mudshark said...
I've been lurking on the forum for a bit and getting lots of great info, but I'm on overload now with it all trying to figure out if I may have Lyme. I'm thinking yes, but ELISA, Babesia and another test were negative. I know they are unreliable. I primarily had symptoms of peripheral neuropathy in feet/lower legs, but am beginning to link other symptoms to a possible lyme infection. I have a few questions that hopefully folks will respond to.
Before I get to those I'll share some info. I live in western MA and since 2005 I've pulled between 200-250 ticks off of me (deer + dog variety). I'm diligent about checking myself at the end of the day. Several latch on before I find them, but I know I got them that day and never worried. But, there have been a few over the years I wasn't sure if it had been 24 or 48 hours before I found them. I used to have a doxy script and would take 1 if suspicious, but my doc won't do that anymore. Anyway, I've been bitten and certainly removed many the wrong way before I knew how. Never had the rash.
In 2013-14 I started having peripheral neuropathy symptoms - odd sensations on soles of feet, calf twitching, lower legs cramps/spasms and some other funky skin sensations on lower legs. I was diagnosed with BFS and a few weeks later it all went away. Completely. about 8 months ago I started dealing with ball of foot pain in one foot. The foot pain got so bad I went to a foot doctor. Right about that time (3 years on from 2014) all the funky neuropathy stuff came back, but worse. Add to that now intermittent weak rubbery legs at time, odd arm sensations like the nerve in the shoulder is irritated, restless leg and exercise intolerance. All this stuff comes and goes. I've also got positional tremors going on in my hands, disturbed sleep, and irritable bladder symptoms. And oh yeah frequent headaches and alcohol intolerance that started a few months ago. Recent EMG testing on my lower legs showed some mild axonal neuropathy (which I've read lyme causes).
I have seen a homeopathic doc who has me on a regimen for what he thinks is a "intracellular parasitic infection", but he is only reading that there is inflammation. I don't seem to be getting worse, but not really getting better with his regimen (homeopathic, NAC, boron, and Eve Primrose Oil).
Finally, and one reason I lean towards having lyme, is I tried adding some herbals to my daily routine (cat's claw, japanese knotweed, and skullcap) and starting having an increase in shakiness and anxiety-type stuff. This happened the next day after trying it and worse the 2nd day. Not sure if it was the herbs or a herx thing, but I stopped them and things settled down.
Anyway I've got a lot more to learn and here are my questions, Sorry for the long post.
1. What are the odds of me not having lyme or a co-infection with so much tick exposure?
2. I know it affects people differently, but has anyone ever had lyme present this way?
3. If this is lyme I've had it for a while. Is it worth even trying short-term antibiotics at this point?
4. Buhner's or some other herbal protocol the best route?
Welcome mudshark!
With the tick exposure and your symptoms, it's looking like you have LD.
Lyme symptoms can come and go, wax and wane, yes.
No, short term abx (a few weeks or less) won't be much use since you would have chronic Lyme.
You can do abx or herbals or a combo of both.
Whichever you choose, it won't be a quick fix..you need to dig in your heels, as it will be many months to years before you are in remission.
The good news is you are being proactive and getting started.
If you want to do a reasonable priced test with a lab that specializes in tick-born disease testing, you can do a Lyme WB IgM and IgG for $210.
If you want to find a LLMD, we can help with that.
Start a new thread:"Looking for LLMD in ________" and fill in the blank.
In addition to members recommendations, you can also email me and I will check my last of LLMD's and send you names if I have some for your
location.