A Double Lyme Update

Where to start?  I have so much to tell you  about our trip to New Jersey today to see the Lyme doctor (Craig wasn't happy he had to come along, but that's life).  I'll start with Jamie, my almost-16-year old son.

The doctor reviewed Jamie's test results with us.  He tested positive - indicating both old and current infection - for Lyme disease.  That wasn't too surprising, since we suspected it.  This could be the same Lyme infection that triggered his CFS to start back in 3rd grade or the Lyme infection he was treated for in 7th grade (he never fully regained his stamina after that one) or this could be a newer infection he picked up in the last year or two.  No way to tell really.  Lyme is transmitted by a tick bite (many people -myself included - can't recall being bitten because the ticks that transmit it are tiny) and is caused by a spirochete (similar to the one that causes syphilis), something closely related to bacteria and treated with antibiotics.

Jamie also tested positive for babesiosis, another common tick-borne infection (often referred to as Lyme co-infections) that often accompanies Lyme.  Babesiosis is caused by a parasite, a paramecium, if I remember my AP Biology correctly!  It's helped by antibiotics but also needs some specialized medications.

You may remember that all this started a few months ago because we noticed several unusual symptoms in Jamie - including lines on his back - that are associated with bartonella, another tick-borne Lyme co-infection.  Jamie's bartonella test came back negative, but the test is often inaccurate, so the doctor will treat for that, too, since his symptoms match.  Bartonella is caused by a bacteria and treated with antibiotics, though it usually requires some different medications than Lyme.

The doctor's strategy is to begin with a broad-spectrum antibiotic that will work against the Lyme and will also begin to chip away at the other infections.  Doxycycline is often the first choice, but it causes extreme sun sensitivity (as I can attest!), so during the summer, he prefers to prescribe Bactrim (I'm allergic to sulfa drugs and can't take it).  So, Jamie will start on that tonight, and we go back for a follow-up visit in 4 weeks.  He also noted that Jamie shows signs of yeast overgrowth and recommended an herbal product that should greatly improve his GI symptoms.

We are all feeling both excited and a little scared!  The doctor did say to expect a fairly severe herx reaction (symptoms get worse before they get better) because he has three infections and has probably had them for a while (we first noticed the bartonella lines a year ago).  So, the rest of the summer could be rough for Jamie.  On the plus side, the doctor is very optimistic that Jamie will improve with treatment and most likely see an improvement to symptoms he's been living with for years.  In fact, the doctor - who is very mild-mannered and understated normally - said he finds Jamie's case very interesting and exciting.  Though he's not a CFS expert, he understands that many cases of CFS begin with some sort of triggering infection.  We've always known Jamie's began with Lyme in 3rd grade, so he's interested to see how much Jamie will improve with treatment, especially since he was never before tested for any of the co-infections.  Jamie is in very good spirits, with the same hopes and optimism as the doctor.

As for me, he wants me to try going off doxycycline!  Though it's very hard to differentiate CFS symptoms from Lyme symptoms (as is obvious from Jamie's case), I knew when I got Lyme because of new symptoms - mainly nausea and knee pain - and I haven't had any of those symptoms in months.  His general rule of thumb is to treat until the patient has gone 6-8 weeks without symptoms, but my case is special!  The CFS has made it harder to get rid of Lyme, and I've tried stopping antibiotics twice before, and each time, my symptoms returned within a week.  So, he wanted me to be symptom-free for 2-3 months before stopping.

As much as I can't wait to get off these high-dose antibiotics, I'm scared!  The previous two times I tried, I had to go through another 2-month herx reaction each time I restarted.  I don't want to go through that again!  He told me it's up to me whether I stop today or when I run out of pills in a couple of weeks, so I think I'll wait.  I also need to go off my birth control pills (I take 90-day pills) and get my period soon, and that always makes all my symptoms worse, so I think I'll do that next week - I don't want to have multiple changes at once so I can accurately assess the effect of stopping the doxy.  I kept asking the doctor about "what if" my symptoms return, and he just smiled and said, "You'd go back on the doxycycline, but I'm optimistic."  I like that about him.

So, lots of news in our family today and lots of mixed emotions.  Nothing to do now but wait and see - for both of us.

P.S. Renee - The doctor recommended the very same supplements you did to counter the effects of the herx!  Thanks for the great advice - I'll order them tonight!