Update on us

[mama2alex]

Just thought I'd give a little update on our progress. I had my first appt with the LLMD on Tuesday. I'm looking into Lyme for myself because 1) our DAN doctor told me 5 years ago that he thinks I have Lyme, 2) ds looks like he might have it, and for various reasons I think that if he has it, I have it, 3) I've had symptoms for years that I am only now learning are all symptoms of Lyme. The most shocking part of the appt was the neurological test where she had me walk heel to toe - I could barely do it without falling over! This was hard for me b/c I used to be a dancer and I've always had great balance. She ran a Bartonella test b/c ds is positive for Bartonella and responding well to treatment, and she said that many of my symptoms are also Bartonella symptoms. She also ran a thyroid test. She's starting me on Doxycycline for 3 weeks to do a "provocation" test for Lyme, since my Igenex test 5 years ago was basically negative, but with a few Lyme-specific IND bands.

 

As for ds, he has improved greatly on Rifampin and Alinia, which they gave him to treat the Bartonella. He has been going to school every day for the last month, with just two days (immediately after Halloween) of going in a couple of hours late due to anxiety. He also was able to go with his class to Gold Country (in CA) for 3 days/2 nights of outdoor ed. He didn't need to call us once! This is a record for him since PANDAS came into our lives, and we are just amazed. Just over 2 weeks ago we added Zithromax for 3 weeks to do a Lyme provocation. About a week ago I started seeing an increase in anxiety, fatigue and mood swings. I'm hoping this will subside when we take him back off the Zithro early next week. The LLMD is also having us do a stool test for yeast, to see if this is why he goes off the rails every time he eats any sugar.

 

I'm nervous about my own treatment, as I'm already allergic to a couple of antibiotics, but am planning to forge ahead. We are all feeling much happier and more relaxed now that ds is doing so much better. Even this recent flare is nothing compared to the things we were seeing before.

[PacificMama]

Hi Mama2Alex,

 

So glad to read your update. It's really heartening to hear the positive improvement in people's children. I can't remember how long your son has been receiving lyme treatment... just a short while? And that's great you know about the bartonella. Seems we have lots of bartonella on the board too.

 

As to you... well, you've likely been reading that this lyme board has lots of membership in the "moms with lyme too" club. I hope you find some answers soon. It will be interesting to see how you do on the doxy. (I wonder about your "allergic reactions" to abx. Do you think this may instead be herx reactions? Rashes can be herxing... but not sure what reaction you are getting).

 

All the best... keep us posted.

 

Mary

[KeithandElizabeth]

I am so happy you are seeing some progress!!!

 

My son had a bartonella rash (purple streaks) across his back last winter and I never thought much about it until I read one of your posts saying that your son was positive for bartonella. I googled bartonella and sat there panicking as I looked at the computer. I then called lymemom and began our lyme journey! We really have learned so much from each other by just sharing our own experiences.

 

It is so nice to get such a great update from you.

 

And I wish you much success with your personal lyme/bartonella journey.

 

Elizabeth

[mama2alex]

Thanks Mary. He first saw the LLMD beginning of Sept '10, was on Rifampin for a month, then they added Alinia beginning of October, did that combo for another month, then they added the Zith a couple of weeks ago. So it's just been about 2 1/2 months.

 

I get very nauseous (and have even vomited) within a couple of hours of taking Azithromycin. Sulfa-based drugs make me itch all over (no rash) - also within a couple of hours. If anyone else has seen these kinds of reactions ease with Lyme treatment, I'd be interested to know. I am just really sensitive to medicine in general - I seem to need less than most people or don't tolerate it as well.

 

Thanks for continuing to post about Lyme on this board and the PANDAS board. You are very knowledgeable and always reasonable and level-headed. We never would have figured this out without all the "Lyme moms."

 

Hi Mama2Alex,

 

So glad to read your update. It's really heartening to hear the positive improvement in people's children. I can't remember how long your son has been receiving lyme treatment... just a short while? And that's great you know about the bartonella. Seems we have lots of bartonella on the board too.

 

As to you... well, you've likely been reading that this lyme board has lots of membership in the "moms with lyme too" club. I hope you find some answers soon. It will be interesting to see how you do on the doxy. (I wonder about your "allergic reactions" to abx. Do you think this may instead be herx reactions? Rashes can be herxing... but not sure what reaction you are getting).

 

All the best... keep us posted.

 

Mary

[mama2alex]

Hi Elizabeth! I didn't know that! I'm glad my post helped you. I wish I'd been as quick as you to take the Bartonella seriously. I'm still kicking myself. But I think we are on the right track now, and am hopeful that we will finally be able to get him completely better.

 

And you're right, we really do learn a lot from each other's posts. And you never know when some little tidbit you mention is going to help someone else. That's why I went ahead and posted all the boring details of my LLMD appt!

 

 

I am so happy you are seeing some progress!!!

 

My son had a bartonella rash (purple streaks) across his back last winter and I never thought much about it until I read one of your posts saying that your son was positive for bartonella. I googled bartonella and sat there panicking as I looked at the computer. I then called lymemom and began our lyme journey! We really have learned so much from each other by just sharing our own experiences.

 

It is so nice to get such a great update from you.

 

And I wish you much success with your personal lyme/bartonella journey.

 

Elizabeth

[Suzan]

Great news! I am glad your son is improving. I need to hear stories like that as my girls wil start treatment soon and I am worried about it since I am doing fairly poorly right now on my treatment. I look forward to seeing more updates from you!

 

Susan

[sf_mom]

Mom2Alex: I am so happy for you and all the progress your son has made. AND, treatment will bring a 'clearer/brighter' future for you, I promise. I had the itching issue and thankfully it went away with treatment. It probably bothered me for about two week.

 

-Wendy

[matis_mom]

Glad to hear the good news!

 

It's so interesting to see the same things come up for so many of us! Our LLMD said when you see all the mental stuff (OCD/anxiety) he suspects Bartonella and so he is treating DS accordingly. No Alina for us yet, just Rifampin on weekdays and Zithromax on weekends, plus Augmentin and Doxycicline (that's a lot of drugs!) I have not seen any major improvement yet, but at least he seems stable, except for getting a bit quick-tempered at times, and he made the connection with starting to snack on banana chips (which have sugar!), so that may be yeast creeping up over here as well.

 

I too think I have Lyme (seeing ID doctor again on Monday, hopefully some indicative results from bloodwork). It's funny too that I had so many little symptoms I did not think much about until I started reading about Lyme... I'm going to go try walking heel to toe and hope I don't fall!!!

 

Again, if it wasn't for hearing other people's experience, I never would have found out!