Almost every day I ask myself: Am I doing the right thing treatment-wise? Is this really Lyme? What's the balance between pushing through treatment and staying sane?
The problem, of course, is that there are no answers to these questions. No good tests exist for Lyme. The diagnosis is primarily a clinical one. The symptoms are so varied that it's easy to fit them into the Lyme 'box'. We have no way to evaluate progress. No scans or blood work to indicate that the spirochete load is lower.
This makes 'resting and healing' difficult for me, when I'm not even sure if I've made the best or the right decision some days.
Earlier this week, I had an appointment with my GI doctor, who I think is one of the smartest, careful, and compassionate doctors I have ever worked with. I was there for a follow-up appointment regarding the GI attacks I had been having over the summer.
After my port was inserted it got difficult to keep up blogging on all of the specialists I was seeing, but I did see a neurologist who agreed with Dr. GI's diagnosis of abdominal migraines. If I go into detail about what the heck these are and how we got to this conclusion and why in the world I'm n of 1 when it comes to getting these, this post would get way too long, so I'll save it! Plus, just keep your fingers crossed that I continue to stay free of any GI attacks/abdominal migraines and won't even need to write about it!
What I will say that is through the entire process of trying to find a diagnosis for the GI attacks, my doctor looked so thoroughly at so many possibilities. He looked into just about anything that could cause ANS symptoms or stomach pain.
When he entered the exam room this week, he apologized for making me come in for an appointment given that I had not had anymore significant problems with the abdominal migraines since our last visit. He encouraged me instead to email or to call him anytime for follow-up questions.
Little did he know that what he was about to say to me during our appointment was going to reassure me so much.
Once we got up to date on some small questions I had, I brought up the Lyme treatment.
I have a very big medical team now. Within that team is a mix of doctors who believe in chronic Lyme and those who do not.
While this can be frustrating at times for me because it makes me doubt myself, the 'intellectual tension' is a positive. It means that I have doctors looking at various aspects of the picture, and unwilling to attribute every symptom I'm having to the ANS or Lyme basket. In truth, if used incorrectly, these can be wastebasket diagnoses.
Dr. GI is one who is skeptical of the Lyme treatment. He's also searched high and low for other explanations for my symptoms. I respect him tremendously as not only a GI doctor, but an internist too. Since we had no emergent crises for a change, I had time to say to him:
"If this isn't Lyme, what is it?"
His response? We just don't know. But...
Nothing showed up in any of the tests he ran. I had an endoscopy, x-rays, a gastric emptying study, 24-hour urine studies for heavy metals and several other rare conditions, a cortisol test for Addison's disease, celiac testing, mono testing, and a zillion other blood tests for rare and unusual things.
Like with every other diagnosis I've had to date, we made a diagnosis of exclusion: abdominal migraines.
So, Dr. GI told me that while he is unsure about the Lyme diagnosis, he feels that the antibiotics are worth a try. He is careful to state that his biggest concern is that I know the risks of long term antibiotics and that I know that the treatment might not work.
It's Dr. Lyme's responsibility to evaluate at what point we do or do not think the IVs are working and whether to continue (which Dr. Lyme does for sure!).
He commented on my insightful emails and careful approach to decisions. His concern is for those who might see Lyme on the internet and decide that it 'fits' them and seek treatment without ruling out alternative diagnoses.
In medicine, as he said, we still know so little. We make decisions every day that are based on our best guess. We don't always have the testing we need to make a definitive decision. Lyme disease, he said, is somewhat of an orphan disease.
He recognizes how long I've been sick and how many avenues I've pursued.
At the end of our discussion, he said: "If you're asking me what I think, I think you're doing the right thing."
As he left the room, he again told me to email him any time with questions and apologized for me having to make a trip to the doctor.
He had no idea what he had just done for me. I still don't have an answer. I still don't know if this will work. But it sure does help knowing that my decisions are respected and validated by the doctors I respect the most.
As ever, thank you for reading. I have the best readers! :)
Photos: The crocuses in our yard! I am excited that I've been able to take some pictures again lately. I'd love, love, love to know which one is your favorite! I want to print one! :)