.
"With all other known bacteria, prolonged bacteremia is associated with signs of septicemia in the host. Bartonella bacteremias in the natural hosts, however, can be asymptomatic. This is contrary to our present understanding of bacteremia and goes against the idea originated by Koch that bacteria do not occur in the blood of healthy animals or humans."
Of course we all know that those who have this mystery bug are far from asymptomatic. But the big mystery from a medical perspective is why does the immune system not respond to this mystery bacteria. Bartonella is supposedly the only bacteria that has been found in the bloodstream that does not cause sepsis or blood poisoning with severe fevers and other symptoms.
Or if it is a parasite then I still don't understand why there is no immune response?
It just seems like there must be something extremely unique about this bacteria or parasite whichever it is.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kelmo
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posted
<mystery bug" may be a parasite rather than a bacteria>
Fry has been saying this for months. That's why he is putting everyone on anti-malarials.
Posts: 2903 | From AZ | Registered: Feb 2006
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METALLlC BLUE
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posted
I'm shocked that it could be a parasite, after all this time they were so certain it was a bacterium. It goes to show how even the underpinnings and most basic aspects of this work are evolving.
-------------------- 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
Maybe my son's high IgE levels are due to the BLO(if it is a parasite). High IgE levels are frequently seen with parasites. Normal range is 0-390 at the lab we use. His number is about 3500.
HMMMM.
I pray Fry figures this out soon!
Posts: 236 | From Illinois | Registered: Feb 2009
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I must have missed something along the way. Last I heard Dr F was saying that what he was seeing was a betaproteobacteria. So are you saying he has changed his mind about that?
I had read that some of his patients were on either Plaquenil or Mepron, but I thought that was either because he thought the bacteria had a biofilm or because so many different antibiotics hadn't worked on this bacteria.
Please clarify -- is he now saying what was originally labeled as Bartonella and then called Haemobartonella and more recently betaproteobacteria is now considered to be a blood borne parasite similar to malaria or babesia?
I don't want to seem like I am beating a dead horse, but this is very very important to those of us who are not patients of Dr F and whose docs still think BLO should be treated with bartonella drugs such as Rifampin and Levaquin etc.
As soon as Dr F has a PCR test for this bacteria or parasite or whatever it turns out to be hubby will be first in line to be retested.
I know hubby's LLMD sends many patients blood to Dr F to be tested. At his last appointment the doc did not have any new info from Dr F regarding treatment. It seems to me like it would be very beneficial if Dr F has changed his mind about what he is seeing if he could send a brief statement to the docs who use his services stating that he believes he is seeing a parasite instead of a bacteria. It just seems to me that the lab needs to communciate with the LLMD's and that the patients shouldn't need to be the go -betweens.
Thanks.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Bea, I'll see Dr. Fry on Wednesday. I got this latest information from someone who saw him this past week. So, I'm getting it second hand.
Posts: 2903 | From AZ | Registered: Feb 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Kelmo, let me know too please?
-------------------- 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
I believe it is important to realize that identifying this bug is not easy, and in my opinion, not possible for a lab of Fry�s size.What is needed is that the doctors and laboratories that have observed this bug in their patients customers report it to the CDC.I believe they have the resources to solve the mystery very quickly.Those of you who agree should talk to your LLMD- lab about that.
P.S. I hope this point of view is not seen as an attack on Frylabs.That is beside the point.The point has to do with size and resources. I admit to be critical of Fry,though, and also the strange rumors and info that flow from patients with him. Also, it is important to remember that the kind of blood-smears that Frylabs makes may be very helpful in some respects in case of a positive finding.However,they do NOT rule out the prescence of many pathogenes. ( Very much depends on technical choices such as,are they wet mounts/stain used/Buffy-coat-tecnique/time spent examining the smears etc etc Gale
[ 03-04-2009, 03:48 PM: Message edited by: galehane ]
Posts: 268 | From europe | Registered: May 2008
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jamescase20
Unregistered
posted
ITs not a mystery bug...its bart...advanced strains...they been around for a while now...theres 26 discovered already. There "treatment resistent" or "drug resistent". I had a friend who clearly infected my entire family with carrions disese he called it from mexico. This was around 1985. I was too stupid to realize it then. I was seen by a Ifectious disease doctor in 1989 and HE KNEW his stuff THEN. What where the questions? Dogs? Cats? Fleas? Flies? Bugs? I said, Yeah, he said.. yeah. He went on to talk about lyme disease...and tick diseases. And fleas...etc. in 1989 I remind you! This line of questioning hits home here I know!
Gentimicin appears to kill all barts..but its very harsh. Olive leaf seems to work in very high doses. Thats all i got folks. As I sit here, herxing for about 1 yr 4 months with lyme bart and babs playing all sorts of mutent tricks to evade my system and any drug I throw at them. Its working no dought...but this sucks...and I WISH I could be put into a coma until I feel better!
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jamescase20
Unregistered
posted
This bart is resistent to DOXY and minocin clearly, all pennicllins EXCEPT for augmentin, this drug def appears to STILL help...its the clavic acid in it thats working. Rifipin MAY help but not alone it wont...trust me I've tried.
