We finally got a positive bart test on my husband, after negative tests everywhere else. I have been trying to convince him that he has it based on symptoms and now I finally have proof. We got the prelim report today and it showed the following:
ANA homogenous 1:160 Babesia microti IgG Ab 1:64 B quintana Bartonella IgG 1:64 B quintana neg. B hensalae Bartonella IgM negative for both strains
Apparently the pictures show evidence of bart but not babs. The lab manager thought that the titer for bart was significant and evidence of current infection but the titer for babs could or could not mean an active infection. He did have one positive babs titer in Sept 07 but it was lower, at 1:20. It was from a different lab, but do you think this means his babs is getting worse or can different labs have different meanings for their titers?
Any comments are appreciated. I think the next step will be to treat the bart. Do you agree?
Thanks,
tickbattler
Posted by JayG (Member # 14594) on :
Hello Battler. It is so odd to congratulate a person on getting a dx of such a nasty litty disease but I am.
Now you know for certain what you are up against and can go into battle and win
I have no answers as to your question about different meanings for titres, but I hope one of our more savvy members will
I am very interested to know this myself
Good luck in you and your hubby's upcoming battle, you have our prayers and good thoughts coming your way
I grabbed Dr. B's bartonella description off of the healthcentersofamerica dot com site and am reposting it here for you
Have a great week end and best wishes for getting weller to you and yours
JayG
Until that day
Bartonella BARTONELLA-UKE 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. 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
Posted by Lymetoo (Member # 743) on :
Definitely treat the bart!
As for the babs titer being higher, it could be because the lyme has been knocked down a bit, allowing the babs to surface.
Good luck!! It's always good to know what you're dealing with! Posted by map1131 (Member # 2022) on :
Interesting, very interesting thread. Thanks for posting.
Pam
Posted by swedish lyme sufferer (Member # 14579) on :
Hi tickbattler!
Good to know at last! May I ask what symptoms he has that indicates bart to you?
Sore soles? Muscle twitching?
Posted by just don (Member # 1129) on :
I am going way out on a limb and asking a dumb question BUT cant recall if anyone ever posted this info.
HOW do you go about getting tested by Fry labs?? Blood drawn by?? Sent via fed-ex??
Do you send for a test kit first like Igenex?? AND who do you get to draw the blood that WONT laugh first at what your doing???
Specially since I dont have insurance,,,is it ANY easier to get treated by a duck when a positive test is had?? OR limited to treatment by a LLMD???
Sorry for hijacking the thread,but seems pertinent to THIS thread too?? Glad the original poster got a dx,,,sorry they needed one!!!
Have heard Levaquin is the BEST to get treated with,,,relapes common with other meds,,and NOT with Levaquin!!(hopefully)
What meds are they rxing for YOU now that you have a positive test??since IB--just don--
Posted by kelmo (Member # 8797) on :
Don..pm'ing you
Posted by daise (Member # 13622) on :
I'm sorry. Bart is no fun. However, there is nothing like knowing what you have!
The fact that his titer is higher now then before doesn't necessarily mean that the disease is getting worse, but merely that his immune system is responding better. We would not be chronic sufferers if our immune system was working properly.
As my Lyme symptoms started getting better, my 2nd western blot showed more bands. Same with my bart titer, a year ago I tested 1:40 and recently it jumped to 1:80 (igenex igg).
Posted by daise (Member # 13622) on :
(flooding again)
[ 22. March 2008, 04:07 PM: Message edited by: daise ]
Posted by tickbattler (Member # 14873) on :
All- thanks for your replies!
Swedishlyme sufferer: I have suspected bart for awhile for many reasons. First his CD57 tested at 155, then 240, which I believe is normal. To me this could mean that his lyme is under control but he has coinfections going on because he still has symptoms. Insomnia, headaches, head buzzing, frequent urination, brain fog, fatigue and sometimes nausea have been him most prevalent symptoms. I have heard that insomnia is a big one for bart. And the head buzzing seems to be bart. Someone also told me their LLMD thinks urinary problems could be bart. He also had an abnormal spect scan which can be caused by bart (or lyme). He also has long horizontal stretch marks across his waist which one LLMD said was not evidence of bart and only stria, but I am not sure b/c another LLMD said it was bart. One bart symptom list said cramps in the calves could be bart and my husband had that happen one time too. His headaches are in the front which could mean bart, based on a symptom list I saw.
Several months ago, he more lyme - like symptoms such as a stiff, creaking neck and random joint and muscle pains but that is not happening since he has had a few months of antibiotics.
