Notices
General Cycling Discussion Have a cycling related question or comment that doesn't fit in one of the other specialty forums? Drop on in and post in here! When possible, please select the forum above that most fits your post!

Lymes disease

Old 07-11-10, 11:14 AM
  #1  
Senior Member
Thread Starter
 
Metieval's Avatar
 
Join Date: Jul 2005
Location: Ohio
Posts: 2,857

Bikes: Road bike, Hybrid, Gravel, Drop bar SS, hard tail MTB

Mentioned: 7 Post(s)
Tagged: 0 Thread(s)
Quoted: 1218 Post(s)
Liked 298 Times in 214 Posts
Lymes disease

I posted this under a a tick forum in Mountain Biking, But Wanted to get it out there.

Lymes Disease!

It is serious business!

There is a bit of information out there... I don't know which is best.

I do know the earlier one catches it, the better they will fare. Unlike me. While my story may be a bad one...there are worse, there are those that will be permanently damaged or worse, paralyzed.

The fact that I am up an about and posting on the forum again is (I think) a good sign. I just hope I don't stay scatter brained for the rest of my life.... but for now I have an excuse.

It is long winded, and possibly hard to read and I am sorry... I'd just like to see more people informed or made aware of a growing problem Disease illness (bacteria) across North America that can wreck and destroy lives.

Anyways on with the long story of what could happen to those unaware....

I was active, physically fit, alert, some what witty, had good memory, was smart enough to figure stuff out.... and ever single bit of that went away.

I was camping Western PA, Got a spider bite on my left ankle. Within the day It turned brown then black, it had a red circle around it nice skin and then rash. My ankle swelled up so that I couldn't see ankle bone. My first thought was brown recluse. Medics at campground said PA didn't have brown recluses, but If it got worse see a doctor. Little did I know then What a bulls eye rash meant. I came home researched recluse bites and found out that a small percentage of them turn into the skin decay thing. at that point the swelling had gone down so I blew it off as no big deal.


The following is a mix of looking back with 20/20 of what the last 4 years have been like for me. a Total nightmare!

The original nausea that followed I don't remember, I might have blamed it on irritable bowl, or not eating right. The first year, I do know that I started to ride a lot less. Didn't really at the time think about it, might have blamed it on just being busy? But I also unknowingly at the time lost interest in many things. My bicycling, my remote control hobby, my time in the SCA (medieval reenactment). Joints was sore, muscles was sore (again made excuses of not stretching enough, or worked too hard). Although I first noticed it in my left shoulder blade. Stiff neck, out of place neck... Went to chiropractor..and for the first time it didn't help? puzzling. off hand comment to the chiropractor at that time was it felt weird different, when he adjusted me. we both just said hmm.
Then I started seeing massage therapist, once a week. then 2x, then 3x 1 hour sessions deep tissue and she couldn't get the knots out. At that time (this all in first year) I was still riding, I knew I stretched legs- calves. One day from sitting, I got up to walk, and both calve muscles locked up on me. Like a painless charley horse.... almost made me trip and fall, but then as fast as it happened, it went away. I brought it up to the massage therapist and asked if maybe it was a medical condition, but neither of us could come up with an answer. After 2 months of massage lots of $$ eventually it was bearable but not solved ( my shoulder). Looking back to that year, I realized I had also called in sick quite a few days. Way more than I remembered.

going into 2nd year Spring Time:

called in sick quite a bit more, Left work early often, and sometimes just calling in to say that I'd be hour tardy. and then Boom like a switch I was in bed for 6 weeks. absolutely drained. It was to the point of not even caring...I didn't have the energy to even care. Didn't answer phone... I was seriously in lalala land. Finally had a bit of energy, white as a sheet..I struggled to the Doctors office. He said I had mono/epstein bar, and slight amount of protein in my urine. So I maybe worked part time that year, always blaming the epsetin bar. Chances of an adult getting epstein bar 1 in a million? I didn't know that just took doctors word for it. Same year in the fall... I couldn't breath. I went to same doctor and he said Pneumonia 2-3 more days I'd be in the hospital. Go get some x-rays at another place. I didn't catch it right then or did but didn't think much of it at the time, but they took chest x-rays.... came out told me I was looking good and they would send my x-rays to my doctor. WHOAH? wait..... ummm looking good? 2-3 days later I'd be in hospital? Now I know Lymes disease is the mimicker of all diseases. so it does makes sense.

