Update on Dr. B visit yesterday

[KaraM]

So much for trusting my gut - I really did not think my children would have any positive results on IgeneX. The western blot and "final results" are not in yet, but my dd8 was positive for Bartonella. My dd11 was borderline. I asked about the possibility of false positives, since I've read that about IgeneX. But Dr. B. said he very rarely sees such clear positives as my dd8's for Bartonella.

 

On the one hand, I'm terrified of a long road ahead. On the other, I'm glad we found something to go after. I was really beginning to question the PANDAS (PITAND) diagnosis to begin with.

 

So we started them both on a combo of Zithro and Bactrim and will now start seeing a LLMD - either Dr. J or a doc someone recommended closer to home. (It's a long drive to CT for us - especially when dd8 has a hard time with car rides...)

 

Dr. B. also recommended we have dd11 (nonPANDAS) see an ENT to evaluate for a T&A due to recurrent throat infections (and what we thought was causing dd8's exacerbation). His titers continue to fluctuate and every few weeks he complains of a sore throat...So we'll be doing that as well. (I had already set up an appt with an ENT because my gut was telling me this would be necessary...I guess the instinct was correct there...)

 

Thanks again to everyone for your support and suggestions along the way.

 

Kara

[NancyD]

Kara,

 

It can be very difficult to get a positive on Bartonella so that's great you have some clear direction now. I suspect my DD15 too has Bartonella (in addition to PANDAS and Lyme) but the co-infection panel came back negative 6 months ago. We're now waiting for the PCR test to come back. We have found the anxiety and OCD the most difficult to treat. In addition to Dr. J, Dr. Richard Horowitz in Hyde Park, NY is great, but I know that doesn't help reduce your travel time. We do most of our monthly consults by phone but we have been seeing our doctor for many years. Check to see if either does telephone consults. I know this is difficult news but now you can get going with treatment. Don't be surprised though if other co-infections are involved.

 

Nancy

[JAG10]

Whenever I see positive Bartonella by itself, I always wonder if it came from cats since half of cats will test positive at some point during their lives. Is it the same Bartonella? Is the treatment the same for TBD Bartonella vs Bartonella from a feline?

[philamom]

Whenever I see positive Bartonella by itself, I always wonder if it came from cats since half of cats will test positive at some point during their lives. Is it the same Bartonella? Is the treatment the same for TBD Bartonella vs Bartonella from a feline?

y

Edited April 29, 2012 by philamom

[Haileymadison]

Whenever I see positive Bartonella by itself, I always wonder if it came from cats since half of cats will test positive at some point during their lives. Is it the same Bartonella? Is the treatment the same for TBD Bartonella vs Bartonella from a feline?

 

 

I have wondered about this myself. We got my dd6 a kitten when she was 3 years old. She has had at least 1,000 cat scratches over the past 3 years. She has never had any symptoms of "Cat Scratch Fever". I seriously doubt she has Lyme. There has never been a reported case of Lyme in our county, but Bartonella caused by cats definitely concerns me.

[JAG10]

Melinda- Do you know if the Igenex test differentiates different types of Bartonella? Or do they only test for TBD Bartonella? Do you know if there is any speculation of cross-reactivity?

 

How's your dd, btw?

 

Mine leaves for CT tonight. DH is taking her this time. This is me letting go....some

[philamom]

y

Edited April 29, 2012 by philamom

[JAG10]

We adopted two kittens last August and that was my rule; they must remain "indoor only" cats. Even with that, I got them de-clawed. Now we promised the agency we adopted them from that we wouldn't do that, to some it is considered mutilation. We love our kitties, we are so happy they are part of our family, they are well taken care of and treasured.....but I'm not risking my girls' already compromised health to keep their front claws.

 

My dd was backsliding for two weeks after her last upper canine came out 2 weeks ago. Even the restricted eating we hadn't seen since before IVIG #1 was making an appearance. I started the prednisone a few days early and it stopped the backslide in its tracks. Thank goodness!

[philamom]

We adopted two kittens last August and that was my rule; they must remain "indoor only" cats. Even with that, I got them de-clawed. Now we promised the agency we adopted them from that we wouldn't do that, to some it is considered mutilation. We love our kitties, we are so happy they are part of our family, they are well taken care of and treasured.....but I'm not risking my girls' already compromised health to keep their front claws.

