Are neuro symptoms the last to go??

I have been in treatment for 6 months now. Many of my original symptoms (chest pain, shortness of breath, joint pain, headaches and fatigue) are gone, thenk goodness!!

I had hand tremors and intermittent foot numbness and tingling - these seem to come and go but have actually worsened the last few weeks. My LLMD had added mepron to my ceftin but the symptoms in my feet got so bad they took me off. Am now on ceftin and zithromax.

Am worried about the worsening neuro symptoms. Not sure if it's a herx or if something else is wrong.

LLMD recommended I see a neurologist just to make sure nothing else is wrong but can't get an appt til July

Thank you all for all of your support - there are so few people who understand Lyme so it's nice to know there are people out there who can help out when I have concerns

God Bless :)

My symptoms were 95% neuro from the get-go anyway. They are the longest to linger as well because of the neurotoxins circulating. PLUSm, I believe that the Lyme has clogged up your detox pathways SO LONG, that other toxins that have built up in your system have to be evacuated too (heavy metals, junk food, chemicals, etc.). You can seea neuorlogist but I seriously doubt there is anything "else" going on - it just takes time for the crap to slowly leave your system...keep detoxing and supporting glutathione...

I'm in the same boat - those neuro symptoms just don't want to quit! A lot of people say that the first symptoms are usually the last to go, that recovering is sort of the opposite process of getting sick - whatever that process was for you.

My neuro symptoms were the most frightening piece of the puzzle, as they had me thinking of all kinds of permanent, disabling conditions. There were about a dozen different symptoms including some pretty severe cognitive issues, but the one I used as the benchmark was my almost constant muscle twitches (fasciculations), mostly because they were outwardly visible to other people (and doctors) and it was really bizarre. I remember having a hard time holding a conversation because the other person was prone to stare at my twitching my collar bones, eyelids, etc... really unsettling.

After the 4th month on oral meds did nothing I got a PICC line put in and went on IV rocephin. There were a few truly odd episodes in the first few weeks on that treatment, like feeling icewater running down the back of my head and other dysesthesias (tastes, sounds and other sensations that do not match what you are experiencing), but somewhere between the 2nd and 3rd week of treatment the twitches just vanished. Almost all of the neuro and cognitive problems faded within that first month; it was amazing.

Rocephin does a fantastic job at crossing the blood-brain barrier and can be tremendously effective for neurological/cognitive symptoms. Even the IDSA will admit that their typical recommendation of oral doxy may be inadequate for cases with substantial neurological involvement and recommend up to 28 days of IV rocephin in some of these cases. That's not to suggest that you'll require a PICC, but its pretty well established that treating neuro symptoms can be more more complex and/or time consuming.