Mixed news...

[KaraM]

Hi,

 

My dd9 (diagnosed PANDAS March 2010, Bartonella March 2011) has been doing really well lately. Her IgeneX Lyme results were negative (only 41 IND). For the most part she is functioning around 95%, with little blips here and there.

 

A month or two ago I was looking at her original Western Blot results from 2010 and noticed that one of the Lyme specific bands had indeed showed up. Of course the results were negative based on CDC standards. I brought this to dr. J's attention and he said it indicates she was exposed to Borrelia. So, in addition to the Bactrim and Zithromax combo she's been on since March, he wants us to give her Tindamax twice a day, two days a week, until she is ready to come off all abx (two months after all symptoms disappear). Hopefully this is the key to getting her that last 5%.

 

In the meantime, I also had myself tested through a standard lab for Lyme and Bartonella. Both negative, but the Lyme looked a little suspicious to me. Dr. B agreed to order an IgeneX Lyme test for me. They sent the results to Dr. J. who was kind enough to look at them. He said they look highly suspicious and I should see an adult LLMD (Dr. H. here in MA). Four out of five of the IgG Borrelia specific protein bands we IND, and 41 was ++.

 

So, like others before me, I have mixed feelings about this. I do want to be treated and am hoping it will help with all these various symptoms I've had over the year that everyone (docs, famiily, therapists, friends) says are due to aging, stress, hormones, motherhood, etc. Time will tell.

 

Kara

[lyme_mom]

Hi,

 

My dd9 (diagnosed PANDAS March 2010, Bartonella March 2011) has been doing really well lately. Her IgeneX Lyme results were negative (only 41 IND). For the most part she is functioning around 95%, with little blips here and there.

 

A month or two ago I was looking at her original Western Blot results from 2010 and noticed that one of the Lyme specific bands had indeed showed up. Of course the results were negative based on CDC standards. I brought this to dr. J's attention and he said it indicates she was exposed to Borrelia. So, in addition to the Bactrim and Zithromax combo she's been on since March, he wants us to give her Tindamax twice a day, two days a week, until she is ready to come off all abx (two months after all symptoms disappear). Hopefully this is the key to getting her that last 5%.

 

In the meantime, I also had myself tested through a standard lab for Lyme and Bartonella. Both negative, but the Lyme looked a little suspicious to me. Dr. B agreed to order an IgeneX Lyme test for me. They sent the results to Dr. J. who was kind enough to look at them. He said they look highly suspicious and I should see an adult LLMD (Dr. H. here in MA). Four out of five of the IgG Borrelia specific protein bands we IND, and 41 was ++.

 

So, like others before me, I have mixed feelings about this. I do want to be treated and am hoping it will help with all these various symptoms I've had over the year that everyone (docs, famiily, therapists, friends) says are due to aging, stress, hormones, motherhood, etc. Time will tell.

 

Kara

:-) I thought my periodic fatigue was b/c of aging and motherhood but it all went away after lyme/babesia treatment. Good luck with your treatment -if it is lyme you can feel great again after treatment.

[aidansmom]

No great answer for you except that I am struggling with same thing.

 

I had 3 double double stared band on both IGG and IGM (band 31, 41 on both and 83-93 on igm, 34 on IGG. I can't decide if I should get treated based on my symptoms. I did schedule an appointment with Aidan's LLMD but it is not until Feb. due to trying to coordinate travel with Aidan's visit the schedule of the LLMD. I can't decided if the $$$ is worth the possible benefits especially with the costs of Aidan's treatment so high. I don't think that I am suffering from anything too terrible - but who knows. If this was all covered by insurance then I would probably be in there in a heartbeat.

[Christianmom]

I don't have any real advice but wanted to mention that I recently tried to get a consult with Dr. Horowitz, if that's who you mean by Dr. H. He has a one-year waiting listing. Even his assistant has a 9-month wait. So you may want to at least get on his waiting list even if you cancel later.

Edited November 15, 2011 by Christianmom

[SSS]

I called all my symptoms age, the high stress career in my past wore me out,

and dealing with my difficult daughter, you'd act like me, too.

It was my short term memory issues that really scared me- but I blamed that on my chronic insomnia,

or underneath, the fear I was for sure heading to alzheimers like my grandmother.

 

I understand the reluctance, believe me, I do. It is expensive, and I'd be lying if I said 3-4 months into it, I am already weary of it all.

But, I did have positive Lyme PCR test, and positive Bartonella test

(my own Igenex WB came back stating negative, but key bands positive or IND)

I am more afraid of letting this disease go further and untreated (personally.)

I am 44, I have young kids, and need to be around and healthy for them as long as I can.

And I tell myself (and others who are worried about me) that hey, I am looking forward to a better quality of life-

[KaraM]

No...different Dr. H. Was in Newton, now Watertown, MA.

 

I don't have any real advice but wanted to mention that I recently tried to get a consult with Dr. Horowitz, if that's who you mean by Dr. H. He has a one-year waiting listing. Even his assistant has a 9-month wait. So you may want to at least get on his waiting list even if you cancel later.

[KaraM]

you sound like you could be my long lost twin sister....

 

I called all my symptoms age, the high stress career in my past wore me out,

and dealing with my difficult daughter, you'd act like me, too.

It was my short term memory issues that really scared me- but I blamed that on my chronic insomnia,

or underneath, the fear I was for sure heading to alzheimers like my grandmother.

 

[Orion]

No...different Dr. H. Was in Newton, now Watertown, MA.

 

What?? The office has moved??

 

PM sent.

Edited November 15, 2011 by Orion

[cobbiemommy]

you sound like you could be my long lost twin sister....

 

I called all my symptoms age, the high stress career in my past wore me out,

and dealing with my difficult daughter, you'd act like me, too.

It was my short term memory issues that really scared me- but I blamed that on my chronic insomnia,

or underneath, the fear I was for sure heading to alzheimers like my grandmother.

 

We could be triplets. Soooo tired.