Thursday, December 11, 2008

Lyme Treatment Update

I spent Wednesday driving back and forth to see the Lyme specialist in NJ. It was mostly good news. This doctor is a bit strange in some ways, but he does seem to know a lot about Lyme and treats it aggressively. That's what I was looking for, so I'm willing to put up with his quirks.

All of my lab tests for co-infections came back negative (I had them all done earlier by my own doctor, but this doctor used Igenex), so that's good. My Lyme test was still not completely positive (per the CDC guidelines), but it was indicative of possible Lyme infection. That, plus my symptoms and my response to antibiotics, made this doctor certain I do have Lyme. He felt that my treatment approach is on the right track; I just stopped too soon during that first round of treatment when all my symptoms had resolved. He doubled the dose of my antibiotic (and told me to double the amount of probiotic I'm taking, too) and wants to see me back in a month. He may add another antibiotic at that time but didn't want to overwhelm my system all at once.

I've been on the double dose for just two days, and my knees started to hurt again today. That's good news! Another herx reaction means the extra antibiotic is killing off more Lyme bacteria. So, I'm very hopeful that I'm on the road to recovery (from Lyme anyway).

I'm also (finally) feeling better from that nasty respiratory virus. Wow, it was a bad one - knocked me out for over two weeks. Both boys have it also now, but they're handling it better than I did. Each of them has missed only one day of school so far (Craig was home today but is currently bouncing off the walls with energy!).

So, things are definitely looking up, and I'm finally starting to enjoy the holiday season. I even managed a little shopping at Target after my doctor's appointment yesterday! Hope you enjoy these photos of Craig putting the star on our Christmas tree and Jamie's insanely large cast for a broken toe!


Sherry said...

Glad for the help you're getting. I've been Internet shopping, but did get out to Macy's for an hour and 1/2 the other night. Can't believe that cast!

Renee said...

Sounds like your new doctor is good. Glad the antibiotics are working already.
Your tree looks so pretty.

Luke S said...

I thought I had I had CFS forever until I finally had an Igenex test which came back positive for lyme... You may want to check out this video

Paula said...


Did you ever get tested with Western Blot - either through Quest or Lab Corp? If so, would you mind saying what your results were? Mine came up neg - but I am not convinced..


Sue Jackson said...

Paula -

Most Lyme experts believe that Igenex does more accurate Lyme testing than Lap Corps or Quest or other mainstream labs. The primary antibody test that Igenex runs is still a Western blot, but the experts think their test is more sensitive.

My Lyme tests (and others - see below) through Quest were all negative. My tests through Igenex (which cost me a total of $600 out-of-pocket) showed a single reactive band (CDC requires something like 4-5 specific bands to be reactive for an official Lyme diagnosis). However, the Lyme specialist I saw agreed I definitely have Lyme because of my symptoms (especially sudden-onset, severe joint pain) and because doxycycline worked to clear up my symptoms. That is the bottom line for many Lyme experts because of the unreliability of all Lyme tests - if the patient responds positively to doxycycline, then it is almost certainly Lyme.

One other thing to consider - Lyme disease is only one of about a half-dozen tick-borne infections that can cause symptoms similar to CFS. Each infection requires a different treatment.

So, there are two things you can do:

1 - Ask your doctor to test you for all the so-called Lyme co-infections and get another Western blot - the results may be different than the first time. Also, ask the lab to "report all bands" on the Lyme test, so your doctor gets more information than just positive or negative.

2 - If your symptoms indicate Lyme (with or without a positive test result), try 1 month of doxycycline (you may need to see a Lyme expert for this - not all doctors will do this). If you respond to doxy (typical response if you have Lyme would be to feel better the first few days, then much worse for awhile), then you almost certainly have Lyme. If there's no change in your symptoms or only minor change (doxycycline is not only an antibiotic but also an anti-inflammatory, so you might feel a bit better if you don't have Lyme), then it's probably not Lyme.

For more information, read the information at:

and download the diagnosis and treatment guidelines on the website.

Hope that helps - it's a very complex and confusing illness, especially when trying to differentiate it from CFS!


Paula said...

Thanks Sue! The only band I had come up was 41 IGG (i'm still learning all this jargon!) I think I'll have to seek out a LLMD and get thorough testing. I live on the east coast and it's like and epidemic out here.

I appreciate your response - there is so much to learn and it can be very intimidating. This is not for the "weak of heart"

Happy health in 2009 for all of us!!

Luke S said...

I had two western blots, a PCR, and a lumbar puncture (spinal tap) all came back negative, the only thing that came back positive was the Igenex test.

My labcorp western blot showed the IgG P18 band present and IgM P41 present. The other Lyme test listed on the labcorp results is a “Lyme IgG/ IgM Ab” which was at a <0.91 level, negative.

I also had a Quest western blog a month and a half after I started Omnicef to treat lyme. Here are the results:
B.Burgdorferi 18 kD (IgG) reactive
B.Burgdorferi 41 kD (IgG) reactive
All else was negative.

I felt a lot better for about a month after treatment and now I am starting to get worse so I know the treatment is killing off the Lyme or similar tick born disease. The link I posted above is a trailer of a documentary that talks all about how messed up the system is for testing and treatment. I still do not understand a lot there is to know about the Disease, most of my symptoms are neurological so it is hard for me to think enough to do research at this point.

Your doctor also may retest you later in treatment. After you have been on antibiotics for sometime the antibodies are sometimes detectable in a blood test. I am glad to hear you are feeling better but do not get discouraged if you start to feel worse. That is a good sign that the treatment is working.