First Lyme Symptom Poll

[renschwa]

Helllo everyone-

I wanted to do a poll to ask this question but I couldn't figure out how to set it up, so jackie if you can tell me how that would be great. But in the meantime, this is my story/question:

The other day I was at my monthly LLMD appt and there was a urgent knock at the door by one of the fellow docs in the practice. My LLMD excused herself and the doc says, can you come with me, I need your expert opinion. Turns out a patient had a huge bulls eye. And as I sat there waiting I was thinking to myself if only I had seen (or even had) the bullseye then the past 6 months of my life would have been so different, and much much less stressful b/c then I would known for certain that all my funky sytmpoms are in fact lyme. I actually found myself so jealous of this person and even thought to myself I know that person likely has no idea how lucky they are to have caught this so soon. Though I did hear my LLMD say it's a good thing you came in today and we saw this now.  

But anyway, this got me thinking... For those of us that saw no bullseye and have gone through hell like many of us on here have- we saw no rash, have all kinds of funky symptoms, have gone through many different tests/diagnoses/myriads of doctors, and go through the "is it really lyme or something else roller coaster".... I'm just wondering when you think back (if you can remember) what was your very first symptom? Was it just one symptoms at first or an avalanche of symptoms?

For me, it was just one symtpom at first. A sore calf (left). Ended up at the ER b/c friend said it could be a clot. It wasn't but glad I had it checked. It got better in a day or 2. Then like 3 days later I started with random tingling and prickley sensations in my hands/feet/scalp. Felt better for a couple weeks after that but then all hell broke loose- one wierd thing after another for 6 months now.

I figured I'd post this now as I feel like a lyme spokes person these days. I'm telling all my friends that tick season is going full force where we live.. If you have any funky sypmtoms get a lyme western blot and ask for it b/c docs don't always do it!!!!

The good thing about hearing other stories is you know what to look for not only for yourself buy for your loved ones as well... and it reminds us all here that we are not fighting this disease alone. So I 'd be really interested in hearing your story (I'm sure others will too)! Look forward to your posts.

[renschwa]

Thanks for all of your comments! The left calf thing is interesting, Jackie. And like Wonko, and maybe others, my symptoms kicked in at a time of a great stress. That might be another interesting poll to see how many others experienced that... It's intweresting to hear the similarities and the differences in everyone's story.

Best of luck to you bcb1200, let us know how you are doing...

[bcb1200]

Hi guys:

I just got diagnosed.  Igenex came back positive in IgM for 6 bands (23/25, 83, 93, 31, and 34).   I have no idea how long I have had it.  I have always felt fine, more or less.

Last november I remember having what I thought was a GI bug.  I was dizzy, weak, sweating, and "volatile".  It lasted about a day with lingering effects for about a week.  I chalked it up to my Gerd / Reflux.

I early Feb, I had the same thing, this time for a day.  Then was better.  But 4 days later, started feeling a bit woozy like I was on something.   LIke I was drunk.  This would come and go with some flushing, sweating, anxiety, vision issues over the next 3 weeks.

Met with an ENT who thought it was Reflux / gallbladder and schedule a upper endoscopy and gallbladder exam.  Then when to a Chiro thinking it was stress. Adjusted my back, shoulders, neck and jaw.  Felt great for 4 days, then had a second adjustment.  THen felt worse...much like I do now.  I had right calf pain for 3-4 days around this time and thought it was odd given I hadn't exercised.  I also had right thigh pain.

Worse dizziness, much more like 24/7.    Then flew to the west coast. After I returned, my ears went haywire.  THey would go quiet and ring loudly for a few minutes.  Then my vision seemed weird, like I was drunk and looking through a fishbowl.  I would get nausus watching TV and using the computer.  I was very photophobic.  I did 10 days of amoxicillin thinking an ear infection.   Nausea / vision  / hearing improved, but ears still ring and click a lot.  Neck is stiff.

Today, I mainly have night sweats (mild / moderate), ringing, full ears, drunk / fishbowl vision, eye floaters, things moving in my periphery, brain fog, and fatigue.  I also have gastritis (as confirmed by the upper endoscopy.)

