My Appointment was So-So - Not Sure What to Think

[Hope75]

So, I went to my neuro appt. after my MRI.  First, the MRI wasn't there, then they called over and had it faxed.  The lesion I have had for years is still there, with no new lesions.  My neuro then said he doesn't think I have "neuro" Lyme.  He said he cannot dispute my CDC positive results, however.  He put me through some typical reflex tests and then felt some of the muscles in my calves, buttocks, etc. and he concluded that he thought my neuropathy was from myofascial pain.  I disagreed, but, he still wrote me a script for minocycline (sp?) and said he would treat for six weeks, then reasses, treat for six more, then reasses.  He said this would keep him out of hot water.  Since I disagreed with the "not neuro" dx - he is sending me for an EEG.  A friend of mine with Lyme had this EEG and it was wildly abnormal.  He then dx her with neuro Lyme and I assume he will do the same with me depending on the outcome of my EEG.  

With all that said, I think he is chickening out a little, but just a little.  So, I am going to go through some OT treatments he wants me to do next month and give a good college try, just to rule it out.  I would love for the OT to work - but I'd bet $ that it absolutely will not.

I haven't had time to even sit down and write you guys....sorry about that.  I am traveling alot lately and working my behind off, so I will try to keep in touch.  I haven't even had time to fill the minocycline until today!  It will be interesting to see how I feel on the abx!

In the meantime, I am toying with the idea of making an appt. with that LLMD that will cost an arm and a leg......

[Hope75]

(Jason) I was CDC positive for IgM and positive ELISA.  I guess the EEG would make him feel better about treating me if it's abnormal.  

I'm glad to hear that minocycline is good for neuro Lyme.  What about the great oral abx vs. IV abx debate though?  I am taking 100mg 2x per day.  Sound about right?

[cindy903]

Good news on the MRI! That's a relief. I don't know how far you are from an LLMD, but the minocycline is supposed to be excellent for neuro-Lyme.

Good luck and keep us posted.

[jason80]

Glad to hear there is no change to MRI. I've read a lot of folks who had EEG for neuro symptoms (Lyme or otherwise), and I find it rare that anyone has an abnormal result. If so, it is a very significant finding and provides much better potential for accurate dx. I think this is also the first time that I read someone had a neuro Lyme dx from an EEG. I guess bloodwork was also positive?

[skarey]

Hope,
  I'm glad to hear that your mri hasn't changed.  I hope you see results with the abx.  I agree with making the appt with the LLMD.  You are very lucky to have a neuro that you are close with though and that is working with you.  That must be nice to have one on your side :)

   Thanks for keeping us updated!

[SOONERMOM]

I would urge you to make that appointment with the LLMD because it could take months to get it, it did for me.  That way, if you do your 6 week course and the neuro decides that is "enough" you would at least have something to turn to.  You can always cancel your appointment.....but it is very difficult to get into one with short notice.

I know how frustrating this whole process can be and I am so sorry we are all stuck with the imperfect science that causes most doctors to not want to treat us.  It will be interesting to see how long your neuro will agree to treat you.  I would say he gets bonus points for doing  it at all!  I had an Infectious Disease doctor tell me that it would be too controversial to treat me (even with a CDC positive WB..10 total positive bands IgM & IgG combined) because neurological lyme disease doesn't exist in my state.  He is actually a "nice" and "good" doctor....the whole thing seems completely crazy to me.

Anyway, I hope  you will get some positive results from the  mino!!  Keep us  updated.

[wonko]

I can't relate to your experience with the neuro, since I was only able to discuss Lyme with my LLMD.  I am glad to read that your MRI is stable.

I started on mino, I took it for about a month by itself.  It did cause my symptoms to shift enough that I felt I was on the right track.  However, I seemed to plateau on it, getting only very incomplete relief.  I had much bigger Herx reactions from other antibiotics added to my regimen.

What OT tx does he have in mind?  If any succeed, please share!  

Did he talk to you about taking a probiotic?  If you may be on an extended course of antibiotics, it's important to take care of your gut.