Again looking back through that second year I was forgetful, I'd do things and couldn't remember doing them. Or I'd say I'd do things, and then just never do them. Lucky for me I have/had a very caring boss/friend. I'd even forget how to do simple things at work. I averaged a 99% grade in math in high school and also in college. that year I totally flunked my tax return filings. I made simple math mistakes at work, I made bank deposit slip errors.

at this time I knew something wasn't quite right.... yet I was enough out of it. That I didn't really catch on. My life and world was crumbling around me, but I was clueless.

Going into the third year, now it was no riding, no remote control hobby, no computer gaming, no SCA, and working less than part time hours. I might be out a week at a time no energy. then boom full energy but a brain fog that was like a wicked drunk. Ok see another doctor.... this one wanted to blame bad teeth blood infection, even though blood test showed nothing.

My boss was still covering me with Ins and then the Ins. said "no go" I wasn't working full time. Now I lost my health Ins. See another doctor, this one says catscan... it comes back normal. I am a total mess, can't really make choices on my own, no control. No will. no enregy. most the time I couldn't think. attention span of about 20 seconds. I couldn't see straight enough or focus enough to be able to read... I knew something was seriously wrong with me, but no clue what was wrong. No Insurance. Already blew my savings on doctors that didn't have any answers.
finally my Dad walks in on me, shakes me out of a slumber... says he is paying and I am going to see a doctor...I was like whats the point they know nothing? I agreed to see a dermatologist because I had a cyst on the back of my head. They can't get me in for 2 months.... so they take me to their doctor. She thinks it is my thyroids. I just rolled my eyes. I demanded to see a dermatologist, that doctor pulled some strings and got me an appointment 2 weeks out.

That dermatologist checked moles etc, said they all looked good, looked at the cyst and said no way that would make me feel like I was feeling, but he could do out patient surgery and remove it $3500, no ins. and I was broke. But then he said it sounded like I have Lymes disease have I ever been tested? what in the heck is lymes disease? I got to thinking about it, and remembered the spider bite.

Back to the Doctor that wanted to check my thyroids... that doctor said lymes disease, no way.

I go home beat.... I basically didn't even care anymore. I was like what ever, eventually somethings gonna give, I'll end up in hospital and then they'll know.

I had people telling me to go to doctors anyways, I argued I already have a stack of bills I can't pay, I can't go to a doctor knowing I can't pay. My boss was telling me to go to the state. I was like what will they do for me? he said then that he'd fire me, or lay me off, or release me, or what ever terminology he had to use to get me help.

Finally my sister in law drags me out of the house, state says no medical I am single male, with no dependents. But they can give me food stamps. Same thing for rent assistance etc... I don't qualify go to SS.

I apply for disability, and SS denies me because lymes disease doesn't qualify me as being disabled. Yes at this point we know it is LD, because my mom sprang the $500 to get my blood sent to a lab in California.

this year my 4th year in...

I haven't paid rent in 6 months now.
I am a mess. I have no clue if this post is even readable.

Recently I sold my truck to pay the state tax that went from owing $300 to $500 penalties fines, fees, interest .... I needed money!! Sold the truck, and bought a cheap car plus paid a few bills. that money went through my checking account, and the state saw it and cut me off of food stamps.

I still have no energy, bad brain fogs, some weeks bad leg swelling,

Oh side track...... to make matters worse. The LD testing lab reported me to Ohio disease w/e. they called me up asking me what is Lymes disease, where did I get it, when did I get it. I am like why are they asking me what it is???? the lady tells me over the phone they have no other reports in this county of lymes disease.

Anyways outside of word of mouth, that this machine (a rife machine) works to kill lymes disease I have no treatment, I have no check up doctor appointments to monitor lymes or my heart kidney liver etc. My Mom talked my grandpa into buying this machine for me to use. And he also buys me supplements to support/strengthen such things as my liver/kidneys immune system.

back to the side track, the lady from ohio disease center calls me back 5 min after hanging up first time, and says she was reading up on lymes disease and says if I am not I need to be seeing a heart specialist and have my heart monitored. (It is a good thing I bicycled as much as I did aye?)

