that it went back that far? From symptoms? Seeing a tick? having a bullseye?

having weird symptoms? Positive tests, any or all???? I'm just curious because I was

diagnosed 2 years ago and suspect I had it in 1988 - diagnosed with epstein barr,

mitral valve prolapse, hypothyroidism in 1995 after my son was born (it could have

been before then, but no one checked - I didn't have thyroid symptoms), have had

episodes of anxiety and other emotional issues that I clearly feeling disconnected

in 1985...Being lyme tests are not definitive, although they help, I wonder

when I actually did get it. I guess many wonder the same thing. I recently had a

spect scan in Columbia which showed global hypoperfusion, heteregeneous (slow

circulation in brain), I wish the lyme diagnosis was sooner like everyone else.

Like many of you, it could have avoided heart medications, mind medications,

hospitalizations... I've had cysts from no where since I'm in my teens, every other

year hospitalized for removal of benign cysts (thank God benign). I'm curious about

growths coming from no where. I've had a regular childhood barefoot on grass,

vacations up in the country...Things now I don't do with my family due to me and my son

having lyme. He's 9 and is on meds nearly 3 years. My son told me at six that he

couldn't get out of bed. Blood work showed that his cpk (having to do with muscle)

numbers were off and our pediatrician suggested more blood work, swears that has

juvenile arthritis. That's what started us on our lyme quest (also a dog tick lodged in

the nape of his neck that was so large it looked like a full pumpkin seed). I was

told by 2 doctors and the board of health that dog ticks do not carry anything. My

symptoms really came out on antibiotics, joint pain, trembling, emotional issues big

time on flagyl, ear ringing, heart fluttering, shortness of breath...I know all

of you could add to this list.

Just a thought on how long think or know you have it. It might seem like a stupid

question, with such a tricky disease, diagnosing wise and how it actually peaks

and hides - I might never know.

Thanks for your replies. God bless.

Cigi

[This message has been edited by cigi (edited 11 March 2005).]

[This message has been edited by cigi (edited 11 March 2005).]

[This message has been edited by cigi (edited 11 March 2005).]
 

[This message has been edited by laserred (edited 11 March 2005).]
 

I didn't have a positive test until 1 year ago, 17 years after the bite. I had symptoms on and off since I was 14.
 

We went up there at least 3 weekends out of 4 for the next 10 yrs. I was sick quite often throughout my childhood. I remember having severe pain in my legs on numerous occasions.

There were times I would wake up and was unable to get out of bed due to severe neck pain. Several times, it took me about 2 hrs before I could get up.

So I know those problems could easily have been Lyme. At age 17 I was dxd with mono. I was too ill to go to school for about 3 1/2 months.

Somehow I was able to recover and return to school the next fall....and go to college the next year. I became ill while in college my freshman year. They couldn't figure out what was wrong. Said there was something wrong with my liver.

OK....I don't think I want to tell the whole story here.......it goes on and on. One illness to another. Finally, I began having severe pain about 25 yrs ago and was dxd with Fibromyalgia.

I never had another tick exposure after I was in college, by the way. The ticks at our place in the woods were killed out by fire ants, plus I wasn't running around in the woods anymore either!

So fast forward to my becoming disabled 11 yrs ago and being dxd with Lyme 4 1/2 yrs ago. I believe I could have even been born with it.

My mother had severe headaches all her life and began having seizures when I was born. [sorry mom] I know she has Lyme too, but is not in good enough condition to go thru treatment. My father died of "Parkinson's."

My brothers SEEM to be OK, but I fear they will eventually succumb.

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Lymetutu

[This message has been edited by Lymetoo (edited 11 March 2005).]
 

I remember the tick that bit me, years later (back then I didn't think too much of ticks or what they carried.) It was a dog tick, for the last 7 years I have had minor symptoms.

Two years ago I got symptoms I couldn't really write off as normal and sought a LLMD after 3 drs told me no it couldn't be Lyme.

I feel I have had it for atleast 7 years maybe longer. I remember fatigue, tinnitis, floaters, motion sickness in the car, strange cysts on my legs, testicular pain, a strange pain next to my spine that would come and go, restless leg syndrome, gi problems.