I cant believe it hardly but I find if I take 20 olive leaf pills at once, I herx HARD, so harder, no question its working. And the abx DONT. Gentimicin seems to knock it down fast....though, I was impressed with that. Read pubmed about gentimicin for bart.
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jamescase20
Unregistered
posted
Its bart...I cant see how it cant be...its black dots stuck on the cells I can see them. Its just drug resistent bart its from mexico.
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jamescase20
Unregistered
posted
ITS ADVANCED CARRIONS DISEASE is what this is.
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jamescase20
Unregistered
posted
CDC has resouces? Are you kidding? There underfunded to the bone.
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posted
Has anyone actually done a course of IV Gentimicin for Bart? I understand it has a lot toxicity issues with it so it has to be done in the Doctors office.
I am also positive for Bart species Hens and quin so its highly possible I also carry other strains such as the one you speak of.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Thanks Tosho. Did not know that. One thing is for sure is that Levaquin has worked best for me so far. I did 5 months already at 500 mg daily. I am going back on it in 2 weeks. Maybe at a higher dose this time. Have you tried it yet?
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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jamescase20
Unregistered
posted
I did IM injections of gentimicin at home from india RX. It totally works man. BUT, since I have a microscope I could SEE what it was doing, honestly, I felt terrible!
Its a paradoxical disease...you FEEL worse before you feel better, you all in long term tx know that!
The black dots on my red cells would dimminish and fade in color and disappear. BUT, they would come back within days of stopping gentimcin.
I now figure 2 weeks of gent...THEN I moved to rimpicin and massive olive leaf 20pills a day. Mullein, massive 20 pills a day dose. HBOT, mild around 3-4PSI at LEAST 1 hour a day. My blood is WAY better now...its the hbot is the reason...the bart AND lyme is in retreat clearly now.
I am on other drugs too but not getting into that...on 2 vet drugs too. Frontline plus, and revoltion, around 3-5X normal dose, and dosing every 2-3 weeks instead of every 30 days.
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jamescase20
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posted
But, I feel like I am not far from death either...BUT, I know from experience if I back off now...I will just have to start all over...I am not stopping tx no way no matter what.
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
James please be careful!
Posts: 3528 | From US | Registered: Apr 2007
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tickbattler
Unregistered
posted
Jamescase - Your info is always very interesting and helpful.
My husband has a 1:64 igG for bart quintana and also has the Fry smear showing his cells with tiny specs of something INSIDE his cells. Unlike the rest of my family, who have the black dots attached to the OUTSIDE of our cells, my husband has none apparently on the outside, at least that's the way the photo appears.
We can confirm that doxy did nothing for the bart (or whatever it is), as he started backsliding after two months of it with omnicef. However, now that he is on 750 mg of levaquin again he is starting to feel a bit better.
I didn't see where you mention anything about levaquin...have you tried it personally and what does it show under the microscope?
Also, I'm curious about Bactrim, as my three very young children are all on it for suspected bart (black dots on the outside of the cells). Have you tested that?
Also, can you explain a bit more about how you test under the scope...do you try a drug for awhile and then look at your blood under the scope or it there a way to actually put the drug on the bacteria and watch it die under the scope? Please forgive my ignorance about this!
posted
HBOT speeds up the detox channels in the body, THATS what will LOWER the herxing feelings. In fact, since I have a mild HBOT here, if I use it for about 8 hours non stop the bart headaches lower.
Leaquine does seem to kill bart, but it takes forever!
I stand by gentimicin followed by something like rifapinicin or the like. I had the purple node form of bart, so mine maybe true carrions disease where others are dealing with other strains. It should be expected it would come right back. Singular could kill these invaders I know other off label use drugs seem too. I have not explored much of them. Tricylclic anti depressants are rumored to kill some bug forget which. Viagra another bug killer rumor..forgot which. Its known that carrions disease has a drug resistent strain and its known a LONG time, that one carrions strain is killed by doxy that the other one only chorelpoeil (no usa approval) drug seems to rid the other strain, now, there finding out this reistent carrions is reisting chorelpenil too. I clearly see blood improvemnt from massive olive leaf, neomycin rubbed on skin (bart loves cooler areas of body BTW) rimapin, mullein, um, and HBOT to try to decouglate blood, this is clearly working. Other tXing helped little. While gentimicin is great...you cant take it for more then 2 weeks and so it would just return, BUT, gentimicin no question would knock down at least my bart faster then anything I have tried.
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jamescase20
Unregistered
posted
Bart DOES live inside the red cells but you can see the black dots on the outside...these are like there way to hold themsevles down. They suck the cell dry until it dyes and then move on to another healthy cell.
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jamescase20
Unregistered
posted
Other strains of bart, I have little knowledge of. Read about them online I guess.
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jamescase20
Unregistered
posted
To those concerned about my health, thank you, but I am killing and simply herxing right now...and its starting to lift again finally so seems the worst is ending. My blood finally is de=coatulating again so...I think I am finally on a new roll now. Thanks again.
w/o heprin (cant afford it) and if I didnt have the HBOT, surely I would clearly now I see have gone nowhere fast.
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