So as of today I have lymes disease, I've lost everything, but a cheap car, and my 2 bicycles. I have $40 to my name ( yeah I sold a chest I made/crafted for $100 woots).

my health is as unpredictable as it can get... and when the food in the kitchen runs out....that is it.

Lymes disease is not a joke

For a single middle aged male of 37 the state is no help to me.

I made $7000 one year
then I got $2700 in unemployment +$1000 charity
This year I've received $500 charity + the $100 (chest charity)

All said and done......... and have lost everything... I'd jump on my bike ride when I can, lay in a ditch or on a sidewalk for 3 days to a week or whatever it was until I could ride another mile just to get the word out of what lymes disease is. the tell tale signs of it.

Okay I haven't lost everything exactly, I still have my faith in God. And for what a mess the last 4 years have been, I haven't starved yet, and I still have a roof over my head.

For those of you that have been able to read all that to the end......thank you for your ear.

And please be careful, and be warned of what lymes disease is, and what it can do. There is hundreds of horror stories out there, and many more untold horror stories of lymes disease.
Metieval is offline  
Old 07-11-10, 11:49 AM
  #2  
Older than dirt
 
CCrew's Avatar
 
Join Date: May 2008
Location: Winchester, VA
Posts: 5,342

Bikes: Too darn many.. latest count is 11

Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Likes: 0
Liked 2 Times in 2 Posts
It's Lyme... not Lymes.

Been there done that. Went to the Dr. Took the antibiotics.
CCrew is offline  
Old 07-11-10, 10:50 PM
  #3  
Senior Member
 
Join Date: Jul 2005
Posts: 3,268
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 118 Post(s)
Likes: 0
Liked 50 Times in 25 Posts
We pulled a tick out of my daughter when she was four. Sent it too a lab to be checked for Lyme disease along with the $25.00 fee for testing. The lab called and said there have been no reports of Lyme Disease in our area so they would send our money back because a test wasn't needed. I said $25 was cheap enough and do the test anyway, SO I'LL KNOW SHE IS O.K. I actually had to talk them into it. Sure enough, it came back positive for Lyme disease. You have to be careful these days. bk
bkaapcke is offline  
Old 07-12-10, 12:57 AM
  #4  
The Professor
 
akohekohe's Avatar
 
Join Date: Nov 2009
Location: Center Sandwich, New Hampshire
Posts: 899

Bikes: Alex Moulton Double Pylon, Surly Big Dummy, Alex Moulton GT, AZUB TiFly

Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 6 Post(s)
Likes: 0
Liked 4 Times in 2 Posts
It is too bad LYMErix is no longer available. The fears of complication from this vaccine have proved to be completely unfounded but caused GlaxoSmithKline to withdraw it after they were hit with several lawsuits and sales went way down. There is still work being done but it is probably going to be quite a while before another vaccine is available.
akohekohe is offline  
Old 07-12-10, 06:08 PM
  #5  
Walmart bike rider
 
gpsblake's Avatar
 
Join Date: Aug 2004
Location: South Carolina
Posts: 2,117
Mentioned: 2 Post(s)
Tagged: 0 Thread(s)
Quoted: 127 Post(s)
Liked 29 Times in 24 Posts
Lyme disease is bad and it affects people in different ways but usually they all feel like crap at some point. That's why it can be difficult to diagnose. Now with social security, correct, they will deny you if you just tell them "lyme disease". A SS lawyer would submit far more information than just "lyme disease" on your claim. I would advise a lawyer who specializes in social security disability claims. A lot of them won't charge you a dime unless you receive the disability. Ie, they will take your case if they know they can get you disability.Best wishes.
gpsblake is offline  
Old 07-12-10, 08:05 PM
  #6  
Senior Member
 
CNY James's Avatar
 
Join Date: Nov 2009
Location: Syracuse, NY
Posts: 809

Bikes: 2010 Felt F5, 2010 Dawes SST-AL

Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Likes: 0
Liked 0 Times in 0 Posts
Tough situation, I can't imagine going through that. We have quite a lot of deer ticks right around my area so if I spend any time in the woods, I make sure to wear a hat & do a head-toe tick check when I get home. scary stuff.

