Topic: Do any of you ever wonder when you REALLY got Lyme?
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
So..I was diagnosed on 5/3/10 after feeling unwell consistently since Feb 2010...maybe back to November 2009.
Now that I am in treatment...I start to wonder how long I have had this given I have no recollection of a bite or rash. I think it was sometime in 2009 or late 2008, but am not sure. And now that I think about it, I have had some symptoms, though very mild, go back a while.
For example:
2009 (definitely infected): I noticed one hand would shake for a few seconds every few months. Blew it off as a tremor that runs in my family that my dad / grandmother have. Also noticed I kept leaving my fly down..joked with my wife that maybe something was wrong with my brain. Also noticed I got more motion sick than usual while riding the back seat of a car or bus.
2006: Diagnosed with GERD and put on nexium.
2003: Lower back and neck would ache from time to time depending on how I slept on them.
2002: IBS...bowel habits changed to having 2-4 looser / more urgent BM's / day.
2001: High blood pressure (I was 26.) Runs in the family. Dad and Grandmother have been on meds since their 20's.
1997: Weird infection in college. Every single one of my lymphnodes in my face and neck swelled up for 3-4 days. Had to go on ABX. Never knew what this was.
1994: Tonsils removed after 2 years of discomfort.
Coincidence? I don't really think I've had it since 1994. But you do start to wonder.
In all liklihood I have had it since 2008 as that is when I moved to my current house in the woods where we have deer / mice and a lot of ticks.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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MDW005
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Member # 22706
posted
Nope. I know exactly when I got Lyme, 1989
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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Dekrator48
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Member # 18239
posted
I never saw a tickbite or a rash, but I distinctly remember the flu-like illness, weeks of throbbing joint pain and resulting fibromyalgia in 1987.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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I first got "bad" in the spring of '07, with neurological symptoms that interfered with work. I pretty much steadily went downhill from there.
But I had a chain of odd symptoms for years, and my "best guess" is that I was infected summer of '02.
It's maddening not to know, and I sometimes wonder if it goes even farther back in me but consider '02 my "cutoff," as I'm not sure I can even handle considering that it's affected me for longer than that!
I was diagnosed by an ILADS LLMD in Dec. '08, which is also when I started treatment. I am much improved, but still fluctuate a lot and experience Herx reactions.
Many days I feel "31 going on 90."
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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blinkie
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Member # 14470
posted
Well, I agree. I think I got it back in high school. Honestly, I think I got it from an ex boyfriend. NOT from a tick. I was only mildly ill all those years.
Until in 2007, I was bit by an actual tick and still had it attached to my leg with the rash when i went to the Dr and he said spider bite. That is when I got a handful of co infections to boot and ended up on death's door within three months time.
Posts: 1104 | From N.California | Registered: Jan 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I've wondered the same thing. I was dx'ed back in 2009 after having sx for almost a year.
My LLMD thinks this is a recent infection, but I wonder...
Back in high school and college I was always, and I mean always in the woods, in the mountains, hiking, running around with the geology club...
Plus I had dogs as long as I could remember, and one dog had a horrible flea infestation during which I was covered in bites.
I've had oddball sx for years and years, but it wasn't till 2008 that I started the major problems--and when I started, it was full-blown everything. Flulike sx, neuro sx, vision, heaart, everything.
I just find it hard to believe that a recent bite would have caused that much trouble that quick.
But I know that it's neither here nor there when I got infected. I'm infected, and I'm being treated.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Nope. I got it the first time back when I was 10. I remember the summer flu I had (worst "flu" I ever had).
I also remember getting bitten again about 7 years ago, which brought it out of remission and gave me babesia. I had Lyme and bart symptoms through the years, but never babs until that bite.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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springshowers
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Member # 19863
posted
Are you asking if you wonder if you you really have lyme even after a positive result on the Western BLot?
I have wondered how accurate it is and moreso if you have have something else and have those same bands show up? But the doctors I have talked to have all looked at my tests and said it was Lyme and that is what it is and they said those bands are pointing to lyme and not - No Lyme.
So.. I stopped thinking that.. after discussing it with various doctors..
But I have wondered...
Such as do those bands show up when there are other various infection loads .. like I have a list of like 12.. besides Lyme.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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lyme in Putnam
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Member # 11561
posted
I always wonder when, but I remember something was wrong big time in 1988 and I was told, epstein barr. There could have been so many times I got infected with the life I led as a kid years ago, but I know definately 1988 was when something came to a head, my legs felt like lead and I was achy, but no one including me knew enough to look for lyme and in the city...God knows before 1988 when I was first infected, but its odd, had no lesions on my brain in 2004 and now I have several in 2010. I know 2002 was another infection with the drooping eye - I worked in a camp delivering sheets, pillows with sandals on in the middle of the woods in 1998. Never saw a tick or rash...
posted
Once I really understood the far-reaching effects of infection by a veritable tick soup of pathogens, I was able to backtrac things with reasonable certainty.
I'm currently 31yr. I exhibited symptoms of tick-born ilnesses as an infant (born in VA in 1978), so minumum of 31yr, but really, closer to 32yr.
My mother has exhibited symptoms since early childhood as well. She lived in TX, Costa Rica, and Argentina as a child.
My grandmother has exhibited symptoms since early childhood. She was born and raised in a wooded area of TX.
My great-grandmother exhibited symptoms of tick-borne illness at least as early as her child-bearing years.
Doc and I both feel it's pretty clear given my history that I was infected in the womb, and with who knows how many different pathogens to boot! Lucky me.
At the very least since early childhood. (I also lived and played in the woods, picked lots of ticks off.)
