I just spoke at lenght with someone at Galaxy Diagnostics in NC. For those not in the know, A veterinarian, Dr. Ed Breitschwerdt has done some amazing work, identifying bartonella in animals with a new patented test. Dr. Breitschwerdt is also an adjunct Professor of Infectious Disease at Duke University Medical School.
The better news is that there have been some research trials that have yielded results beyond expectation in humans. Testing and then treatment has been done, specifically on individuals who have been dx'ed with MS.. Many tested have been found to have bartonella and have responded beyond expectations with treatment.
The testing is two tiered. First by PCR and then culture grown to overcome sample bias. Then it will be DNA sequenced. There are over 22 named species of Bartonellis and as many as 30 species, some yet unnamed.
Galaxy is now working on antibiotic resistance studies. Their problem is funding and Grants have been applied for both with the MS Society and NIH.
They are working very hard at the present time to get the test out commercially. They never expected the huge results that they have had in trials.
The worse case that they have seen was a woman who was infected with Bartonella Melonagris (sp). contracted from a sheep. Bartonella has even been found in dolphins!
VALIDATION TESTING FOR HUMANS IS EXPECTED BY THIS FALL, CERTAINLY BY THE NEW YEAR!
This testing will be patient pay as the testing has not yet been FDA approved.
A very hopeful strand for all of us waiting for something definitive......
This is a very astounding finding, to say the least!
Can I have permission to copy your post for those who may be helped by this information?
Thank you.
Dan
Posted by feelfit (Member # 12770) on :
Yes, Dan, you may. I asked for permission from my source to post this info and was given the 'go ahead'.
Feelfit
Posted by djf2005 (Member # 11449) on :
This looks promising....
I am looking forward to the testing, but how will it change treatment options?
I just started Factiv, the latest greatest bart med, i'll try to keep you all posted.
best
derek
Posted by feelfit (Member # 12770) on :
They are testing fro antibiotic resistance. This is improtant and obviously will weed out ineffective tx.
Posted by Pinelady (Member # 18524) on :
Wow 7 days instead of weeks.
Posted by djf2005 (Member # 11449) on :
sounds good.
do you think they will have the capacity to test what strain we have as well as know what abx will work through abx challenges?
Posted by kitty9309 (Member # 19945) on :
The problem with antibiotics susceptibilty testing is that there are no NACCLS standards to allow the reporting of susceptibilities of Bartonella (and certain other bacteria).
And, they are not always seeing a correlation between the in vitro results and the in vivo success in eradicationg the infection.
Posted by seibertneurolyme (Member # 6416) on :
Sounds like they are making progress, but my concern is that the test is a PCR test. Those are so unreliable for Lyme(way too many false negatives). Does anyone know if they are any better for Bart? Most people can't afford to do 20 PCR tests to get a positive test!!!!!
Bea Seibert
Posted by Hoosiers51 (Member # 15759) on :
The good thing about the Bartonella henselae is that it has a short reproductive cycle, so it dies quickly and you don't have to wait months and months to see if the meds are working. (when you're infected, you will also get symptoms quickly)
If what you're taking is hitting Bartonella h. at least, you will notice a difference within the first month probably, unlike Lyme which can take longer to treat.
I wonder if that applies to most species of Bartonella. (keep in mind, BLO might not be bartonella), or just the classic Bartonella henselae.
For me, just trying meds has been helpful. Bactrim DS got has helped me tremendously with the "bartonella" symptoms. Rifampin, not so much.
With Bactrim, I knew after the first pill that it was doing something because I had an insane flare of symptoms. My symptoms were better within 6 weeks.
I'm now on a second round of it, and seeing even more progress.
I guess my point is that just experimenting with meds is not always a bad approach.
Posted by kitty9309 (Member # 19945) on :
Yes, I think these Bartonella's will require trying out different antibiotics in most cases.
It is also suggested that 2 agents known to hit Bart be used at the same time. Of course, we know that Rifampin should not be used alone as resistance will develop.
[ 10-01-2009, 04:44 PM: Message edited by: kitty9309 ]
Posted by feelfit (Member # 12770) on :
Thanks Kitty for supplying the additional information. So, your bart was DNA sequenced to come up with the species: B.Vinosonii berkoffii?
Are you having any success in eradicating this?
So glad that you have something to hang your hat on with that positive test.
I wish that my doctor had an in right now to test my blood.
Sorry, if I stepped on info that you had already posted Kitty, I sure must have missed it. It sounds like you have very good sources for your information. Thank you for sharing
Feelfit
Posted by kitty9309 (Member # 19945) on :
How did you find out this info? I know Galaxy has some research/news articles on it's website mentioning the research.
