Friday, April 09, 2010

Lyme Log: Gold Star Phone Consult

I had a 'gold star' phone consult with Dr. Lyme yesterday. Dr. Lyme puts those little gold star stickers on letters or med lists that patients send to him in preparation for phone consults. Of course, I work very hard to make sure I get gold stars!

For those of you who get bored with the medical details, I've tried to make sure to add in some pretty pictures. :)

My blood work continues to be 'spot on', with no indications that we cannot move ahead with increasing the Rocephin. We would like to do this as quickly as possible, treating me 'as fully as possible' but in a 'measured way'. As long as I can tolerate the treatment the message was: "Go for it!"

There are several reasons to push ahead with the Rocephin. This is the first time that Dr. Lyme has mentioned the many obstacles that could get in the way of me being able to continue treatment.

My greatest fear is that my insurance will refuse to continue paying for the Rocephin. Also, my port is doing well and staying infection-free at this point so we want to use while we have it. Another issue that can arise is pressure on the PCP treating the person with Chronic Lyme. Apparently, the PCP can be pressured or questioned as to their reasoning for keeping a patient on long-term antibiotics. Lastly, while I am a huge supporter of the health-care reform, it's likely to not be beneficial for people like me, and other Chronic Lyme patients. Formularies and outcome-based decisions don't work well with Chronic Lyme.

I am very, very fortunate to be able to get Rocephin as a treatment. Just today, the main topic on my Lyme support group was several people who had either tried to get Rocephin and been denied, or had only been able to receive it for one to three months. I try not to live in fear that this treatment could be taken away from me, but I am very aware of the possibility.

The other major issue at hand is my continued struggle with depression and anxiety. Dr. Lyme was fantastic about tackling this issue.

First, mood issues are very common in Chronic Lyme. As I mentioned in my earlier blog they can be caused by the Lyme itself, the treatment, or the sadness surrounding having a chronic illness.

Dr. Lyme asked me what made me sad. I told him briefly that I just really felt like I was missing out on all of the things I so wanted in life: marriage, being a mom, working, etc. He said that, of course, our goal is to get me to a place where I can experience and have the things that I want.

In the meantime, though, he said: "You have a lot to be sad about. It's important that you let yourself feel those feelings." How validating!

Still, he felt that we may be able to work with the depression and anxiety better, but it is not his area of expertise. As he says: "I like to stick to what I know." I really appreciate that he knows when to say something is out of his area of expertise. He said: "Why suffer if you don't have to?"

He recommended a doctor who specializes in neuropsych lyme. While I have a great psychiatrist here locally, he's completely stumped as to how to help me because of my sensitivity to medications. He also doesn't have the knowledge to know how Lyme might be affecting me.

If all works out with Dr. Neuropsych Lyme, I will hopefully be able to see him in the next couple of months. Also, I will be making a trip to see Dr. Lyme. Hopefully, Dr. Neuropsych Lyme will be willing to coordinate care with my local psychiatrist once I meet with him.

I had really been in a freak out mode before I spoke with Dr. Lyme yesterday. I am much calmer now. I was starting to freak out that maybe my Lyme wouldn't respond to treatment. Clearly, Dr. Lyme has not given up on me and he's still working to give me as much of my life back as possible.

And while I'm not at all looking forward to the travel to these various appointments, I feel that they are the right thing to do.

I think it will be tremendously helpful to get a second opinion from another Lyme specialist, especially one that Dr. Lyme works with. It will give me the comfort of having another person look at my case, give input and problem solve. Every Lyme specialist views things differently. Given the complexity of my case, I feel that having another brain thinking about how to approach my treatment will be a huge asset.

Right now, despite my fears, I feel incredibly grateful to be held in such caring hands.

Thanks for caring, reading, and listening!



Photos: The forsythia in our yard.


Katherine said...

So thankful you have access to the treatment that may help you turn the corner, and doctors who are willing to keep trying and believe they can get you better. Also so thankful the port has been working so well with no problems.

I'm so sorry you've been struggling with so much sadness. I understand why. So hard.

Finally, I am so thankful to have you as my friend!

Katherine said...

Hmm, I just tried to leave a comment and it didn't work.

I am so thankful you have access to a drug that may help you turn the corner, and doctors who think they can help, and the port is working like it should.

I am so sorry that you are experiencing so much sadness. It is normal, but that doesn't make it easy at all.

Finally, I am so glad that you are my friend.