Neuropathy Anyone?

One of the symptoms that I have had for over 4 years is an internal "buzzing" feeling. It usually occurs in the early morning hours and I can feel it travel through my body and especially in my abdomen. Over the past several months I was treated with different abx for persistent joint pain and horrible pain in the soles of my feet (was figuring bart). A few months back I was diagnosed with Raynaud's. I started Zithromax a month ago (500 mg/day) and since that time the pins and needles, stabbing, aching pain in both feet and both hands has been relentless. I am assuming, based on symptoms, that I am now dealing with neuropathy. Is anyone dealing with this issue? I really cannot stand doctors and am trying to decide whether to make an apt with a neurologist. I cannot take lyrica, gabapentin, etc because of adverse reactions. Any advice would be greatly appreciated.

Hey VB,

I've had peripheral neuropathy off and on for over seven years now. At this point, based on all the reading I've done and some of my most pronounced symptoms, my hunch is that bartonella is the primary culprit.

In case it is useful, here's a brief timeline of my progression:

7-10 years ago: Occasional tingling in my feet, feet/legs fell asleep more often than in the past; during drives of over one hour, my left leg often would lose all feeling and go "dead." That was enough trouble to get me to relocate to the city where I work so that I can walk instead of driving.

5 years ago: While on a long walk, I had a severe vertigo attack that came and went quickly, but which was accompanied by EXTREME nerve pain--electrical shock/pins and needles--that persisted for several days. I had to call in sick because it was too painful to walk. about a year later, my left leg went dead while walking down a very long flight of stairs.

3-4 years ago: Began to get both an internal "buzzing" (not visible to the eye), usually behind the knee, as well as fasciculations that roam from place to place. I've occasionally had them all my life in my right lower eyelid; over the past few years, they've popped up on my upper and lower arms, my entire hamstrings, the tops of my feet, thighs and behind my knees. There appears to be no rhyme or reason. When I presented with the fasciculations to neurologists, their first reaction was to test for ALS (thank God I don't have that). The fasciculations/twitching are visible to the eye and I've taken video of them to show people as evidence I'm not totally insane. :) (I was beginning to question this before the Lyme diagnosis this year--really!) Both the buzzing and twitching can be maddening when they last for hours or days...for me, it's sort of like hiccups. No big deal unless they decide to overstay their "welcome."

2-3 years ago: More of the same, but increased sensitivity to hot and cold water--sometimes very painful.

Everything has come and gone regularly on and off all these years, with new quirks coming on as described above. The foot and leg pain/numbness/falling asleep actually waned for the most part over the past year...until I began antibiotics. Within a week, I was getting the electrical shock sensations again; *however* unlike before I began treatment, the peripheral neuropathy (so far, anyway) is always short lived: it happens for 2-10 minutes or so and then subsides. One major lasting symptom is that my left leg is actually partially numb--it's really creepy when I shower or brush against something that I can't feel anything at all on the inside lower half of my left leg. I am hoping that will subside.

OK, that was yet another very long post...my excuse, as always, is that I tend toward 'overcommunicating' in case my experiences may relate to yours, to ease any surprises that could be coming your way. I think I've had Lyme/bartonella for half my lifetime now, so I'd guess I have a pretty advanced case and may have more symptoms than some.

One last note: since neuropathy is often CNS related, here's list of other neuro issues I've had that you may want to be attentive to/wary of/prepared for, just in case (I hope not!):

-Unilateral hearing loss and tinnitus that comes and goes (technically mine has been diagnosed as Meniere's disease because of the pattern of hearing loss--mid-tones--but my LLMD suspects in my case it's actually due to Lyme)
-Occasional numbness and tingling anywhere on the left side of my body, including my face
-Cluster headaches (THANK GOD I've only had one cluster, which is unusual, only during the month of November 2012...I don't know if I would survive this as a chronic condition. There is no worse pain.)
-Vision anomalies: "foggy" (not exactly blurry, but more unfocused) vision, occasional double vision, sometimes sudden loss of night vision, and I always see halos around light sources in the dark; a neuro-ophthalmologist said I have a blurry optic disc nerve margin, which is usually concerning but he thinks mine is congenital (now I am guessing it's Lyme, of course), as well as cataracts, which he said would also have to be inexplicably congenital given my relatively young age (33 at the time of diagnosis)