It's the prettiest November I remember having in a long time--hues of dark red, gold, green outside my window. Blue skies. The Connecticut PANDAS/PANS conference takes place in a few days and I'm thrilled about it--happy to have helped prepare for it, excited to see friends who will be there. We celebrated my birthday and my husband's birthday with the kids...my birthday, yep. There's a story for you. I can tell you right now that there's a happy ending.
I took a half day off work so I could see my Lyme doctor (who is in the next state--about 35/40 minutes away.) But let's back-track. I took my daughter to the gas station where we purchased our flavored decaf coffees. My daughter told the manager that it was my birthday and he (friendly guy that he is) gave us the coffees for free. What a simple yet great way to start the day! Then I met my godmother for lunch before the doctor appointment. Another birthday plus as she's one of my favorite people in all the world.
I got to the doctor, had to wait about half an hour, then was ushered into the office only for him to take a phone call. He was very annoyed at the nurse to whom he was trying to advise over the phone. I thought, "I shouldn't be hearing this." Then, on to me. And another phone call to the same nurse. Then, back to me. I mentioned that it was my birthday (usually I don't, but hey, he was my doctor!) He said, "My condolences." I looked at him in shock. "For getting older," he explained. Well, what's the alternative, I thought.
I tried to explain to him that my Lyme symptoms got worse once a month, that there's a hormonal link, that while I have had absolutely NO anxiety attacks since treating for Bartonella, I'm having a lot of pain in my right hip. Also, I'm ALWAYS tired. I live by the Spoon Theory (I only have so many spoons...that is energy per day and when I use them up, all goes kaput.) He questioned whether I had filled a prescription for Plaquenil--well, yeah, of course! and he called Walgreens to confirm. I didn't know where any of this was going.
Then he turned to me and said those words I'll always remember, even with Lyme brain: "I don't mean to offend you, but I can't treat you anymore."
Say what? Huh?
He went on to say that he doesn't want to treat Lyme anymore anyway and he's cutting down on his Lyme patients. Stifling back my tears, I asked, "Well, why didn't you just let me know before I took a half day off work to come here?" (And yet, in the back of my mind, I knew I would never erase the birthday walk and lunch I had with my godmother.)
"I didn't know then. But you're not getting better."
He then added, "I knew you'd take this the wrong way."
Needless to say, I didn't leave a copay.
Here's the good news. I'm a patient of the immunologist who treats my kids (he's a PANDAS expert.) In fact, he is the one who had given me the Igenex test that found Lyme; well, really, he found Lyme in the whole family. I happened to have an appointment with him the following week for the kids. I took one of the spots for myself.
He switched me from Biaxin to Doxycycline. He explained that the Doxy could also hit other co-infections like erhlichia and anaplasma. I started right away and have definitely been herxing and going up slowly. No anxiety attacks. I'm still on Bactrim. And something is working.
This weekend, in the cold, I went for a 17 mile bicycle ride--and it was wonderful! I felt energetic! I breathed in that brisk air, enjoyed the colors, chatted with my friend and husband, could have done more. Of course, I was completely tired and headachy at night, but that's OK! I can feel a change in me and it's just the beginning.
Lyme is strange. I can feel really OK for a while, then every symptom seems to hit--queasiness and dizziness, headache and joint pain. It's so Lyme that I know it's nothing else.
But I think the most important thing I feel right now is optimism. I realize how downcast I was feeling, especially when I could only manage a 9-mile bike ride a few weeks ago. When I only had 5 spoons for each day. And I know that doxycycline is making a difference.
My previous Lyme doctor was knowledgeable. He went by Horowitz's protocol. When I first began seeing him, I believed that I was allergic to most antibiotics. We started with herbals. I'm sorry to say that some of my symptoms have actually gotten worse while in treatment, while some have dissipated. I do not regret treating the Lyme Disease, though. It was taking over my life anyway. But I was totally devastated after being fired by my first Lyme doctor--for about 24 hours.
It's a darn good time to have hope again. My son is herxing from Rifampin. We have to treat the Bartonella in him and he's got to get through this herx to the other side. I think that Bart = PANDAS symptoms, at least for him. My daughter's Lyme symptoms are hitting so hard. She was supposed to be our "well" child; the Lyme is overtaking her schooling and learning as well as her day-to-day life. My house is a mess (and I'm sitting here, at almost 10:00 on Veteran's Day, writing, besides my still-sleeping son who crept into our bed last night.)
But I'm planning a small bicycle ride with my husband today. I will work on report cards and prepare for parent/teacher conferences. And fold laundry. And get papers ready for a doctor's appointment and more. Or at least do as much as I can before my energy gives out.
There will be another day. I WILL get my old (youngish) self back. And I'll be doing my 25-30 mile bike rides again. Fast.