Bartonella

[pathfinder]

My ds 17 has had pandas for last 8years but dxed only last year and the treatments were very helpful but we are not at 100%( IVIG and agumentin were very successful about 70% to 85-90 %)

As one of our quest for attaining 100%, I took my ds to a lyme doctor in Beverly hills 2weeks ago. ( thank you for SFmom) Today at our second visit with dr , we were told that ds does not have lyme but he has bartonella as per Quest lyme disease western blot test. Ds draw more blood for Ignex test and we will know more in another 2 weeks meanwhile dr. started ds on Rimfarpin 300g Bid. Dr was happy that there was something that could be help my son so was I. ( only pandas mom would be glad of bad blood test result)

Does having T4, Free out of range high anything to do with Bartonella?

I will report back when we have complete Ignex test result but first I want to thank you all for being steps ahead and guiding rest of us with encouragement and wisdom.

Pathfinder

[Suzan]

I don't know about the T4 but I do know my doc says thyroid needs to be monitored with Bartonella (I think it was Bartonella and not lyme) but I assumed it would be low. Obviously I don't know

 

I hear you about the happiness of finding a bad test. I am glad you are on the way to some action and healing.

 

Susan

[sf_mom]

I am so glad you unraveled this for your son and pray he continues to make advances toward recovery. Our Dr. believes that only 5% to 10% of all individuals with Bartonella are stand alone infections..... meaning the Lyme is probably there.

 

There are a few children that do have Bartonella and IND Lyme results. As they move forward with treatment they are hoping they will eventually get converted results for Lyme. The Bartonella seem to take predominance until it is gone. My friends son has been treated for Bartonella 10 months.... the results are still IND for Lyme. Their Dr. keeps retesting for Lyme every three months.

 

I hope you continue to post about your experience and son's recovery. I would love to know more about your experience with the Dr. in the L.A. area and treatment protocols. The only thing I know about him is that there are two individuals from the forum with thought to be Pandas now Lyme that are seeing him but don't post to the forum much.

 

The Rifampin should help but expect a herx!!!!!!!! Sorry I don't know much about T4 either.

 

-Wendy

Edited April 14, 2011 by SF Mom

[mama2alex]

My ds 10 had a pos Bartonella test, but neg Lyme test. Our doc said it would be extremely rare to have Bartonella without Lyme. Based on symptoms/family history, he thinks my son has Lyme, so they are treating for Lyme as well now. They started out just treating for Bartonella with a month of 300mg rifampin (son weighed 70 lbs), then added Alinia after a month. Then they added Azith and an herbal for Lyme/Bartonella a month after that. We've recently upped the Rifampin to 450mg, switched the Alinia to Cedax and switched the Azith to Cipro. He's been with the Lyme doc for 7 1/2 months now and is improving - its been slow and "two steps forward, one step back" but he is definitely heading in the right direction.

 

Did your doctor say he doesn't think your son has Lyme, or just that the test was negative?

[pathfinder]

My ds 10 had a pos Bartonella test, but neg Lyme test. Our doc said it would be extremely rare to have Bartonella without Lyme. Based on symptoms/family history, he thinks my son has Lyme, so they are treating for Lyme as well now. They started out just treating for Bartonella with a month of 300mg rifampin (son weighed 70 lbs), then added Alinia after a month. Then they added Azith and an herbal for Lyme/Bartonella a month after that. We've recently upped the Rifampin to 450mg, switched the Alinia to Cedax and switched the Azith to Cipro. He's been with the Lyme doc for 7 1/2 months now and is improving - its been slow and "two steps forward, one step back" but he is definitely heading in the right direction.

 

Did your doctor say he doesn't think your son has Lyme, or just that the test was negative?

 

 

My son's doctor did say that Quest is not reliable source for detecting lyme and he ordered Igenex complete lyme panel test so he is pursuing lyme.

What I do not understand is how he came to conclusion that my son has Bartonella. I am no expert here but all my ds's western blot tests were nonreactive/negative. Only thing that could have meant anything is CD57 test as they are numbers and not positive/negative result.

My head is spinning with Lyme/co and I am beginning to understand why lyme doctors are called lyme doctors.

Thank you for your encouragement.

[sf_mom]

I was assuming he tested for Bartonella. Did he do the test via Quest for Bartonella along with Western Blot. Do you have a copy of Lab results? What was the CD57 number?

Edited April 14, 2011 by SF Mom

[pathfinder]

hello SFmom

No, bartonella test is not among the test results I have with me. I was puzzled how my son's dr could say bartonella without hesitation only from CD57 but there must have been enough indication there.

here are his CD57 numbers from Quest Diagnostics

CD57+ 6 0-19% Lymphocyte

CD57+ 3 0-7% of WBC

CD57+ 167 0-741 cells/uL

CD57+/CD3+ 3 0-12 % lymphocyte

CD57+/CD3+ 1 0-4% of WBC

CD57+/CD3+ 84 0-468 cells/uL

CD57+/CD8+ 3 0-12% lymphocyte

CD57+/CD8+ 1 0-4% of WBC

CD57+/CD8+ 84 0-468 cells/uL

CD57+/CD3+/CD8+ 2 0-9%lymphocyte

CD57+/CD3+/CD8+ 1 0-3%of WBC

CD57+/CD3+/CD8+ 56 0-351 cells/uL

CD57+/3-/8- % of total WBC= 1

CD57+/3-/8- absolute =84cells/uL

 

CD57+/3- % of total WBC= 1

CD57+/3- Absolute = 84 cells/uL

 

SFmom I have been googling but no information regarding CD57 from Quest

I am posting this in case you can make something out of this but either way

you have my undying gratitude.

pathfinder

[sf_mom]

I am sorry I don't understand the CD57 all that well when it comes to co-infections. My girlfriend's Dr. made the association with the CD57 and he is also treating her for a co-infection based on those results plus the C4A levels and clinical symptoms for Babesia. She does not have positive co-infection results either.

 

Wish I could be of more help. I do know his overall levels are low enough and indicative of Lyme.

Edited April 15, 2011 by SF Mom