Posts: 155 | From Texas | Registered: Oct 2007
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sparkle7
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Member # 10397
posted
Yes... I can relate to this. We just don' know in many cases. We really don't know what we are even fighting with the tests so inaccurate. Could be Bb, could be bart, could be babs, cold be some form of herpes, molds, funguses...?
I became ill in the 80's. My first illness was CFS. I lived in Brooklyn - not much of a place to be exposed to ticks. I did go hiking every blue moon in the woods outside of NYC - Bear Mountain. I don't ever remember any tick bites, though.
I lived with cats since I was a child. Who knows..?. It's really hard to pinpoint what we are fighting. They are creating artificial life & taking photos of distant galaxies. I don't know why they don't have accurate testing for these illnesses.
The only thing I can think of is bio-warfare.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
OH yes. Once I got diagnosed and looked back over my life I was sure I got it around age 8. Even wonder if I could have been born with it.
I was heavily exposed to ticks beginning at that age. We probably had about 5 tick bites every weekend we went to our cabin in the woods in Texas. This went on for 10+ years.
Fast forward about 42 yrs and I was diagnosed with Lyme. Had been pretty ill beginning around 1980 (dxd with Fibromyalgia)...but also was home-schooled at one point because I was too ill to attend regular school in the late 60's.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
My first known bite was 1997, bull's eye and all I was in NY at the time and was treated with 3+ weeks (i think it was 6) of doxy, and felt better.
But I have been "sickly" ever since, getting flu like, fatigue, and other bart/babs/lyme symptoms ever since.
I tested positive again 3 times since.
I really wonder if you can ever get rid of this stuff, or if it's just a matter of pushing it back into remission, and then doing enough self-care to keep from having a relapse.
Posts: 13 | From Connecticut | Registered: Dec 2009
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littlebit27
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Member # 24477
posted
I do wonder...A LOT.
The *only* time I've EVER had the flu (knock on wood) was when I 7 and it was nasty bad.
But between then until 2004 I didn't experience too much other than normal teenage issues, although I did have bouts of depression following stressful events.
In 2004 I had a spider bite?? Or maybe it was a tick. I need my medical records to get exact dates and that will better help me figure it out.
Sometime around then I started experiencing lower back pain, sciatica (spell?) problems, HBP even though there was no explanation for it, I was in my early 20s. Kept getting lots of sinus infections, bronchitis, and my first asthma attack in over 14 years.
From 2004 until present I've had constant lower back pain, sometimes so bad it would wake me up at night. Still battled with HPD off and on, really weird, when I was pregnant it would go back to normal but as soon as my kids were born it would sky rocket back up. Same with back pain- go away when I was pregnant come back with a vengence afterward.
Memory issues and confusion issues all throughout this time.
April-Oct 2009-lost 25lbs, wasn't trying Oct 2009 started having period issues even though I've been the same for 14 years.
Then Decemeber my avalanche came and I got my DX in Feb after I figured it out on my own.
Until in 2007, I was bit by an actual tick and still had it attached to my leg with the rash when i went to the Dr and he said spider bite.
Now THAT is truly dumb!!! The dr SEES the tick and says it's a spider bite??
Should have taken a pic of what ticks look like to the appointment, huh!?
That's funny!! I'm still laughing! Doc - this is a picture of a tick. In case you were wondering.
For me - I know exactly when I was bit by a known tick and can date all symptoms.
10 weeks later, sore shoulders. year later, stiff neck developing. 18 months after the bite, fibromyalgia.
Whether we know or not about the tick bite, if it's infected, we're still going to develop symptoms, and they will happen at random times in our lives, too. No rhyme or reason as to timing, except maybe for the first symptoms, which were related to meningitis/brain/spinal cord inflam.
So, just treat, is my feeling.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I had a bite at about 10 yrs old, on my leg. I was so worried about it but they kept telling me it was just a spider bite. We were at my Aunt's house, which was completey wooded except for the front of the house. Half of my childhood was playing in the woods. That was 1959-1960.
Once puberty hit, I had many problems, and began to feel like I couldn't get enough sleep. I started not being able to stay awake in school. When I graduated high school, I knew I could never go to college.
We didn't go to the doctor much, since I had 5 siblings and we were quite poor.
The rest of my life was the same ole story, from doctor to doctor, with none of them finding anything wrong. This went on for 37 yrs, until finally I was tested for Lyme in Nov '07, and came up CDC positive.
Soooo, moral is I've had Lyme & Co for a long long time. Also, co's, Q fever, and several viruses.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
Interesting question and sharing of experiences.
I remember 'spider bites' from when I was a child. Definitely tick bitten in 1992, around 1999 and in 2005. Have had mild occasional 'flu symptoms' for a number of years but increasing fatigue in the last few years. Last year was the worst.
My husband was bitten by a tick, classic rash and symptoms. Soon after I went into a 'flu like' state, decided it was enough like lyme to get tested. Amazingly enough came back positive and started doxy, then researched found out I needed more and found a llmd. Yes, I know I'm one of the fortunate ones and thank God for that.
My docs, etc. think that my immune system was able to handle lyme Y babs for a long time and was no longer able to.
Interested to read more about folks' experiences.
Posts: 72 | From washington dc | Registered: Mar 2010
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posted
I have been dealing with chronic fatigue and pain since I can remember - at least since age 4 or 5. I had a tick embedded in my head after a camping trip our family took, and I would venture to guess that is when it started. Since it was in my hear no one would have noticed the bulls-eye rash if I ever had one. Even then, what did they know about this kind of stuff back in the 60's? Probably absolutely nothing. My mom tells me that she'd take me to the doctor and tell him I wasn't active like all of the other children. She wanted to know what was wrong. I can't remember what lame excuse she said he would always give her.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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