[ 10-01-2009, 04:45 PM: Message edited by: kitty9309 ]
Posted by feelfit (Member # 12770) on :
Kitty
Posted by Rivendell (Member # 19922) on :
Bart is also found in dolphins? I guess that it wouldn't be a good idea to eat tuna salad, then.
Posted by imagine2 (Member # 3136) on :
Kitty and feelfit, This is really great news. Can you tell us how much the tests cost for humans AND animals?
Posted by feelfit (Member # 12770) on :
I have no idea Imagine2. I have posted everything that I know about the test at this point. Maybe Kitty will have an idea.
Feelfit
Posted by radfaraf (Member # 11909) on :
quote:Originally posted by Hoosiers51: The good thing about the Bartonella henselae is that it has a short reproductive cycle, so it dies quickly and you don't have to wait months and months to see if the meds are working. (when you're infected, you will also get symptoms quickly)
Does anyone have any journal articles about the reproductive cycle of bartonella, I couldn't find any when I looked in the past. I am mostly interested in knowing if say if your only problem was bartonella, could you treat it through pulsing, or would the bacteria come back so fast that it would never work?
Edit: Notice this in the website " As Bartonella species have a dividing time of approximately 24 hours, a diagnostic sample that contains one bacteria will contain only 2 after 24 hours, 4 after 48 hours, 8 after 72 hours, etc"
Doesn't 24 hours for bacterica qualify as a long reproductive cycle?
Posted by cantgiveupyet (Member # 8165) on :
Great info Feelfit &Kitty
Kitty- I too had missed you original post.
Posted by Hoosiers51 (Member # 15759) on :
To me, 24 hours seems long, but I could be wrong.
"The" Dr. B says that you know it's Bartonella, if you quickly relapse after withdrawing antibiotics. That is in his guidelines.
If you slowly relapse, it's Lyme.
With Bart, you can relapse after like 3-4 days of no meds. So I'm not sure about the pulsing strategy, if we are talking about regular Bartonella and not BLO, which is more of a mystery.
I had an intense fever while one of my bites was still attached to my scalp. The fever was over 102, THEN we found the tick. So that gives you an idea of how capable it is of multiplying quickly. I can't imagine the tick would have been on me for more than 48 hours.
And my LLMD told me that the fever would have had to be from Bart, because Lyme wouldn't have been able to cause a fever that quickly.
That's pretty much the extent of what I know.
I tested positive for Bartonella henselae on a titer test through Quest.
And I responded within hours of taking Bactrim, so it came fast, and started dying fast. And 20 years went by between that tick bite and taking the Bactrim DS, so it isn't like the infection was new when I treated it.
BLO....that's a whole different story. So who knows.
Posted by radfaraf (Member # 11909) on :
I am Bartonella henselae positive too via LabCorp. I feel 50% better within the first few dosages of Biaxin or Zithromax and relapse also with 3-4 days no meds, I told my LLMD that this made think most of my are from symptoms from Bart too.
This happens even on what would be consider small dosages like only 250mg Biaxin twice a day. I started and stopped it several times over the course of two months and the pattern repeated itself each time. I kept having to stop because I couldn't sleep at all on it.
Then only lasted two weeks on Zithromax before tons of ear swelling, pain and ringing, after that tried zithromax again, bactrim, pencillin vk, amoxycillin each with about a month break and one dosage even part of a pill causes the same effect, so I haven't been treating except for Zhang herbs which aren't doing anything for me.
I also could have sworn that both the bactrim and the amoxicillin made me fell better after only one partial pill dosage. Though it could have been a concidence because I vary with symptoms a lot even between one day all that time. I gave up on the bactrim after two dosages and the amoxicillin after one because of the severity of the ear symptoms.
Posted by seibertneurolyme (Member # 6416) on :
Hubby's LLMD told him that if someone only had Bartonella and didn't have Lyme or coinfections the treatment would only be 10 days or at most 2 weeks of antibiotics.
But as we all know if you also have Lyme the treatment probably needs to be 4 - 6 months minimum.
Whatever hubby has may have improved on Bactrim but over a year on that med did not get rid of the bug. Positive tests from both F lab and Clongen after being on the Bactrim.
Hubby will be one of the first in line when this new test becomes available. After a couple of months I am sort of losing confidence in Factive as the answer for hubby.
Bea Seibert
Posted by kitty9309 (Member # 19945) on :
This is a really good article. I have read it a few times.
Bartonella seeds to the blood every 5 days from the primary niche (hiding place).
Posted by kitty9309 (Member # 19945) on :
24 hours is a long time.
Strep bacteria replicate in 20 minutes!
TB has a long replication rate as well- 16 to 20 hours- hence the long treatment time.