 

My dd was backsliding for two weeks after her last upper canine came out 2 weeks ago. Even the restricted eating we hadn't seen since before IVIG #1 was making an appearance. I started the prednisone a few days early and it stopped the backslide in its tracks. Thank goodness!

y

Edited April 29, 2012 by philamom

[mama2alex]

Kara,

 

Glad you are getting some answers on what infections to treat. My ds10 has Bartonella too and we've seen dramatic improvements with treatment. Its been 6 months and our LLMD does not feel that we've knocked it out yet though. We started with Rifampin, added Alinia, then added Azith, then added an herbal remedy, then switched Alinia to Cedax, then upped Rifampin a bit. We will be switching out the Azith for Cipro in two weeks. They are also treating for Lyme at the same time, although he tested neg for it.

 

We had the same questions as others about Bartonella. Could it be the lone infection and transmitted by a cat? Our LLMD said if it were the Bartonella transmitted by cats, the symptoms would be different - it wouldn't look like this. And assuming its tick-borne, it would be extremely rare for a tick to transmit only Bartonella.

 

I don't know your dd8's strep history, but just wanted to mention that our LLMD believes our ds10 is harboring strep in his nose. Since your ds11 seems to have an ongoing infection, you might want to ask the LLMD about your younger child and whether she might be harboring strep anywhere. Strep and Lyme/TBI's seem to LOVE each other. My ds is now on a antibiotic nasal spray to hopefully knock this out too.

 

Ugh, what a battle. Wishing you the best on your journey forward!

[KaraM]

My dd8 had a diagnosed strep infection a few years ago and was treated at the time...this was all prior to the OCD. Then, 1 1/2 years ago, when the OCD was diagnosed she had a negative culture. But a few months later, a positive blood test. I now suspect she had an undiagnose/untreated strep infection about 2 years ago. Anyway, Dr. B. diagnosed her with PANDAS in June 2009 and she was on Zithro for the next six months and did really well. She's seen him a few times. She's had blood tests several times as well (all negative - pretty low, too). When we saw Dr. B. Monday, he looked in her nose as well and thought all looked fine. So, I think she's ok in the strep department....(but we had been wondering the same thing).

 

We don't have a cat...although a few of her friends do, so I guess that's a possilbity.

 

Are Rifampin and Alinia antibiotics as well?

 

Another learning curve coming on...

 

Glad you're getting improvement with your treatment. How long did it take after starting treatment to see improvement?

 

Thanks,

Kara

 

Kara,

 

Glad you are getting some answers on what infections to treat. My ds10 has Bartonella too and we've seen dramatic improvements with treatment. Its been 6 months and our LLMD does not feel that we've knocked it out yet though. We started with Rifampin, added Alinia, then added Azith, then added an herbal remedy, then switched Alinia to Cedax, then upped Rifampin a bit. We will be switching out the Azith for Cipro in two weeks. They are also treating for Lyme at the same time, although he tested neg for it.

 

We had the same questions as others about Bartonella. Could it be the lone infection and transmitted by a cat? Our LLMD said if it were the Bartonella transmitted by cats, the symptoms would be different - it wouldn't look like this. And assuming its tick-borne, it would be extremely rare for a tick to transmit only Bartonella.

 

I don't know your dd8's strep history, but just wanted to mention that our LLMD believes our ds10 is harboring strep in his nose. Since your ds11 seems to have an ongoing infection, you might want to ask the LLMD about your younger child and whether she might be harboring strep anywhere. Strep and Lyme/TBI's seem to LOVE each other. My ds is now on a antibiotic nasal spray to hopefully knock this out too.

 

Ugh, what a battle. Wishing you the best on your journey forward!

[EAMom]

Hi all,

here is a link with information on Bartonella in cats:

http://www.veterinarypartner.com/Content.plx?P=A&A=1581

[Joan Pandas Mom]

Hi Kara, We saw Dr. Leon Hecht in Portsmouth, NH a few times. He is a ND and LLD. We still don't know if my son has lyme. The last time I saw him he ordered more labs, but DS got so severe I haven't had them done yet. He was featured on NH Chronicle last summer with some of the other LLDs. Good luck and I'm happy you are getting some answers.