*This post was written in 2013 with everything recreated from my forum posts, Facebook updates and written notes I had from doctor’s visits.

I was really nervous about this appointment. I didn’t know what to expect and I had also read horror stories of other patients trying to get treatment from mainstream doctors. They insisted you needed an LLMD (Lyme Literate Medical Doctor), which I think is a term the Lyme community developed. I was determined to at least try to get my treatment covered by insurance since I had read many stories about the thousands of dollars (sometimes hundreds of thousands) that people had spent trying to be “cured”.

My Original Western Blot

When I arrived at her office, I signed in and was quickly taken back to an exam room. I actually ended up seeing the NP instead of the doctor (that seems to be a pattern with me – or maybe it’s just how medical care is headed in general). She reviewed my test results from the doctor who diagnosed me with Lyme. She mentioned that I was CDC positive.

Because of the Under Our Skin video (discussed here) and all of my reading, I knew a CDC positive diagnosis was somewhat rare in the Lyme community. In fact, not being CDC positive is one of the reasons people have a hard time finding someone to treat it or getting insurance coverage for it. There is MUCH controversy over being CDC positive. Many who have Lyme and many LLMDs do not agree with the CDC interpretation of a positive test. They believe the CDC guidelines are too strict and lead to too many false negatives.

Regardless, mine was. With the western blot test I had done, it shows IGM and IGG bands. IGM means it is an active infection and IGG means it could be active or it could indicate a previous infection. IGG basically shows the memory of your immune system. One important distinction I learned about is the test only shows antibodies against the disease – they don’t show the disease itself. This is again why some people have a hard time getting a diagnosis. If your body isn’t producing the antibodies, the test won’t show positive even if you have an active infection. This is also why there’s no test to show when the Lyme has been adequately treated.

In my case, I showed positive for IGM bands 23 and 41. To be positive by CDC standards, you must show positive for 2 of the 3 IGM bands. Mine did. Also, band 23 is specific to Lyme and only shows when Lyme is present. I also had IGG band 41 come back positive as well. I later learned that IGG bands typically don’t show until about 3 months or so after the infection begins. This can indicate a chronic infection, whereas IGM bands are typically seen as acute.

The problem with this is that in most diseases, the IGM bands only show when the infection is first active and then go away or change to IGG. However, with Lyme, the protein surfaces of the Lyme have the ability to change to attempt to hide themselves from the immune system. Because the surface is always changing, the immune system consistently sees it as a new infection and therefore IGM bands can stay positive for much longer than they would in a typical infection. Not having IGM bands and only have IGG doesn’t mean that you don’t have an active infection. But if you have IGM, you definitely have an active infection. Biology 101 is now over. 🙂

Back to the Appointment

She reviewed my list of symptoms along with all of my other blood tests and said it certainly looks like I do have Lyme. She said it was important that I was also tested for all coinfections as well. At this point, I was just beginning to learn about coinfections. Basically, when the tick transmits Lyme, it can also transmit a host of other infections as well. That’s why it’s referred to as nature’s dirty little needle.

So we would need to do more blood tests to rule out other infections as well. From what I’ve read, it’s rather rare to only have Lyme. The testing is quite extensive. I felt like I was donating blood instead of having tests run when they came in to draw it.

I asked about the treatment I was currently doing as well as the supplements I was taking. She agreed with all of it but did say they typically start with 200mg of Doxy (I was on 400mg). She said if my stomach could handle it, I should stick with the higher dosage.

She also talked about the future and their treatment philosophy. Unlike typical LLMDs, she sticks with prescription antibiotics by mouth or by a PICC line (IV line that runs from your arm to just above your heart). She only uses a small variety of antibiotics and typically doesn’t combine antibiotics unless there is a coinfection present.

I was adamantly against the PICC line and was determined I could do this on oral antibiotics. But knowing that option was there was nice as well. She also told me that they only do 12 weeks of oral antibiotics or 12 weeks of IV antibiotics or a combination of both (12 weeks each). In my head, I was thinking I should take full advantage of this and make it through 12 weeks of oral and then request IVs (if necessary) so I could get the full benefit of both. I later found out these strict guidelines, which caused me a tremendous amount of stress, weren’t true but that’s a later post.

I opted to stay with the oral and reserve the IV meds for possible later use, hoping I would never have to go that far with treatment.

Then she talked to me about insurance coverage. She said most insurance plans would cover oral antibiotics without issue. However, IV antibiotics were typically only covered for six weeks. Then if you wanted to continue, it was out of pocket. I tucked that little terrifying fact away in the back of my head and, at the same time, decided to switch to this office for my treatment of Lyme disease.

One, I felt more comfortable with conventional antibiotics versus herbal treatments. If it was unproven as far as remission rates, I at least wanted to be taking medications that had been studied and approved for safety (not knocking herbals, I’m just not as familiar with them).

Two, I needed this to be covered by insurance. I could swing a monthly doctor’s appointment or two but if it got to the point of IVs, I knew we couldn’t afford to pay thousands of dollars a week for medicine.

I was told I would receive a phone call with the results the following week and I would need to follow up every two weeks with their office.