[ 10-01-2009, 04:46 PM: Message edited by: kitty9309 ]
Posted by asus (Member # 13881) on :
My Blood was tested by Dr. Breitschwerdt as well. I tested positive for both Bartonella vinsonii subsp. Berkhoffi and Bartonella Henselae. I have been on Zithromax 500mg and Rifampin 600mg since the middle of June (about 3 months). I felt significantly more fatigued and achey when I first started the meds, but I don't feel much better yet. kitty9309, what drugs are you on? I too was told to be patient and not expect much before 5 or 6 months.
FWIW I have only ever tested positive for band 41band on my lyme tests, and always tested negative for Babs. My the major symptoms of my illness started abruptly with fatigue, brain fog, and senstivity to light/sound. Looking back, however, I had a slow buildup of other symptoms such as anxiety, capillary fragility, pain in the liver area, and migraines.
Before I was ever tested by Dr. Breitschwerdt I took a Z-pack for a totally unrelated issue and it pretty quickly improved my cognitivie symptoms. I didn't continue the zithromax after 5 days, and I relapsed. That was my first clue about this...
Posted by feelfit (Member # 12770) on :
Thank you Asus for adding to this thread. Did your LLMD have connections to have your blood tested by Dr. Breitschwerdt?
I hope that this test is available as planned for the rest of us.
It is nice to know just what strain that you have too. At least you know that you are targeting the correct bug.
Good luck in your healing, Feelfit
Posted by blinkie (Member # 14470) on :
This is great news! And a long time coming. I hope this results in methods for erradicating bart.
I took rifampin and bactrim DS for 4 months and felt completely normal on these abx. I had my life back! It was wonderful!! Every symptom I had disappeared.
I had to stop due to ankle pain, though. Weird. Now, symptoms are returning. Now, I'm fighting c-diff from all the rifampin and not sure if I'll be able to go back to treating bart or not.
Posted by imagine2 (Member # 3136) on :
Feelfit, The number for Galaxy Diagnostics has been disconnected. Do you have a working number for them?
Posted by asus (Member # 13881) on :
Yeah I guess I kind of do have a "prolonged herx" going on, esp from the Rifampin. Basically, it makes me more irritable/depressed. Although its tough to tell with Rifampin whats a "herx" and whats a side effect. Rifampin is a weird one. It interacts with so many drugs and hormones.
As with getting your blood tested I don't really know what the mechanism is now. At the time I did it, my Dr. just had it sent there. But now it appears they are setting up a commercial lab, so it should be more straightforward.
As far as antibioitcs, I have no idea. It seems there are so many combos that are tried for Bart. I am glad they are doing some sort of sensitivity testing. I have heard everything from Rifampin/Zith, to various Quinalones, to Rifampin/Doxy to Bactrim, etc... And then Dr. Schaller always talks about these HH herbs... I'm honestly not sure what to think.
Posted by blinkie (Member # 14470) on :
I noticed improvement within the first 2 weeks.
I was feeling 100% by the third month but started having major ankle probems. I'm not sure if that is considered "tendon" or not. Afraid that means I might not be able t take levaquin.
It cleared up my last remaining MAJOR symptoms (shortness of breathe, lung compression feelings, asthma symptoms, insomnia, and some others) as well as some remaining minor symptoms.
I still have to talk to my LLMD about future treatment options. Maybe i will just have to pulse flagyl to keep the c diff at bay or something, I don't know.
Posted by MariaA (Member # 9128) on :
Could anyone PM me how to get a test through Dr B? I live in the area and have been following his work in the bartonella testing for the past few months. I assumed that there wasn't anything available to other patients yet. I test negative for b. henselae and b. quintana but have symptoms and am responding to Rifampin, and I would LOVE to know whether I actually have bartonella or not.
Posted by Myco (Member # 9536) on :
Blinkie,
Your symptoms sound like Mycoplasma to me, which Rifampin would have hit. You might want to try Minocin, Doxy or Zith or a quinolone like Factive and see how it goes.
Posted by seibertneurolyme (Member # 6416) on :
Glad some are seeing positive responses to meds.
Personally find this thread discouraging since I don't see any new meds listed. Hubby has been treating for bart/BLO/mycoplasma continuously for over 2 years.
He has initial positive response almost immediately to some meds -- especially Levaquin and maybe Clindamycin and Factive, but over time the meds seem less and less effective and neuro problems start creeping back.
I sure hope the lab is up and running soon. A definitive diagnosis would at least be a starting point.
Bea Seibert
Posted by tick battler (Member # 21113) on :
feelfit - thanks for posting this! Great find!
tickbattler
Posted by aklnwlf (Member # 5960) on :
I'm hoping for a definitive test too. After that I need a new LLMD to treat.
Posted by coltman (Member # 21272) on :
quote:Originally posted by kitty9309: I had my blood tested by Dr. Breitschwerdt.