Lyme Log: Trip To NY To See Dr. Lyme--The Report

“Wherever the art of medicine is loved, there is also a love of humanity.”

--Hippocrates--

On Tuesday and Wednesday of last week (April 21st and 22nd) Mom and I headed to NY to see Dr. Lyme.  I last saw him a year and a half ago, so it was definitely time for a face-to-face appointment.  Dr. Lyme has a poster in the exam room with the above quote by Hippocrates--and I do feel each time I am there that he and his staff care deeply for their patients and passionately about helping those of us with Lyme disease to live full lives.

All in all the trip went very well and very smoothly.  The travel is still very difficult for me and I'm still recuperating, but what a huge difference between this trip and the last time we went to see Dr. Lyme.  Last time Dad also went along.  We rented a larger car so that I could lie down flat in the back seat. I just remember being in so much pain the entire time and so weak it was difficult to make it to the bathrooms at the rest areas.

This time around I was able to do my own packing before the trip.  We were able to take Mom's car in which I reclined in the front seat. I was able to rest and nap on the way there and on the way home because my neck pain has improved so significantly.  The hardest part for me was the early mornings! That made for some very short nights! I've been making up for the lost sleep since getting home.  I also had a bad night at the hotel with low BP.  But otherwise, I think the travel went quite well.

Still, I'm always happy to be back in my own bed and have all of the things I need right nearby. Plus, I much prefer having Asher to snuggle with and not having to listen to Mom's snoring!

When we arrived at the office bright and early Wednesday morning (8 am!), Dr. Lyme came out to greet us.  When he saw me he said: "You look a hell of a lot better than last time you were here!" I laughed and teased him about his swearing. So, he edited the sentence to say 'heck' instead. I just looked at the picture of me with Dr. Lyme a year and a half ago and I guess I do look better now than I did then! I didn't get a picture of the two of us this time around as I had put him far enough behind schedule already!

Still, for him to be able to remember from a year and a half ago and notice a difference is certainly encouraging--especially after very little sleep, early in the morning, and with no make-up on. He did comment on my lovely dark under-eye circles during the physical exam. I don't remember a time since getting sick that I haven't had these? 

We had a great appointment. Here's the run down:

• Dr. Lyme feels very convinced that I do indeed have Lyme disease. 
• He did a thorough physical exam (which is good because I don't really have another doctor doing this at this point). Nothing remarkable on the exam.
• He did bloodwork to re-test for Lyme and Babesia as well as extensive bloodwork just to monitor other things such as thyroid function, Vitamin B12, etc. I'll get these results during our next phone consult.
• His overall sense is that I am making improvements, but I have a looooonnnnggg ways to go. 
• His goal is to get me independent from my parents. He kept saying that I was young and had my whole life ahead of me.
• He put all of the options for treating Lyme on the table.  He tends to be very conservative in his approach to treating Lyme. For me, this works well. He is open to me trying other types of treatments, including some of the alternative ones that Lyme doctors use.  I find all of the various treatments out there extremely overwhelming to make any sense of and I'd rather stick with more traditional avenues at this point. 
• He did bring up the possibility of more aggressive treatment in the form of IV antibiotics, specifically Rocefin. This would mean daily infusions as well as getting a port. It would mean making myself very, very sick.
• We looked at my current treatment regimen which leaves me with a LOT of room to ratchet up the doses of all four variables:  Bicillin, Zithromax, Plaquenil and Malarone. 

In the end, we decided to continue with the medications I am currently taking.  I will need to really bust my butt more and work at increasing all four variables more. For now we decided not to pursue the IV Rocefin, but I think that next time I go to see him I will get the allergy testing done for it and explore the possibility more.

I have to make myself sicker to get better and this is the message I really left with. If I want to get better I really need to be pushing it with the medications I am on.

While we've been redecorating, I haven't been pushing as hard to increase my medications. It's hard to want to make myself sicker when how I feel right now, while still crappy, is a hell of a lot better than I have felt in years. With spring here, the last place I want to be is sick in bed. At least I'll have a very, very pretty and restful room to heal in.

I am the type of person that wants to know that what I'm doing is the 'right' path or that I'm doing the 'right' thing to get better. The problem with treating Lyme disease is that it is such a crapshoot.  I don't know how one ever knows whether or not they are choosing the best treatment for them or not. We can only make the best decision with the information we have and go from there. It's hard to find a 'right' answer.

Is it possible that another antibiotic might work better for me? Might make me herx less? Or might make me heal more quickly? Yes. But all we have is trial and error. All we know is that with the combination therapy I am using right now I am moving forward. And we'll take that. Do I wish I wasn't such a turtle? Heck yes!

For the first nine years of my illness I researched obsessively and spent hours and hours communicating with other folks with dysautonomia.  Since my Lyme diagnosis, I've found it overwhelming to go on the Lyme boards or research all of the different ways different Lyme doctors treat Lyme disease.  When I try to sort through it all, I just feel like there is no way to really know what is going to work for each individual.  

I'm not sure I understand why I've been unable to immerse myself in researching Lyme the way I have all of my other illnesses. I feel like I need my precious non-herxing time to try to squeeze in a few joyful moments to remind me why I'm going through this treatment. I pretty much feel immersed in medical and health related issues all of the time as I balance managing so many co-morbid conditions.

The last thing I feel like doing is reading more about Lyme when I'm living it all of the time. Maybe it's ignorance or denial, or maybe it's just a leap of faith.  I trust Dr. Lyme and Dr. ANS. I'm moving forward, however slowly, right now. Treating Lyme was a leap of faith from the day we made the decision to do so, and it continues to be a leap of faith, an act of faith, and trial of faith. 

Right now, I surround myself with a couple of other folks also struggling with Lyme and faithfully read the fabulous Under Our Skin blog and that is enough for me right now. That may change in the future.

The trip and the visit really could not have gone more smoothly.  It's just that when I come home from a such a visit, I feel pretty overwhelmed by the road ahead. It's a lot to process and it pulls me out of my 'one day at a time' mode of operation and starts me thinking about what the future might look like and how the heck this ever became my life.  That's a bad, bad place for me to go! 

I had to skip my bicillin shot in order to take the trip to NY, so instead I've been increasing the Zithromax and Plaquenil since we got home. So onward and upward it is with the Lyme meds.

I know many of you have been waiting for 'the scoop' on the trip, so now you have it! 

Blessings,

Emily

Photos:  The sign to Dr. Lyme's office. It's so nice to go into a setting that isn't so 'medical' looking!; The yard around the house where Dr. Lyme's office is. The trees are amazing!; Me outside of the office. Take the picture fast Mom b/c I can't stand here much longer!; The PA welcome center. I'm always so happy to be back in PA!