My dogs are vaccinated for Lyme Disease, not sure why they cant (don't?) give such a vaccination to humans...
CNY James is offline  
Old 07-13-10, 07:20 AM
  #7  
Senior Member
 
Join Date: Jun 2010
Location: Germany
Posts: 269
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Likes: 0
Liked 0 Times in 0 Posts
It is good to be informed about Lyme Disease. Information is quite prevalent in areas prone to the bacteria, but it seems in places in the US where it is less prevalent people act as if it is impossible that someone has it. Crazy if you ask me. Part of being a good doctor is being able to conduct a good anamnesis (patient history), which has become a lost art for many doctors.

If you ever get a the bull's eye target rash (red middle, white ring, red outside) go to the Dr. for some antibiotics.

Metieval...when was this blood test conducted? If you are still positive for the bacteria causing the disease you need to go to a new doctor. Get money from your parents, or anywhere. If you still have the bacteria in you your symptoms could worsen. I have no idea what a "rife machine" is, and I have never heard of it being used to treat Lyme Disease. Antibiotics are the best known and researched way of fighting the infection. If you have not taken antibiotics since you have been sick please get a new doctor, and if the bacteria is still in your blood please request antibiotics!!



Edit: I am not sure if dogs are vaccinated against Lyme Disease. Usually an insecticide like that in Frontline et al. kills the tick before it has a chance to transmit the bacteria. Transmission of the bacteria takes at least several hours.

Last edited by ShimmerFade; 07-13-10 at 07:37 AM.
ShimmerFade is offline  
Old 07-13-10, 04:57 PM
  #8  
Advisor
 
Join Date: Mar 2008
Location: Central New Jersey
Posts: 544
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Likes: 0
Liked 1 Time in 1 Post
Too long a story.

Here's my story.

I got bit by a tick, I was misdiagnosed for 1 1/2 yrs I couldn't ride 25 miles at 10 mph. body aches, stiffness, neck stiffness, forgetting things, left hand was shaking as if I had Parkinson's, nightly sweats that soaked the bed. Fiinally I was tested positive for Lyme's. I had two previous tests that were negative, Elissa test has a 70% false negative rate, next test up 30% false negative, which means you have Lyme's but it says you don't. The doctor said I don't have Lyme's, 2 months previous I was biking 100 miles then down to 20 miles. Doctor says what do you expect, you are 2 months older. When I was diagnosed, the doctor said you only need 3 weeks of pills, I saw another doctor said I only need 1 month of intravenous antibiotic, saw another doctor and I was on intravenous antibiotics for 8 months then 10 months of pills. I've been on antibiotics for 18 of the past 24 months and on my "last" 3 month round then I wait and get tested in 3 months. Just about 2 months ago I felt my speed and biking coming back. I'm looking forward to a good test this time. 5 months ago I was tested by 2 different labs, 0 of 3 tests from one lab showed no Lyme's, 3 of 3 from the second lab showed Lyme's. These are advanced tests that can test for both active Lyme's and residual Lyme's and the degree of each.
Lawrence08648 is offline  
Related Topics
Thread
Thread Starter
Forum
Replies
Last Post
Cyclcist11023131
Fifty Plus (50+)
32
05-07-17 07:52 PM
Cyclist0084
Clydesdales/Athenas (200+ lb / 91+ kg)
8
04-04-13 07:33 PM
Chitown_Mike
Clydesdales/Athenas (200+ lb / 91+ kg)
15
10-23-12 03:18 AM
ZenSojourner
Fifty Plus (50+)
11
05-06-11 01:13 AM
jppe
Fifty Plus (50+)
29
09-19-10 05:45 PM

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off


Thread Tools
Search this Thread

Contact Us - Archive - Advertising - Cookie Policy - Privacy Statement - Terms of Service -

Copyright © 2024 MH Sub I, LLC dba Internet Brands. All rights reserved. Use of this site indicates your consent to the Terms of Use.