I’m not even sure what to think or what to say at this point. While it was certainly in the back of my head that this day could be coming soon (especially after I pissed her off when asking about cysts), I wasn’t expecting this today. She caught me completely off guard.

I went in today and it seemed it would be like any other appointment. The nurse assured me she had my blood test results this time so there would be no more sticking me! And then the doctor came in. She said well, your tests look good so you’re done with treatment! I don’t even think I responded when she said that – I just sat there with my mouth hanging open.

This is the moment I’ve been dreading since I found out about all of the controversy surrounding Lyme. The moment when my doctor would say “see ya” even though I was still having symptoms. Once I realized what was happening, I started firing off questions. I asked her what happened to treating for 3-6 months and she said my blood tests showed it wasn’t necessary, which is complete BS as there is no test that shows when Lyme is gone.

I asked to see my results and she gave them to me. I was only showing positive for IgG band 41, which could indicate a past or current infection (I know this, she didn’t say it). She said I was cured. I asked why I was still having symptoms if the bacteria was all gone and she said it was because of inflammation. I looked down at my results and noticed my SED rate was 4. So I asked why my SED rate was so low if my symptoms were due to inflammation. The she said symptoms can take months to years (yes, with an “s” on years) to go away and I just need to be patient.

At this point, I was starting to get mad but I was still in shock that this was actually happening. I told her I was scared and I didn’t want to stop treatment if I was still having symptoms. I reiterated again that I thought I was suppose to be treated until I didn’t have symptoms anymore and she just kept saying my treatment was over. She actually told me to do puzzle books to help my neurological symptoms.

PUZZLE BOOKS.

I’ve just had almost $90,000 worth of treatments and now you’re telling me I can be cured by doing puzzle books? WHAT?!

She told me to follow up in a few months if I wanted to. I asked her what I was suppose to do if symptoms come back in a big way when I stop medication and she said to just take it again for 2-3 weeks if I flared up. Well, being that I flare up every 25 days or so, when exactly will I not be taking medication?

I guess I’ll stop for good when I run out. I think I have enough refills left to keep me at 400mg for another two months. Then what?

I don’t know what to do. I don’t know where to turn. Everything I’ve read and every patient I’ve talked to has said to treat for two months beyond symptoms or with the same time period with zero improvement after throwing everything at it (which I haven’t).

How can she just drop me like that? She’s left me with no where to turn. What happens when I’m out of medication if I’m not better? I’ve read stories of people who have ended up using a cane or bedridden or in a wheelchair. People have died – not from the Lyme itself but from the complications from all the damage it’s done.

And she just dropped me. See you later. Good luck in life. Dropped me.

I held it together until I got back to my desk at work. Someone came over to ask me how the appointment went and I just lost it. I broke down in tears and just cried. I’m terrified of what this is going to mean for my future. What is this going to do to my family? How are we going to find another doctor? And if we can find one, how are we going to be able to pay for it plus the rest of my treatment?

I feel so alone and so abandoned. I just don’t understand how someone who took an oath to do no harm can just drop a patient in the middle of treatment. It was less than three weeks ago when I had my worst day ever since treatment started. And now I’m suddenly cured?

I told her about my reaction to gluten and she said it’s probably Lyme related. I said well it’s gotten much worse in the past few weeks so if I’m cured, why is it getting worse? She just shrugged and said it would take time.

I don’t know what I’m going to do now. I’ve posted on several Lyme groups asking for opinions and recommendations for other doctors but I know I won’t find someone else who will take insurance. But I can’t stop treatment. I can’t end up like these people who have to go on disability because they can’t work any longer. I can’t lose the progress I’ve made because my treatment was ended too early.

But I also can’t put my family through all of this either. And I certainly can’t take everything we have financially to try to pay for treatment.

I just feel helpless.