I haven't talked much about my last appointment in Idaho, because it's been really difficult to face the outcome. As you may remember, I had emailed the doctor a month ago to tell him that my pain has not gotten any better. He said to come in right away, as it wasn't normal to be feeling that way. So I flew over a few days before Easter weekend, for the obligatory 10 minute visit.
Most Lymestop patients equate the treatment to peeling an onion, one layer at a time. I was hopeful that after my first few visits, and his work on ridding my body of the most apparent infections, that it would be easier for him to see what has been causing my pain, and that he could treat it more efficiently this time around. I've been so certain that the pain is Lyme related, that I didn't really expect the appointment to go any other way.
We started by talking about my pain levels. Every time I tell him it's nearly a 10 out of 10 at all times, he acts surprised and amazed - as though he's hearing it for the first time. I swear doctors don't even take the time to brush up on patient charts before visits anymore.
Anyway, he tested....and tested....and tested. I could tell he was coming up with nothing before he even opened his mouth. Baffled, bewildered, and apologetic for not being able to help me.
I know my pain is incredibly difficult to describe to people, and thus, hard for anyone to understand or comprehend. But I swear, doctors continue to tune me out when I try. It's like they have this little bubble of knowledge about pain, and anything outside of it, they dismiss as something else. All of a sudden, my appointment turned into the same kind of visit I've had with a multitude of other back professionals. He had me bend backwards, and since the pain felt worse when I did, he immediately resolved that it must be a disc issue....and get this - that I should go to a chiropractor.
Now I understand he doesn't know my complete history, but do you think I haven't done that doc? One year, prior to my Lyme diagnosis, I spent $2,000 alone on special chiropractic adjustments. Been there, done that, hundreds of times over.
I told him I've had SO many images done over the years to figure this out. X-rays, CT scans, MRI's galore. Yet no one can find anything significant enough to explain what's going on.
He suggested I see a neurologist, which is one step I haven't made yet, and left with a resolve to look into. Yet I still have questions, and the more I think about it - the more I second guess his opinion.
Why did he tell me in my 2nd visit that Bartonella had settled into my back post-surgery? I had been so sure he was right because it made perfect sense. This specific pain didn't start until after I had gone under the knife. I had previously been told by another LLMD that she thought these marks on my back looked exactly like Bart. I showed Dr. S. the marks and he assuredly told me it wasn't Bartonella because they weren't red. I countered with a handful of questions, yet he couldn't really give me any definitive answers.
The thing I keep coming back to is that I had these EXACT marks on my stomach the first 4 years of this horrible journey. It had been so incredibly distended and painful, and the white squiggly lines were just as prominent as they are now. Of course I'd have pictures to show you, but one of my doctors conveniently lost them! Grrr. Eventually, one of my naturopaths helped heal most of my stomach issues, and the lines went away.
I decided to take to one of my Lyme forums last week, to have other patients weigh in on the issue. So many of them told me my back looked like a Bartonella infection. One gal sent me the picture on the left - I mean, how can you compare it to my back, and not think it's the same thing? There were also a lot of patients who told me, from experience, that the marks from this infection CAN show up white rather than red. So now I'm really rethinking this neurologist thing. Because the last thing I want to do is waste more time and money on doctor visits and imaging, all to be told that nothing can be found.
I know what you're thinking - these forums are full of patients, not doctors - what do they know? But it also probably goes without saying, that in my last 8+ years of doctor hunting, I have yet to find a medical professional who I have complete faith in - especially when it comes to Lyme. In fact, I have probably learned more from other Lyme patients, than any one doctor. Because most of them have seen just as many doctors as I have, and also have to succumb to just as much research online as I do. We are forced to become our own doctors in a way, and piece together all the things that we learn over time. Even I feel like I know more about Lyme than a lot of the doctors I meet.
I definitely know it's a nerve thing. Not only is my pain getting worse, but the numbness in my hands and feet is too - especially when I lie or sit down. The question is, is it caused by an infection, or by something else that, so far, everyone has missed in my images?
In the end, I feel like I'm back at square one with this whole pain thing. I feel lost, confused, and without hope once again. I have no idea which direction to take. I am so damn tired of this struggle, and I'm tired of trying to figure it out on my own. I wish I could just go to sleep (sleep, what is that?) and have it all disappear when I wake up. That could happen, right?
