I’m 2 weeks into treatment as of yesterday.

The Results

Today, I received a phone call from the doctor’s office about my test results for coinfections. The new test showed that the Lyme disease appears to be more chronic in nature rather than acute (bands 41 and 66). But because it was done while already taking antibiotics, it may not be as accurate. She couldn’t explain why the test was so different from the one from earlier in the month other than the fact that I was already on antibiotics and it was a different lab.

She said she wasn’t so much concerned about the Lyme bands because we knew I was positive from my first test. It was more about the other possible infections. Luckily, I was negative for all coinfections, which was a relief but at the same time, a little unnerving. It seems everyone has at least one coinfection. I’m typically not the one to defy the odds! But at this point, I was ready to take any positive news!

But good grief at the expense…..those blood tests were over $2,000! SO glad my insurance covered them.

First Herx

The week of Thanksgiving, when I took off from work, kicked my butt in a big way. I pretty much did nothing other than lay on the couch. I quickly learned that I can NOT take Doxy without eating first and I can NOT lay down within 30 minutes of taking it. I also got to experience the herxheimer reaction (or herx for short) for the first time. It’s not fun, let me tell you. Take all of my symptoms and multiply by 100 and then add on a few more – that’s basically what a herx is.

And the nausea, oh my gosh. It was horrible. I feel like my body is starting to adjust to the medication now and the herx symptoms have definitely improved. But wow, for that week, I basically couldn’t even look at food.

A Little Sign

I also got confirmation that I made the right decision to switch doctors. On Saturday, the nausea was so bad, I was afraid I wasn’t going to be able to keep my antibiotics down. I actually called the pharmacy to ask how long I have to keep from throwing up without losing the benefits of the medication (two hours, if you’re wondering).

I tried to call the integrative doctor since she was the one who actually prescribed the doxy to me to get something for the nausea. Her answering service informed me that I had to give them a credit card number before they would pass along the information and the call back would be $45-$90. Um, no thank you. I called the infectious disease doctor’s answering service and within an hour, she had called in Zofran for me (for free!).

Medication Overview

Along with the Doxy and the probiotics, I’m also taking quite a few supplements. I also finally gave in and started taking the Cortef for my adrenals. Because I switched from the integrative medicine doctor to the infectious disease doctor for my Lyme treatment, I also have to wait for that January appointment to roll around to follow up on my thyroid and adrenals treatment (the appointment I made back in September with a doctor who is covered by my insurance).

Have I mentioned that I despise taking pills? My gag reflex is incredibly strong and it doesn’t take much at all. Now that I’m taking 24 pills a day, you can imagine how much fun that is for me.

I had to take a list of all of my medications and supplements to the pharmacist so he could help me work out a schedule. Some have to be taken on an empty stomach, some with food, some twice a day, some away from others….I was going crazy trying to figure it all out. So I went to the counter and begged for help. He graciously obliged and I bought multiple pill containers to help me keep it all straight for what should be taken when.

Next Check-Up

I go back to the doctor on the 7th for a check-up. She’s expecting to see major improvement or we’re going to discuss moving to IV antibiotics. Now that I’ve had time to think about that, I want to stay as far away from it as I can. At the very least, I want to be able to make it until after the second week of January because I have to go to a conference in Vegas on January 6th and I don’t want to look like a medical freak with luggage full of medical supplies if I have a PICC line. So that’s my goal now – delay until after the 9th of January.

The Tally…

Oh and just for “fun”, I thought I’d start keeping up with my medical expenses. This doesn’t include pharmacy charges or supplements and goes back to the first doctor’s visit when I started trying to get diagnosed in August.

As of today, the total billed is $6,767.80. My insurance has covered all but $1,257.

*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.

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

My First Dose of Medication

I started my new antibiotics the morning after my diagnosis. She prescribed 400mg of Doxycycline per day in two divided doses. That is 2-4 times what a normal dose of Doxy is so I was warned to be prepared for nausea. At the same time I started taking it, I was also told to take a general probiotic as well as saccharomyces boulardii to guard against c. diff, a potentially fatal infection.

The doctor also warned me about having a herxheimer reaction from the medication. Basically, your body can get overloaded from the die-off that occurs as the medication starts to work. This can cause a huge increase in symptoms and can also mimic allergic reactions. I read online that with oral medications, it can take up to four days for it to happen the first time, although some people have a reaction within a few hours of the first dose. So I scheduled off for the next week figuring it would hit about the time the weekend rolled around.

Under Our Skin

After researching all day after getting the phone call and finding a doctor for a second opinion, I continually kept seeing mention of a video called Under Our Skin. You can watch it for free on Hulu here. It is a documentary about multiple people with Lyme disease along with the research behind the disease, the treatments available and, most of all, the controversy that surrounds it.

I laid in bed and watched it on my iPad with tears streaming down my face. It’s a great documentary in the fact that it is filled to the brim with information about the disease and everything people encounter with it. But it’s absolutely terrifying to watch it knowing you have the disease that they’re saying has no proven treatment, no cure and a medical field who largely won’t acknowledge its existence.

My husband looked over at me and asked if I was sure I needed to be watching it when the diagnosis was so fresh. I was determined to make it through the entire video and I did. As I’m writing this, it is actually May of 2013 and I have yet to be able to bring myself to watch it again.

I do believe it is a must see documentary, regardless of whether you have Lyme. If you do have it, just be prepared. People react in different ways. When I shared my reactions in online forums, I received responses that people found it inspirational and an eye opener but not scary. Maybe it was because I watched it the same day I was hit with the news but it was too overwhelming for me.