During the last several months, I've been searching for a new care team and new ways of looking at my illness. When I started the Rocephin, I embarked on a journey that I chose as the best possible treatment for me at that time. However, as the year progressed and I found that I wasn't progressing, I began to want something different. What I didn't know.
I began to feel too fragmented managing so many different specialists. Each of them looked at one little piece of the puzzle, but no one other than Dr. ANS was trying to put the entire puzzle together. When I decided to stop the Rocephin, I had reached a breaking point. I felt that I couldn't go through any more days feeling that awful with no breaks. I was emotionally and spiritually breaking down.
I felt lost in the system for the first time in a long time. No one was seeing my whole being. No one was tuning into how thin my 'mental toughness' was wearing. I also had a constant feeling that we were 'missing something'.
Now, a year after starting the Rocephin, I'm readying to take a new approach to my illness, to take a new leap of faith, and to make the next best possible decision I can make with the information I have available. Because really, that's the best anyone can do. Am I disappointed in my lack of improvement on the Rocephin? Yes. Big time.
Last week, Dad and I travelled to see a new doctor who specializes in complex chronic illness, as well as misdiagnosed and undiagnosed conditions. Um, this would be me? His approach is a holistic one. Patients are more than their illness. Quality of life during treatment matters. The doctor works with several nurse practitioners as a team. He uses a variety of methods from traditional medications to homeopathy to meditation to nutrition (I'm very excited about this part) to encourage the body to heal.
To prepare for the appointment, I spent several weeks assembling ALL of my medical records from the past twelve years! In addition I had to fill out a 15 page assessment form. This is the most thorough and detailed review anyone has ever done of my condition. Apparently my medical records were more than 1000 pages, which was close to being one of the biggest files they had ever received. Yikes.
Before I arrived for the appointment, the medical team met to discuss my case, review pertinent medical records, and think about possible diagnoses. Originally, I was scheduled to meet with one of the nurse practitioners, but because my case was so complex, I actually met with the doctor. Even the doctor teased that he wondered how I had been accepted as a patient because I was SO complex.
I've searched endlessly for a new doctor to look at my case, but it is way more difficult than it sounds like it might be! This new doctor works closely with Dr. ANS, so this is how I found him. Since Dr. ANS has been and continues to be my point guard and most trusted health-care provider, I was excited about this new doctor. Once I had an appointment with this new doctor I felt like I was finally moving forward.
What shall I call this new doctor? Dr. Complex? Not because he is complex, but because he focuses on solving complex puzzles like mine!
Dr. Complex spent two and half hours with me. After that two and half hours I felt that he had a better understanding of my whole being and all of my symptoms than any doctor other than Dr. ANS ever has. He was able to incorporate all of my symptoms into his diagnosis, some of which no one has ever acknowledged before!
Dr. Complex still feels that this is Lyme disease, but more broadly defines it as a vector-borne illness. Likely I have many other things going one besides Lyme, including Bartonella and Babesia which are other tick-borne/vector-borne illnesses. No other alternative diagnoses came up in the pre-appointment meeting or after meeting with me.
I think there was a part of me that hoped the diagnosis wouldn't be Lyme disease. That there would be something more easily 'fixed' or 'cured'.
During the antibiotic treatment, I've been concerned about the effects it had on the rest of my body. Part of the reason I stopped the Rocephin was that I felt my body couldn't take the assault any longer.
The first step in treatment with Dr. Complex will be focusing on all of the collateral damage from so many antibiotics. We will first focus on repairing my immune system and gut, helping with detox, lymph drainage, allergies and other areas. We need to prepare my body to eventually (and hopefully soon), continue on antibiotics to treat the infections themselves.
Dr. Complex has started me on several supplements (one at a time, so that I know I am tolerating them), in addition to homeopathy.
As we begin this new journey, only time will tell if this approach is a good fit for me. Dr. Complex felt that I was an extremely complex case (which is still very hard to hear). "You're a very interesting case medically," he said, "But I'm sure you'd like to be interesting in a different way." He can't make me any promises. And if he did, I'd think he was full of hot air anyways.
What I like the most and what I've long been searching for is another doctor, beyond Dr. ANS, who can see the forest instead of just the trees. And Dr. Complex certainly does this.
The office is very structured, organized, and team-focused. The follow-up care even includes filling out a form before each visit, documenting your symptoms, response to treatments, etc. that is then discussed at the team meeting before your appointment.
I left with a very detailed, direct, and focused starting plan, including tests that I needed done and clear directions and descriptions of the treatments we are starting with. This is a big change from the way things have been previously, where I've often been left with a lot of information to sort through on my own and make my own decisions. It's great for me to be involved in my care, but not so great when I don't have adequate help making the decisions!
My biggest stuck point is supplements. They definitely make me nervous. That is the part I am processing right now. However, what I have done to my body already is probably no less risky than these supplements. I know that Dr. ANS would never endanger my health or refer me to a doctor he did not trust.
If I can trust and let go, I think that I have truly found two doctors who will hold me in the palm of their hands, do the best to get me better, continue to look at the forest and not just the trees, and artfully guide and direct my treatment.
I would really like to write another post about the appointment answering questions such as: why am I such a difficult case to treat? Why does Dr. Complex continue to believe this is a vector-borne illness? What exactly does he mean by vector-borne illness? Why is this illness so different in each person? What kinds of supplements am I taking?
When I am writing my posts I am usually wondering what questions my readers would ask. So, I'd like to know your questions about my treatment, my diagnoses, etc. to use in that post!! Ask away!
Blessings,
Emily
Photos: The purple beauty flower at the arboretum. (I think that is what it is called.) I took these photos for you Rachel!
4 comments:
Aw, purple pictures just for me. :) Thanks!
Thank you for sharing about your appointment. That's great that you have another doctor who is willing and able to look at the whole picture, and not just a tiny puzzle piece. I hope and pray that you will see some improvements with the new treatments.
I love beauty berry. We have a thriving specimen in our front yard that was a gift when we moved in...
I'm sorry you are such a complex mystery. 1000 pages, wow. It is frustrating how this condition takes different forms and levels of severity. Is there any other condition this extreme in variability? I was also told by a dr that my condition was likely vector-borne. This was before I was officially diagnosed with POTS. The dr knew I had lived in Africa--he felt I gotten something via livestock contact. I would also want to know more about why the dr thinks it is vector-borne. However, it does seem that many chronic problems are started by viral or other infections though--so it may be a good guess? But of course that doesn't mean that the condition is treated by treating the (past) infection...? There is so much we still do not understand. I'm glad this dr is willing to look at the whole picture. I can understand your reluctance to try supplements. But under the care of a dr you should be safe and cared for. It sounds like he has a lot of experience with these kinds of cases, and I do not believe that medical doctors prescribe supplements without support of research.
Not that I think you are/were asking for reassurance, but as a person who gets obsessed about Making The Right Choice (and then afterwards: Did I make the right choice? OMG what if it wasn't? What if...?), I feel I can speak with authority on these matters where you don't have enough data and are still expected to choose: you're doing great! And sometimes, there is no wrong choice. *hug*
Like Katherine, I'm also very curious to hear why he is sure you have a vector borne illness (I'm not questioning his opinion, just curious to hear his reasons!). It's interesting that no other potential diagnoses are being considered at this point.
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