Helpful Bartonella overview

[LNN]

I stumbled across this link

http://www.benbrew.com/lb/lb.html

and found it somewhat helpful in that it's one of the few layman's blogs that cites sources for many statements. It also has a pretty decent list of suggested reading at the bottom.

 

Was thinking about also posting on the Pandas forum, since there's a section about how organisms can breach the BBB and how cytokines from multiple infections can cause symptoms/damage. But I don't want to stir a pot of controversy. So maybe it you guys find it helpful and correspond with others who may benefit, you can share it via PMs.

[kmom]

Thanks for that website. I just skimmed it and looks like a great. Look forward to reading later. Sad we have to worry about stirring the PANDAS pot. I used to be a "PANDAS only" subscriber but I still loved any and all info/ideas people could give me to get my kids well. Maybe you could put, "food for thought" or "just thought I'd share" if you post it. Dr. J told us the other day that Lyme bands 31 & 34 are linked to an autoimmune response in patients and he thinks that could be the PANDAS link in my kids. And he finds a lot of overlapping of PANDAS and Lyme in his patients. But I understand about not wanting to stir the pot.

[sf_mom]

Great find. Thanks for posting and will definitely bookmark website!!!!!!

 

We also have low RBC in both twins which I believe is impacted by the Babesia/Bartonella....

[LNN]

Yeah, I was very married to Pandas too. My friend was suggesting lyme 6 months before I was ready to entertain the idea, even tho we live in CT and I knew my kids had had tick bites. I was so stuck on the known strep infections and the amazing response to prednisone, that I just couldn't make room in my mind for anything else. It was only after IVIG didn't work the way it was supposed to that I was out of options and had to confront the possibility that I was missing something and might have to jump from one fringe disease to another that was in some ways even more controversial and expensive.

 

I've already made the mistake once of saying things to parents as though I was sure of myself. So I'm reluctant to do that again. I can only say what's been true for my family, and even then, since things are still unfolding and we still see ups and downs, I can't really say I even have all the answers for my own kids. For all I know, Pandas and lyme and bartonella are all part of the problem and I've been partially right and partially wrong lots of times. So it gets touchy.

 

BTW - warning for those who are pursuing a "naturals" path - the author of this blog is a firm believer in antibiotics and says some things against homeopathy that may upset some people. I don't post the blog with the intent of offending anyone. It's just a good overview with citations. Some of it you may have to skim over if the author's comments don't synch with yours. No disrespect meant on my part.

[sf_mom]

When you know better you do better. We too jumped into PANDAS diagnoses and the treatments definitely helped our older son. I used to ignore the Lyme posts thinking they weren't relevant to our situation. As everyone knows, the 'lyme' route or chronic infection recovery is not easy either and I worry we'll not get it all. Treatment it is helping in ways I never imagined but our story/journey is not over.

 

I was devastated by the little boy on Oprah and stated on the show.... there are 15 million children in the U.S. that suffer from childhood mental illness. I wonder how much is an infection/virus 'MCIDS' based. These questions keep me up and I believe there is a much bigger spiritual journey ahead for our family. We are forever changed and function from a new perspective that we are just settling into how to make it work. I never imagined I'd have three chronically sick children but in the same breath I am grateful to be on this journey. We have learned so much.

 

-Wendy

Edited February 21, 2011 by SF Mom

[RNmom]

Thanks for posting a great source of information. I read it and saved it for future reference.

[mama2alex]

Please do post it on the PANDAS/PITAND forum. I walked around for a year with my son's positive Bartonella test not knowing the relevance or how serious Bartonella is. I will always regret that year. It was only thanks to the gentle persistance of Lyme Mom, SF Mom, and Elizabeth that I ended up pursuing this for my son. And it wasn't until we started pursuing the Bartonella and possible Lyme that he started to get better and stay better.

 

I know a few on the PANDAS forum grouse when Lyme/co-infections are mentioned, and they are the loudest, but I think the vast majority appreciate the information. For newer folks who don't yet get the relevance of Bartonella/Lyme, etc, maybe you could just say that Bartonella infections cause psychiatric symptoms similar to PANDAS.