Actually, I can remember years ago when I was in high school we would run 15 miles once a week through the hills in 90 degree heat and everyone would be pouring sweat, I would not sweat one drop. It is perceivable that I might of had it 20 years ago and maybe got reinfected with multiple strains. I used to be in cross country and we ran through the woods of Wisconsin all of the time.

Before I got to college they needed a tb skin test. I tested positive I am not sure but I would be willing to bet that Lyme can cause a false positive on that test too. If I was exposed to TB it certainly would of come out if I had Lyme and the immune system was down even after a year of meds for tb. I really think it was Lyme causing a false positive.

 

I remember two or two and one half weeks into 8th grade I apparently had the flu. Lots of sweats....room spinnning out of control.....either diarrhea or vomiting....so I always thought that is what the flu consisted of.

I was the only one in school with the flu and it really wasn't flu season.

I had been into sports, math and science. Well, my life changed....poor balance, poor eye hand coodination, and poor memory......try and do sports, math and science with that!

I started having dental problems and headaches along with fatigue and insomnia and major arthritic pain in my right knee, wrists and fingers.

I also recall going from an A student in chemistry (in High School) to an F.

Along the way I had antibiotics for ear infections and dental problems which I think accounted for some good grades in school............This occurred in 1963....long before lyme had a name.

Somehow I survived.....I never complained to a doctor until the 1980's.........then it turned into a twenty year search for an answer.

I got that answer in 2001 when I moved to Maryland. At the time I had been living in Indiana (may have visited Michigan) and was hunting bugs for the 8th grade bug collection (required in 8th grade)....I did live in a wooded area also.

I do not remember having the famous lyme ring rash and thought at one time in the early 70's that I was allergic to penicillin because I broke out in a body rash after taking the medication.....duh....finally got tested for penicillin and I am NOT allergic to it so.........the rash and or rashes over my lifetime are lyme related....

I was tested with the ? WB for lyme in ? 82.........results showed I had been exposed but didn't have it! Thank you CDC!

Again in the early 90's a doc suggested lyme right off the bat but....with the results from the CDC I was out of luck!

I somehow got into the medical profession (not my first choice but at least it had math and science) but am now disabled due to poor memory, migraines and too many aches and pains.

Diagnosed with mitral valve prolapse after years of complaining in the late 80's. I also had bouts of hypoglycemia then also.

I, like everyone else, could go on and on.........
 

God bless and good health.

Cigi
 

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Lymetutu

 

I have you been tested for co-infections that are primarily food poisoning and gastro-intestinal infections? Many bacteria that can cause food poisoning can also cause arthritic problems. I had a salmonella infection adding to my problems.

Treated for Babesia and Ehrlicia, and mercury toxicity...........been thru everything with the stomach........giardia, gerd, hiatal hernia.

Am positive the arthritis in my teens was lyme. Also had two bouts of lower extremity paralysis (only lasting seconds) in high school and momentary blindness in college..........

Funny how it all starts to add up in hind sight.

I just forged ahead with my life until it got the best of me. I still do things a lymie shouldn't but..........
 

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I was told it might be like Chicken Pox, where you get over it, or most people do, and it lingers in your system and can later cause shingles in some patients.

One of my daughter's lyme docs thinks everyone may be exposed by now. She is older and thinks, looking back that her parents had it..

But if the government would help more, I would think there would be more hope..

Good luck, you have been through a lot..I have also been told that sometimes the cysts can be symptoms of Bartonella. My daughter has the cysts and Bart.
 

I wanted to get back to you because my diagnosis was so weird....back in 1985!

I was hospitalized for bacterial meningitis. Weeks before that though I had big bumps all over my lower legs and I suddenly had arthritis. It also felt like I had the flu.

The doctors did a spinal tap and then told me I had HIV (at a huge teaching hospital).

About 4 weeks later the CDC called me to tell me that I had lyme. Back then there testing was even worse. How doesn one go from a diagnosis of HIV to Lyme? If my diagnosis was so off, quite possible that your diagnosis was missed back in '85?

I also have 2 kids with congenital lyme. Feel for you. Blessings back.
 

cigi....help us out here!

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Lymetutu

 

Thanks for your replies. God bless

Cigi