I had my follow up visit with the LLMD today (Dr. J for any of you in Pennsylvania), and I'm positive for Lyme. Not CDC positive, but "lab I think I'm not supposed to name specifically" positive. (Also mono and CMV, neither of which I noticed having). I thought I'd post my test results here, since I know some of you know a ton about what these different bands refer to.
I was on 4g of Amoxicillin a day for the past month while waiting on test results. Since my urine test came back negative, my doctor thought it wouldn't be a bad idea to try a different abx. I'm starting 500 mg/day of Biaxin tomorrow.
Was this done at IgeneX Lab? It looks like it because they list more bands. Below is the breakdown of the Western Blot bands:
9 cross-reactive for Borrellia
12 specific for Bb
20 cross-reactive for Borrellia
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
Bands 31, 34, and 39 are Lyme specific bands and yours are either positive or IND. I believe this is signifcant.
Is your Biaxin dose 500 mg once or twice daily?
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Have you been tested for these?
Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.
It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.
Thanks for the band breakdown. I appears I have fancy, European Lyme
The testing was done through Igenex (I wasn't sure if they fell under the 'don't name specific websites/businesses' policy here). I got the Western Blot done through them, IgM and IgC, and the 3-day urine test (which was negative).
I checked the new prescription, it's two 500mg tablets a day, so 1g total. I know when I went to fill the Amoxicillin, the pharmacist was kind of concerned about the high amount, but didn't say anything about the new prescription. The doctor gave me a little sheet explaining herx reactions, and I've been lurking around reading tips on coping with them from this board. It's especially an issue since I do have to work, full time.
I haven't been tested for any co-infections yet, but I'm going to ask when I go back for my follow up appointment. I've been kind of lazy about the daily symptom logging, but I imagine that'll be helpful in determining whether a particular antibiotic is helping or not.
And thanks for the resources, I'll have to see if I can get that book for cheap online somewhere