posted
My illness dates back to l978, but wasn't diagnosed until a year and a half ago. So far I haven't found anyone else who has had it that long. Anybody have any ideas why? I'm starting to wonder if I'm the only person to survive that long with untreated Lyme. I spent some time grieving the fact that so many years were lost to illness, but now I'm beginning to think maybe I'm REALLY LUCKY to still be alive!
Posts: 40 | From Arizona | Registered: Dec 2005
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posted
Hi Azfan, 23yrs here,and I think maybe longer. I was dianosed a yr and a half ago,also. I have seen others this long and longer. Quite a few on lymestrategies. I have been into alternative healing all these yrs and I feel it has kept me alive.
I'm greatful to at least know 1 of the biggest parts of the mystery. There are many parts to be healed. Mind,body,spirit,emotions. Welcome and Blessings to your healing. Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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bettyg
Unregistered
posted
I go back 35 years ago when I was 21!
Undx for 34 years until my memory was failing me terrible and I thought I had early-onset Alzheimer's disease like my brother's wife who died at age 40 of AD! So I took the western blot at Igenex & both were positive.
I know there are others on here, perhaps Tutu, who have had for 40+ years.
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posted
Undiagnosed for at least 30+ years. I can remember when I was twelve and in the hospital because of heart palpitations. Of course, they said nothing was wrong with my heart.
posted
Infected in 1980. Diagnosed in 2004. My LLMD often tells me that my very healthy lifestyle saved my life.
The disease progressed slowly. It took several extremely stressful events and a very difficult pregnancy to make it totally unbearable and alter my life forever. I was a 30 year-old living in an 86 year-old's body (the doctor's words).
Adequate treatment (+ healthy lifestyle) is helping.
There's hope!
Posts: 159 | From CT, USA | Registered: Jan 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
17 YEARS AN COUNTING
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Thanks for sharing your stories. It's good to know I'm not alone.
Any other 20+ lymers out there? Maybe we could start a club!
Posts: 40 | From Arizona | Registered: Dec 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
18 and counting.
It would be interesting to know how us various long-timers are doing, given the history of tx/non-tx/wrong tx.
For example, we were dx within a year, but the treatment was primitive and involved a lot of steroids (the doc was a rheumatologist -- but a wonderful man, doing his best while laboring in the lyme dark ages, and I won't hear a word against him!)
We didn't start getting truly better until treating the coinfections last year. Leastwise, I'm doing great and expect to be completely off abx in the next 3 months. The hubby's still really struggling. We've had almost the same tx --wish I could figure out what the difference is. I think I'm starting to get survivor guilt.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
Yes, I was told I was born with it since my mother and father and sister all test +. So, 40 years. Migraines since age 10. Numerous other things come and go. On a walker at age 38, but not now, thank God. I am now on disability from my job though..All my docs have been amazed that I worked as long as I have. Just stubborn I guess. Melinda
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
Hi there. Fist time that I was bitten was 1977. That resulted in a diagnosis of rheumatoid arthritis. I was just a baby! Long course of penicillin knocked it out.
Then, in 1985 I was bit again with Bell's Palsy as my first major symptom. After becoming very limited in my mobility, I just got tested by myself and diagnosed in May 2005.
So, either way, I guess I'm 20+ years with Lyme!
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
at least 10 years, maybe more. That was the time I started falling off the cliff, healthwise. Before that, I had back pain, deafness and tinnitus. I'm doing pretty well now!
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I should have said, 10 years till diagnosis and treatment. Dx was in '87. I've been on maintenance treatment ever since.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
I was told that I had lyme when I was 19. I'm now 53. I had major hip pain in the 70s and doctor couldn't figure out why, so I learned to live with it. In the 1980s I went to a rheumatologist and he couldn't figure it out either, so I kept living with it. Finally, around 2000 I saw a lyme doctor, was treated, then she moved to CA. So I'm back to square one.
Posts: 204 | Registered: Sep 2002
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I have had lyme for 20 years, but was only diagnosed this year (via positive IgG IgM) So, I have gone 20 years without treatment.
Posts: 58 | From Planet Earth | Registered: Nov 2005
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posted
Hi, I've had it since 1984. I was diagnosed thanks to a T.V. talk show I saw about LYME disease.DR's didn't know squat back then.I found out early this year"05",I was never treated correctly the first time and I still have the disease 22 yrs. later! I started treatment 6 months ago.I.V.rocephin 1x day, oral zithromax 2x day,and liquid mepron 2x day. I have to admit I'm getting rather discouraged as I thought I would be feeling much better by now. Is it true the longer you've had it the longer it takes to kick it out? Anne
Posts: 7 | From mn. | Registered: Nov 2005
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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
First bite was in 1985, and then I believe I got bitten in 1989 and 2002. I was diagnosed in 2002.
I am just now getting proper treatment.
I like the idea of a 20+ club! Sometimes, you can sure feel alone and lost. This site is a lifesaver, as many have said.
I prefer to focus on the positive tack, that we survived this long due to fortune and incredible strength!
Steph
P.S. Anne: Yes, it does take a longer time to eradicate it, but please don't lose hope! It won't take 20 years; I'm quite sure of that!
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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posted
47 yrs and still counting. I found out I had Lyme 5 1/2 yrs ago. I'm doing very well, all things considered.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Thirty-eight, 39 years ago?
I had ringing in my ears, ADD, summer flus...we would pull two or three ticks off of us a day.
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
I know since 1988, but I remember my depersonalization as far back as 1985. About 20 years and started treatment in 2002, iv since 2004 on and off. Still on treatment for God knows how long.
Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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posted
It's been at least 19 years (had first rash in memory) but believe it's much longer than that. My mother was an avid mushroom hunter and took us with her from the time we could walk. I can remember having several ticks removed by a hot match as a child. I began having muscle problems in the fifth grade, pulled muscles, stiff necks, etc and tingling in my fingers. I had severe headaches and many UTI's. I married in 1981 and began having kids in 83. I had "the rash" after picking blackberries while pregnant with my second child. I'm now on disability, diagnosed with fibro, TMJ, myofascial, and autoimmune disorders. I will know - hopefully - when my oldest daughter gets tested if I had it as a child. She just found out she is pregnant and I'm very worried. All of my children show signs of Lyme and we are trying to find a local doctor. I'm hoping with all of my heart that my oldest does not have lyme!!!!
Posts: 13 | From Greenfield, IN | Registered: Jan 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
15 years so far....diagnosed in 1991.
But untreated for long periods of time.
Not doing well lately.
Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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