2nd Opinion...

Sorry, long question and vent...
After over a year in treatment has anyone saught a 2nd opinion from a different "Specialist"?

I have been going to a very well-known lyme specialist for over a year. I know this disease is complicated, but I just feel like the practice has become factorized. For the amount of $ I pay, I get the same answers to all of my concerns: "its all nerves". I highly disagree with that, especially since I have no relief from certain pains, despite taking the max dose of the nerve med.

It seems that sometimes my protocol differs from what I'm told at the appointment, and does not reflect my concerns. For example having marked improvement in one area on specific meds, only to have that same issue return when the protocol was altered. But then not adjusted to address the return.

It's as if I'm not being heard. I believe for the most part they absolutely know what they are doing, but the quality control, attention to detail and inability to communicate outside of the appointment is starting to wear on me. Also, the method of communication keeps changing.

Also, most recently with respect to a specific med, I either got false info, uneducated info, or was just flat out lied to when a med dosage/delivery was changed. I felt (knew) it was wrong and even called to question if it was correct and got an answer 2-3 days later from someone telling me the prescribed rx and delivery method was correct and to take as prescribed. after checking with my other Doc (not lyme related), he agreed 100% that I was correct.

I should also point out that my "safety labs" continue to show highly out of range kidney functioning, but these seem to be ignored.

Sorry this was so long...I am paying a lot of money, drive 4 hours to get there, and feel more uncomfortable with every appointment. I do feel like I have improved somewhat, but some things have shifted or not improved at all and I'm concerned about permanent damage to other areas (due to treatment) that aren't being heard.

Problems is, now I don't know who I would see for a second opinion.

Post Edited (njfillet) : 6/8/2018 11:03:24 AM (GMT-6)

“Also, most recently with respect to a specific med, I either got false info, uneducated info, or was just flat out lied to when a med dosage/delivery was changed. I felt (knew) it was wrong and even called to question if it was correct and got an answer 2-3 days later from someone telling me the prescribed rx and delivery method was correct and to take as prescribed. after checking with my other Doc (not lyme related), he agreed 100% that I was correct. “

You do know that antibiotic dosages for some can be higher for Lyme and regular docs probably don’t know that?

Girlie I think you are right about where Im going.

She is a PA and I believe she's been there for a while. What you mentioned about Bart treatment is sort of what Im talking about. I was on Mepron just recently and then suddenly taken off, despite doing well on it. Now my protocol is basically the same as when I started, yet my symptoms are all over the place and my back pain has returned only now it's in also in my hips and it's excruciating.

I just don't know where I am (with respect to what's being treated) and I don't get real feedback. I told her about the back pain returning, even though I had previously told her about the back pain getting better at that protocol. I know it's partly my responsibility to ask questions, but I would think that for the amount of money people spend, they should be better at explaining things to people. Before going there I had no idea about the meds I was getting. I had to look them up and wonder "why am I taking this?" They keep saying it's aggressive treatment, yet I don't feel that way.

I feel like every visit is the same, same questions, same discussions. I also was a little put-off once when she said "every thing you're telling me...I've heard before". I'm sure it came out wrong, but it made me feel like just another patient complaining about the same stuff.

I have not seen Dr J either. My next appt is in August also, in person. My last one was phone, and that was the third time it was mentioned that things would get more aggressive, but I'm basically back to the beginning.

With respect to the medication...it was actually an anti-seizure med taken along with gabapentin. the dosage was adjusted from a total of 500 mg per day immediate release (split as 3x per day), adjusted to 200mg (1 per day) extended release. I should mention that I did not know the dosage until I received the actual schedule by mail a few days later). It was my understanding that 200mg xr would mean that the pill would deliver a stream of the med to total 200mg per day. That's the way all of my other XR meds have worked. I even looked it up on the med's website which explained clinicians how to switch over from IR to XR and my thought was correct.

I figured I'd ask my other doc, who is a Psychiatrist I've been seeing for about 15 years due to trauma related depression at that time. Despite my improvement our appointments progressed to a brief talk-therapy type situation. Anyway, he knows medication inside out, and this particular med is also prescribed for bi-polar disorder. First of all, he said that his max dose per day (for mood disorder) is primarily 400mg. Secondly, he confirmed my thought about the switch over, and that I should absolutely have been switched over to an equivalent dosage. Even if the intention was to reduce the dosage, he would never go from 500 to 200 just like that. So given all of the above, this made me more concerned. Especially since I even called to ask, and was told by the person that the PA said "a 200mg xr pill is equal to taking 200mg in the morning, 200mg in the afternoon, and 200mg at night"...exact words.

I'm just spending so much money and now unable to work in my position. I am considering requesting a 2nd opinion from the other Dr J which is in the vicinity.