Clarissa
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posted
Could someone please explain to me in layman terms what the differences are between "traditional" Bartonella vrs. Dr. B's reference to BLO in his video? I'm still not grasping it...
I'm talking to my LLMD tomorrow and I'd like to inquire and not sound like a complete ignoramus.
I'm still not sure "what" kind of Bart I have as he referred to it as a rare form.
posted
My understanding is that some organisms that they previously thought were bartonella, might not actually be bartonella, but are "bartonella-like organisms".
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Clarissa
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posted
Thanks, sixgoofykids. So, to my understanding, these BLO "organisms" can only be killed by Levaquin, whereas "normal" Bartonella can be killed with combos of Rifampin with another abx or Cipro.
So if you have this BLO, Levaquin is the only way to go?
posted
That's my understanding .... though I don't know that Cipro won't work, it's just not as strong.
Levaquin worked absolute miracles for me! I apparently had those BLO's because 12 weeks of Levaquin and I was just as Dr. B described, completely well except for some tired adrenal glands and low thyroid.
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Clarissa
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posted
Good to know! I will definitely address this with my LLMD tomorrow.
Thanks, again and so happy for your healthy recovery! Good for you
posted
Can Fry or any other lab differentiate between bart and BLOs? How can one possibly tell which one of these is the problem? I had a terrific response to Cipro but had to quit due to tendon problems. Now I'm on Rifampin and am wondering if I'm wasting my time?
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Clarissa
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posted
Good question...I was wondering that myself as I was diagnosed with Bart through Fry. Howe can they differentiate on the tests?
Maybe it's a crap shoot until you take the meds and see what works and doesn't work. (sigh).
Clarissa
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posted
So I guess I have to trust my LLMD, huh?
I'll inquire but not "interrogate", plus, after almost 4 mos on Zith & Rifampin, I AM getting better so he's probably treating the correct form of Bart.
It's just all so confusing and the ambiguity could cause me to end up in a straight jacket.
Cass A
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posted
It's my understanding that recognized Bartonella species are limited to a few, and many tests look for only a couple of them.
However, on blood slides, BLOs can show up visually that are not in the limited number of species that are "official" or that the tests will recognize. This is one reason that Fry Labs do the blood smear, as I understand it.
Sorry, I don't have a reference to cite for this.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Cass A
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posted
OK--Here's a citation, from a recent post:
"BARTONELLA-LIKE ORGANISMS by Joseph Burrascano It has been said that Bartonella is the most common of all tick-borne pathogens.
"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."
Hope this helps sort things out!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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adamm
Unregistered
posted
Well, apparently those with BLOs can test positive for B. Henselae;
I did, and Rifampin didn't do a thing for me.
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posted
Don't know whether this will help, Clarissa, but here is a portion of text from the Bartonella/Babesia Symptom Questionnaire that I posted. I got this info from an LLMD. And I've noticed just recently that it is also published in the new book "Lyme Disease Solution," by Dr. Singleton.
"Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families."
Fuzzy
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Keebler
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Member # 12673
posted
-
Clarissa - very well-put: '. . . I'll inquire but not "interrogate" . . . '
After years of very bad, ignorant doctors, it took me years to get my tone and attitude to make that subtle shift to give any new doctor a chance.
Clarissa
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posted
Thank you all for your very thoughtful feedback!
I did inquire about this issue "gently" and although his terminogy was a little above my head, his overall message was: try Zith & Rifampin first, if no response or signs of improvement, then move onto Levaquin.
I felt that to be a diplomatic answer plus, after 4 mos on Zith & Rifampin, I do see improvements. I actually went to the gym on Sat & Sun (sorry if I already mentioned this) and I seem more even-tempered and the daily uncontrollable sobbing stopped a couple weeks ago.
So, there you have it, only time will tell!
Thanks again, my friends.
Thanks again for you support, wisdom and kindness.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
yes, keep us posted!
Funny, I've been wondering if I'm really getting bart/BLO/whatever I have. I've been on Rifampin combo for 8 months and while I've improved dramatically, I think "whatever it is" is still there. Not sure how much longer my LLMD will keep me on Rifampin. I'm terrified of trying Levaquin though, and he's fully aware of that. But what if Rifampin only suppresses, doesn't kill? Did he talk about that?
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adamm
Unregistered
posted
Actually, someone posted a write-up of a study awhile ago in which
it was demonstrated that there are no antibiotics that actually
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
CD57: I didn't ask him if Rifampin only suppresses, rather than "cures.". Sorry!
Put it this way, when I asked him the question re: Bart/Blo/Levaquin, he sighed, NOT arrogantly but patiently and said, "do you know how little and how few people even understand Bartonella at this point?"
He's in the midst of researching and writing a book and he seems very confident and has the courage of his convictions. Again, he was NOT patronizing or arrogant, just confident with his choice of meds and very pleased with my progress.
Example of controversy: Many people on the board (and LLMD's) believe that if you have IV Rocephin then it MUST be followed by cyst busters or you will relapse. My LLMD at the time decided not to do cyst busters due to my pre-disposition to depression.
I then went onto work for 3 years in Advertising. I only fell ill due to the discovery of Bart and biotoxin gene.
My most recent Igenex test showed only a band 39 which is a weak positive for Lyme. Compared to my results 5 years ago, this is practically nothing "Lyme-wise". I do not consider this a Lyme relapse.
I draw this parallel because as I've said over and over, there is no ONE cookie cutter answer for one patient. You have to trust your LLMD, your gut instinct and try and do less compare and contrasting.
I love ths board because it's given me so much information, friendly advice and support but I think we must all take each other's info with a grain of salt because we all have unique constitutions, genetics and environmental factors.
Furthermore, there is still so much unknown with this Bart/Blo issue. And the whole biotoxin gene...that wasn't even in my radar when I was treated for Lyme.
Things are advancing at a quick pace and, unfortunately, in some ways, we are guinea pigs and have to roll with the punches.
The good news is, at least we have a diagnoses, doctors trying their best to help us and an awareness of the demon that has been haunting a lot of us most of our lives.
A religious moment: At some point we must surrender to God because we can only know and do so much. If I do not do that, my recovering Bart brain will take me backwards...and I only want to look to the future.
Off the soapbox now. Hope some of you can find s nugget of peace in what I've been thinking.
CD57
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Member # 11749
posted
Nice post ! Your doc sounds great: "he sighed, not arrogantly, but patiently....". And yes, if you're seeing improvements (albeit slowly) sounds like you're on the right track. It took me awhile too.
The other reason my LLMD said a Rifampin combo is good is because it works on mycoplasmas. I tested + for the pneumoniae kind, which may or may not have been transmitted via tick (you can get this one from people coughing on you).
I think if my doc wants me to do a round of a flouroquinolone, we'll try Avelox.
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