13 1/2 Years Later: What IS this?

Kwanzan Cherry Tree in our Yard.

As I recline here, listening to WDAV Davidson I feel anxious about writing an authentic post. Looking back at last year's posts, I see that I have not written an honest update since my What's In A Day post at the end of September. Today, as my hands rest on the keyboard, I'm hoping for the courage and energy to write about what has been going on medically, something I've blogged very little about over the past year. Last time I wrote in June we were Waiting for a Breakthrough. And we still are. I will do my best to relay what has transpired medically over the past few months.

All photos from early Spring 2011.

After our trip to Chincoteague (which I still haven't written about), we stopped to see Dr. Complex on our way home. The appointment marked one year since I started working with him. We continue to find ourselves in a state of 'an enormous status quo' as he would say and using the 'laws of the shotgun'. Dr. Complex says: "If I could find the source of the fire, I would be able to put it out instead of putting out all of these little fires."


We had an honest discussion about where I am six years after beginning treatment for Lyme disease and one year after working with him. I've never been a 'slam dunk' for Lyme disease. While I have some indicators of Lyme or some sort of infection, I also have markers that point to other, unknown, causes. For example, I have an elevated C-Reactive protein, which is not typical of Lyme OR non-specific CFS. I also have a strong positive for a rare Herpes virus (HHV-6) that has been found in many people with CFS and Lyme.  At this point treatment with anti-virals, while still used as a protocol by some, hasn't proven to be as promising as originally hoped. Over the past year we've seen some metabolic changes (getting my Vitamin D levels healthy) but nothing that has been reflected clinically.

What we know is that over the past six years my response to Lyme treatment has been limited.


Dr. Complex still believes strongly that my illness is vector-borne and infectious in nature, but we cannot identify the infectious agent. We agreed, though, to stop all of the antibiotics for a while to see how I do off of them. We need to see if they are of any value at this point. I am still doing other treatments to target inflammation, adrenal fatigue, sleep, etc. He continues to treat me based on the premise that, regardless of the cause, finding ways to improve my quality of life are important.

We agreed that the next best step would be for me contact Dr. ANS and ask him the following questions:

1. What if we stepped back from treating this as Lyme disease? What if, instead, we treated it strictly as ANS Dysfunction and CFS?

2. What other treatments might we try?

3. Would it be possible to see Dr. ANS in his clinic again (something I have not done since 2004, as we have communicated via email and phone since then--pages and pages and pages of emails!) For those of you reading this, it may seem odd that I have not seen Dr. ANS since 2004, but I am in constant contact with him and he is still my point guard on everything--from writing letters to other doctors and to the insurance company to keeping up with what is going on with all of my other doctors to emailing extensively with me re: any questions I may have.

Dr. ANS responded to my email with the following:

I doubt the answer will be found in trying to stabilize the ANS differently. In many ways, you are on a full-court press with the ANS anyway, and I suspect it will settle down only when we find something to more effectively treat the underlying cause of the problems.

He also graciously agreed to see me in clinic to see if anything popped out in the examination and discussion. In a little more than six weeks, we will be making a big trip to see both Dr. Complex and Dr. ANS in back to back appointments.

These conversations between Dr. ANS and Dr. Complex transpired between the end of October and the end of December. They have been intense and time-consuming, and much of them took place over the winter holidays. While I was trying to keep it together for the holidays, I was having these conversations with my doctors feeling completely overwhelmed.

I have always challenged and questioned my diagnoses from the beginning of getting sick, and I continued to do that throughout the past six years of my Lyme diagnosis. I haven't been a passive bystander in this process.

How can we be 13 1/2 years into me being sick and still not know what is really wrong? What does this mean for moving forward? Did I put myself through all of those Lyme treatments for nothing?

Dr. ANS and Dr. Complex are the two of the most engaged, responsive, smart, intuitive doctors I have met on my journey thus far. I've started to come out of my state of being completely shell-shocked by our collective lack of clues as to what is going on and where to go from here. Right now, I'm trying to put my fears and my questions in a little box where they will stay, contained, until I see both doctors in several weeks.

We certainly all felt that, as a team, we would be able to make progress this year. It's difficult to end yet another year with so many unknowns and a continued status quo in my health. I wrestle a great deal with how much energy I want to put into pursuing more treatments and options vs. an acceptance of what is (as people such as Laura Hillenbrand and Toni Bernard have done).

What is enough? How much is enough to try? In my years since getting sick I have tried over 100 medications or supplements, seen over 50 doctors, been through hundreds of tests, tried many other treatments such as diet, exercise, therapy and bodywork, and have a medical record over 1000 pages thick. I continue daily and weekly to use a combination of these tools. 

I will have to wait until my two appointments to see how Dr. ANS and Dr. Complex feel about what to do moving forward. I am not sure how to reconcile the differing points of view that either 1. we do not know the cause at all, or 2. it is infectious in nature, but we do not know what type of infection. I am sure we will hash this out extensively at my two appointments.

I am always baffled by the fact that we have these multi-system illnesses that leave people like me very, very sick and we are unable to identify what is making us so sick. 


So, if it seems I've fallen silent lately, I have. With no change on the health front, I'm a bit tired of sounding like a broken record. But I realize by not sharing what has been going on, I've left my friends and family in the dark as to what kind of treatments I have been trying (even if they haven't worked) and why we are making the decisions we are making. These medical conversations came in the midst of my grappling with several other difficult changes, transitions and questions.


At first I felt shell-shocked by the conversations I had with Dr. ANS and Dr. Complex over the past couple of months. I still keep replaying phrases like "an enormous status quo" and "laws of the shotgun" and "until we know a cause". I also keep thinking: "Thirteen and a half years and we are still up in the air?!" Being 'up in the air' is not my forte.


At this point, my job is to recognize that I have placed myself in the hands of two of the most capable, skilled, compassionate, passionate, dedicated, intuitive and creative doctors available to treat patients like me. While I need to continue to be my own best advocate, I also must recognize that the biggest part of my job was in finding these doctors. I know that they will both doggedly pursue answers and ways to help me. This makes me, in so many ways, one of the most fortunate of people with an illness like this. Still, it's not a fun place to be all of these years later.


Blessings,


Emily