Discouraged

[Suzan]

dd8 has been on her lyme meds for 2 months. By this time I had seen some very nice improvement with dd9 and knew we were on the right path. Dispite dd8's positive lyme test, I am feeling worried and discouraged because she does not seem to have improved much and she doesn't seem to herx much. Some of her symptoms are very different than dd9 and I so it's harder for me to understand and interpret. Maybe she's herxing by being more angry and difficult? Maybe the meds aren't working. I don't know.

 

She has seizures and an extra heartbeat. Small stature, slow growth, low muscle tone, tired, impulsive and other behavior issues, food ocd, sensory issues....

 

I am exhausted going to the chiro/neuro 3 times a week plus all the home exercises we are suposed to do plus school homework and everything else. I feel like her treatment is wearing me down and going against my treatment.

 

Sigh...

 

Susan

[NancyD]

I'm SO SORRY, Susan. Sending you a big hug! are you satisfied with your LLMD? I know you switched lately. Has your DD been tested for other co-infections? I can't keep both DDs straight. We cleared up many of DD's traditional Lyme symptoms but no help thus far with the anxiety and OCD. it's so frustrating! We're waiting for Bartonella, Babesia, and Myco P PCR testing to come back.

 

Nancy

[philamom]

Hugs Susan! Ever since my daughter's setback the end of January, I feel the same way...very discouraged.

[MichaelTampa]

Yes, after two months without noticeable improvement and without much herx, sounds like time to sit down with LLMD and discuss if it's time to try something different. It can be important what infection/coinfections are addressed and in what order, sometimes adjusting that can make all the difference.

[sf_mom]

Michael's suggestion sounds like a good one. Hugs too. I can't imagine how you handle it all by yourself. Treatment alone exhausted me somedays and thankfully I have DH 'the healthy one' to lean on.

[sf_mom]

Hugs too... I pray things settle soon and she is back on her way to recovery. When do you see Dr. J next?

 

-Wendy

[philamom]

Hugs too... I pray things settle soon and she is back on her way to recovery. When do you see Dr. J next?

 

-Wendy

Thanks Wendy...we see him in 5 weeks.

[Suzan]

I left an email for our old LLMD today to see if she can still respond. Our new doc is not an LLMD but is taking over my girls case and consulting with our old LLMD. It's still a little strange and I'm not sure how it will all work out. I will also call our doc to see what he thinks. If it turns out we aren't getting what they need, I'll have them go to my new LLMD who I think will work out fine but is not in our town.

 

We have not been tested for co-infections at this point but had low risk of them according to old LLMD although we were all on a bartonella watch.

 

I have remembered that dd8 has had some rashes which she never has usually. That could be herxing couldn't it? She's had some molluscum on her arm that she just could not get rid of and I realized today that this area on her arm seems much better. Maybe it's somehow related. She's also been unusually angry and difficult.

 

Anyway, thanks for your support and encouragement!

 

Susan

[justinekno]

My son had a raised bumpy rash on his arms at the beginning of his treatment and our LLMD thought it was related to the colon not detoxing properly (my son had some constipation issues). Once we got the colon working better (pipes clearing), the rash went away. We are dealing with Lyme and Bartonella. My son also had a rash on his face that seemed more related to Bartonella and seems to come in cycles.

 

 

I have remembered that dd8 has had some rashes which she never has usually. That could be herxing couldn't it? She's had some molluscum on her arm that she just could not get rid of and I realized today that this area on her arm seems much better. Maybe it's somehow related. She's also been unusually angry and difficult.

 

Anyway, thanks for your support and encouragement!

 

Susan

Edited March 30, 2011 by justinekno

[MichaelTampa]

Unusually angry and difficult counts as herxing for sure. As I don't think people really know much about what the rash is, I'm not sure they'd officially call it herxing, but do take it as a sign that the treatment is having an impact, which, in the beginning, is what we look/hope to see.