Oops, I forgot to tell you....we got some news (well, sort of) about Jamie's Lyme tests this week. I was supposed to drive him to NJ today to see the Lyme doctor and review the results of his Igenex tests, but with all that went on this week, I just couldn't spare a full day for the trip. I figured even if he tested positive, I wouldn't start him on treatment right before vacation anyway, in case he has a bad herx reaction.
So, when I called to postpone his appointment, I asked them if they could check his test results. She didn't want to give me details over the phone, but she said he did have more than one positive test - I'm guessing Lyme and bartonella since that's what we suspected.
So, he and I have appointments the week we get back, and we'll see what's ahead for him. Since we suspect he's had the bartonella for almost a year now, and the Lyme could even be left over from when he had it in 7th grade (3 years ago), he could be in for a severe herx reaction (the initial worsening of symptoms when treatment starts). But there's no school for almost 3 months, and hopefully, he will eventually improve with treatment. We've been worried because his condition has sort of plateaued over the past few years - maybe this is why. We're very hopeful for his future.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Sue, when you get time to respond, I want a post from you about what bartonella is. I also want to understand why so many CFIDS patients seem to have Lyme. How is it possible that so many are getting bitten by ticks? Should I get tested??
ReplyDeleteJudy -
ReplyDeleteBusy today packing and it's past my nap time, so I'll keep this brief for now!
Use the search box in the left-hand column on my blog to search for bartonella, and you can read my posts about when we started to suspect Jamie had it and what it is. I've been promising a post on Lyme and its co-infections for a while, but...well, you know how things have been the last 2 weeks. I'll do it when i get back.
Lyme is practically an epidemic all over the US and Canada and is present on every continent except Antarctica. At least 50% of the people who get Lyme don't recall a tick bite - they are tiny and attach in unobtrusive spots, then fall off a couple days later.
I believe that everyone with CFS should be tested for Lyme because the symptoms are so similar and Lyme is becoming so prevalent.
Here's a post I wrote about Lyme and CFS (I got Lyme 2 years ago...on our annual road trip, in fact!):
http://livewithcfs.blogspot.com/2009/03/cfs-and-lyme.html
It links to another post on Lyme and CFS, too.
Hope that helps for now -
Sue
Lyme is relentless, isn't it. So sorry Jamie has to go through treatment for Bart~ glad it can wait until after your vacation..Have a great time! Be safe...
ReplyDeleteI hope the treatment helps him get back on his feet ASAP!
ReplyDeleteHope all is well!
xoxox
Thinging of you - I hope you get some positive, constructive news!
ReplyDeletehi sue,
ReplyDeletecame across your blog when i was looking at bartonella rash photos...
i breathed a sigh of relief when you spoke of going to see someone about lyme.
if interested, please see my daughter age 17 blog:
www.bitemeback.blogspot.com/
nicole was almost given a diagnosis of CFS 2 years ago. she has lyme/bartonella/babesia. iv meds. we live on vancouver island canada but she grew up in SFO bay area for 9years. there are some great docs east coast for lyme...ken singleton is in maryland? nicole has so many of the symptoms of bartonella, as soon as i mentioned the pain on the soles of the feet she asked the question:lyme?
we have been on this journey since nicole became ill with strange symptoms in 2006 but was misdiagnosed with asthma-common apparently.
found our way to dr charles ray jones in New haven CT. and dr richard horowitz in hyde park, ny.
my email: cpowellworld@aol.com
i was misdiagnosed with fibromyalgia for 14years, but am quite healthy now.
take care. i think i know some of the torture your family has been through.
chris & nicole