Another thing I read in Dr. B's guidelines was that for chronic lyme sufferers, it is almost universal that they have one or more coinfections. I thought that was a pretty strong statement but it is turning out to be true for us.
Also for the person who asked about Fry, I just asked our pediatrician to draw the blood and have the results sent to her since we have a good relationship. I sent it to the lab myself in the package provided. I actually convinced our pediatrician to attend an ILADS seminar last fall so she is becoming lyme literate. You can call fry to get a test kit.
I hope this helps! tickbattler
Posted by daise (Member # 13622) on :
Tickbattler,
You convinced your pediatrician to attend an ILADS meeting?
You plant a seed, then watch it grow--and multiply: think of all the kids this pediatrician will see in the future!
You did terrific!
daise Posted by Mo (Member # 2863) on :
are many llmd's using the fry lab?
Posted by kelmo (Member # 8797) on :
You have to call fry labs and have them send a kit to your LLMD, I believe. At least, that's what they were doing last year.
Anyone? I don't know...he's our LLMD, so I just get 'er done right there in the office.
Posted by daise (Member # 13622) on :
Hi Mo,
You asked if there are many llmd's using Fry Lab. There are some, yes.
It's a question of insurance paying, for some. For others, it's a new testing method and so it's just not known if it's significantly better than western blot or not.
daise Posted by tickbattler (Member # 14873) on :
Thanks daise! Yes I have become quite the advocate after what we have dealt with. I get so angry at doctors who are closed minded and ignorant. Our treatment was delayed because our Yale-educated family doctor refused to believe my husband still had lyme a year after treating him for 3 weeks with antibiotics. She said the antibiotics dosage recommeded by Dr. J (who couldn't treat my dh b/c he is a pediatrician) was "dangerous." My dh believed her and this delayed treatment for another 4 months, during which time he became significantly worse. When this is all over, I'm going to send a letter to this doctor educating her about her "malpractice."
I'm giving a talk to my local Mom's club in May too!
As for Fry labs, I think that it is becoming more accepted by doctors. When I spoke to the famous Dr. J in Dec., he had not yet made up his mind about them. In my recent discussion with the lab manager at Fry, he said that they have become significantly busier in the past few months as more and more doctors are using them. As an aside, Dr. R in NYC (who is apparently very well respected) uses them!
tickbattler
Posted by kelmo (Member # 8797) on :
I just got the results of my second blood test.
A year ago, Fry lab did a blood smear and western blot (labcorp). My blood was sparkling clean.
My western blot had one pos, band 41.
I did six months of zithromax. On the last day, I added one rifampin pill and I herxed big.
A couple of weeks later, I was still a mess from that one pill, so I went to see Dr. F.
He decided since I was flooding symptoms, we should do another blood smear.
This time...bartonella! Yup! It finally came out of hiding.
I also tested positive for the HHV-6 virus. Not sure where we will go with that, but I asked him to test for it.
So, yes, you can have a clean smear, but still be infected.
Posted by daise (Member # 13622) on :
Hello tickbattler,
Your family has been through the mill. Isn't it awful what we have to go through? Your persistence and love for your family is evident.
You wrote that your doc committed malpractice. Yes--that's just what it is. Malpractice.
You're going to give a talk to your women's club? Go tickbattler!
I'm hearing good things about Fry lab. I hope it turns out to be better, more reliable testing than western blot. Many got diagnosed with western blot, yet many didn't.
Things are improving all around for Lymies, though it's been painfully slow, huh?
When I got my western blots--three separate times--trying to get diagnosed, I went to the headquarters of the main blood testing lab in this state, to get my blood drawn. Out here in Albuquerque, I was considered an anomaly (although I have since found other Lymies here--oh yes!)
I had to try and educate everyone I encountered at the blood lab. They very much wanted to handle by blood correctly, according to the IgeneX kit. They were willing to listen. As hard as it was to think, to talk and to explain, I was grateful they listened!
Even the president of the corporation met with me in a conference room.
I went there the first time with my nurse case manager who also wanted to see that everything was done correctly.
I was negative for Lyme all three times.
The CD57 count was positive--thank God and that's why I am getting treatment. That blood draw was straightforward.
A year later I had another western blot for Lyme and 3 coinfections--all negative!
______________
Hey everyone:
Is Fry blood pulling by a local lab complicated?
daise Posted by Mo (Member # 2863) on :
turns out we may do fry as well. i'll post about it if we do. anyone else use the lab?
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