[LNN]

Oh, sure, just when my butt has finally started to heal after all those hat pins were stuck in that voodoo doll likeness of me the last time things got "passionate"

 

No, I'm finding it much harder to bring this up these days. The other day I wrote a thank you note to a friend and included an update on the past year. I re-read it and I sounded like a complete lunatic. "Dear Suzy, Do you recall how I told you last year about DS spending three days in the PICU for blood dialysis for his rare autoimmune disease called Pandas? Well, when he didn't get better, we spent thousands more sticking a needle into his hand for two days to infuse him with antibodies from other people. When that didn't make him better, we found a doctor who says he has lyme disease and now he takes 11 pills a day. Now that researcher in Oklahoma has looked at his sister's blood and it looks like she has the same rare autoimmune disease and also has lyme. But so far, she's only taking 7 pills a day. The good news is that the kids no longer have OCD, no one thinks DS has Tourettes or aspergers and he can finally read at grade level. Hope all is well with you."

 

So I guess I'm feeling a little gun shy about suggesting other people join me in my strange world...

Edited February 23, 2011 by LLM

[KeithandElizabeth]

Oh my gosh, I cannot stop laughing. This could be my exact note!

 

To add to your post, I had 4 grandparents and my brother all go to their separate doctors and get the Anti-Dnase B test along with the ASO and Streptozyme tests! Then several different doctors became confused when a few of the family members (mind you these are not my children, but their extended family members) had elevated Anti-Dnase B. Then two people were referred out to Infectious Disease Specialists who just scratched their heads.

 

So, after a year of frightening our whole extended family and friends about strep, we now are trying to teach everyone about lyme disease, but we get quite a bit of eye rolling!

 

eli

[sf_mom]

Good Post... Still Laughing!

Edited February 23, 2011 by SF Mom

[jjl]

This is an absolute riot! I think I'll use it for one of those Christmas yearly letters that people send out saying how great all their kids are doing except little Johnnie or Sally that got a B in 2nd grade and was traumatized. Well, this note ought to cheer them all up. I'm still rolling. John L

 

 

Oh, sure, just when my butt has finally started to heal after all those hat pins were stuck in that voodoo doll likeness of me the last time things got "passionate"

 

No, I'm finding it much harder to bring this up these days. The other day I wrote a thank you note to a friend and included an update on the past year. I re-read it and I sounded like a complete lunatic. "Dear Suzy, Do you recall how I told you last year about DS spending three days in the PICU for blood dialysis for his rare autoimmune disease called Pandas? Well, when he didn't get better, we spent thousands more sticking a needle into his hand for two days to infuse him with antibodies from other people. When that didn't make him better, we found a doctor who says he has lyme disease and now he takes 11 pills a day. Now that researcher in Oklahoma has looked at his sister's blood and it looks like she has the same rare autoimmune disease and also has lyme. But so far, she's only taking 7 pills a day. The good news is that the kids no longer have OCD, no one thinks DS has Tourettes or aspergers and he can finally read at grade level. Hope all is well with you."

 

So I guess I'm feeling a little gun shy about suggesting other people join me in my strange world...

[LNN]

Well, I'm glad you guys can see the humor in this bizarre world!

 

Tami gave me an opening on the Pandas forum and I posted the link in what I hope was a helpful way...

[FallingApart]

OMG you just described my life...

 

Dear Suzy, Do you recall how I told you last year about DS spending three days in the PICU for blood dialysis for his rare autoimmune disease called Pandas? Well, when he didn't get better, we spent thousands more sticking a needle into his hand for two days to infuse him with antibodies from other people. When that didn't make him better, we found a doctor who says he has lyme disease and now he takes 11 pills a day. Now that researcher in Oklahoma has looked at his sister's blood and it looks like she has the same rare autoimmune disease and also has lyme. But so far, she's only taking 7 pills a day. The good news is that the kids no longer have OCD, no one thinks DS has Tourettes or aspergers and he can finally read at grade level. Hope all is well with you."

 

The only thing is that we aren't yet taking 900 pills for Lyme. We are only in the diagnositc stage but are super excited to be in this stage.