My ENT diagnosed me as having Labyrinthitis.   I am better than I was 4-6 weeks ago, but not well yet.  Then I just got my IGENEX results which show positive IgM.  So it seems this whole thing is LYme.  I thought it could be TMJ, Neck, Ear, Brain, etc.  I have had more tests than you can imagine.

I have not yet started treatment, but will most likely start next week.  Trying to find a LLMD who kick this agressively and hard.

[JackieCalifornia]

Well, that makes three of us with the left calf cramp thing.  I know, it's a 50/50 chance it will be the left calf in anyone who has this rotten ailment, but there's something to do another poll on sometime when we run out of other stuff to do.  Ha.

[wonko]

It'd be tough for me to reply in a poll format so I'll just state my case here.

I'm in the no recollection of rash or bite club, with more negative Lyme tests than positive.

To be honest, I'm not sure when or how my symptoms started.  I knew something was horribly wrong when I developed gradually worsening neuro symptoms in spring '07.  However, since long before that I've had bizarre (but not disabling) symptoms of unknown etiology.  I always swept them under the rugs of stress and non-ideal life style choices, but given my response to treatment I've come to realize I was sick for longer than I knew.  

I don't think my situation is that uncommon.  My Lyme seems to have been smoldering below the radar for years before it opportunistically took over during a time of stress and life change.  

This is part of why I am pursuing long-term treatment.  I am fearful that if I don't do all I can to fully eradicate these bugs, they will make another comeback later in my life.  I know it may not be possible to totally beat it, and there is no guarantee against relapse or reinfection, but darned if I won't try.

My "best guess" for when I got infected is summer of '02.  I became acutely ill as a student, and put off seeking medical help hoping to gut it out.  I eventually went to health services and they diagnosed me with strep, ear infections, and bronchitis.  I was placed on several antibiotics and seemed to fully recover.  But it was the following fall that I started to have strange sharp leg pains and other weird issues.  

Over the next several years, I had occasional ear aches that landed me back at student health.  They weren't sure what it was, but often gave me a week's worth of abx in case of ear infection.  I suspect those occasional hits kept my illness under wraps.

Spring of '07 I was finishing up school and preparing to move.  I again got very sick, and it was again thought to be a combination of standard infections (sinuses, ears, bronchitis).  This time, I never really got better from the illness, and started to have neurological problems that insidiously escalated, beginning the nightmarish part of the "roller coaster."

I hate not knowing when or how I got this, as it can be maddening.  I also wonder if, like JackieCalifornia, I was reinfected, as my 2nd "event" was in the summer months.  Though I moved, it was from one endemic area to another (Philly to DC).

It was not my first symptom, but I also had calf pain.  In my case, it felt like just part of my left calf muscle was contracting very tightly.  I could even feel a little ball inside of the muscle.  Nothing would relax it out.  That happened after the roller coaster was well in motion, and has gotten better with treatment.

By the time I got to an LLMD, I ran the gambit of symptoms, including neuro/cog issues, heart palpitations, vision problems, joint problems, major fatigue, and some whacky but non-specific tests (brain lesions, inflammation markers, super-low vitamin D, ...).  I'm doing much better now, though still symptomatic.  I've been treating for 1.5+ years.

Interesting idea for a post, certainly got me talking!

[JackieCalifornia]

To post a poll, click on the big green 'Post A Question' button up at the top of the page just above where your question begins.  Then there is a place to click either post a question or post a poll.

My first symptom was feeling awful, like the flu, but no stomach effects.  Fatigued, confused, crabby, ill.  I went downhill from there to very bad muscle aches and pains, heart irregularities, poor sleep, more confusion, poor memory, ineffective thought process, generally irritable.

I turned out to have Lyme and babesiosis, and I think it was the babs that was giving me the worst symptoms, but not sure.  Lyme would be the one affecting heart and limb muscles.  I may also have gotten Lyme some years before, but a very mild case that my MDs couldn't figure out, so I was just living with it.  Then the (re-)infection (with no bite or tick seen) really laid me low.