posted
So I'm new to the whole Lyme issue. After years of seeing doctors for other problems a new doctor thinks I have LD. Waiting for test results at the moment. In looking back over my health history the only time I recall a bite followed by a rash is 26 years ago. I was diagnosed with a brown recluse spider bite (in a region were they are not known to reside). the same year I was diagnosed with having scabies - which is a rash from mites under the skin and I was in a car accident which resulted in TMJ and neck problems.
I was born with Mitral Valve Prolapse and have had issues with it my whole life. I was excused from running the mile in school and had to drop out of dance classes after 11 years because I couldn't keep up in class anymore.
I have had anxiety and depression since my teens, irritable bowel, ulcers and strange fibroids on my legs, back and shoulders. Arthritis in my thumbs, hypoglycemia, migraines and a fetal death.
A couple of years ago I developed hypothyroidism and although I have had it under control with medication, my hair has begun to fall out in the last month.
I have always attributed my health problems to other things and I am finding it hard to believe that I have had Lyme Disease for 26 years and have not had MAJOR medical problems.
Has anyone ever heard of this? How long has anyone gone having the disease before being diagnosed?
Posts: 7 | From Arizona | Registered: Jun 2010
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Probably 42 yrs before diagnosis. I've had it for 52 yrs now. (oh, wait.. I've been well for 5 1/2 now!)
The good news?? You can get well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Welcome. Many people here have had Lyme for a long time before being diagnosed.
I believe I was infected in 1995 in europe but it wasn't until I was bitten in 2007 that I became very very ill (I didn't know it was a tick bite at the time). I was diagnosed 1 1/2 years later.
I think that some people may have a less virulent strain than others. I remember mentioning to a co-worker, I finally have a diagnosis, I found out I have Lyme. I was sooooo sick. She said "oh, that's no big deal my Mom had that." I said was she diagnosed immediately after being bitten. She said "no, years later."
For some reason some people don't get as sick as others.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
I was infected in 1987 and diagnosed in 2005; had treatment and relapsed in 2009...so 17 years before first diagnosis, now going on 23 years... I was often ill, but functional most of the time; diagnosis and treatment can and will make you better...I improved after antibiotic treatment..good luck!
Posts: 172 | From ohio | Registered: Feb 2010
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posted
i'm 27. i believe i was infected when i was 4.
i just got diagnosed in may.
so, yes, over 20 years, here.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Most of us were infected for many years/decades before diagnosis. It is a very common story.
I was infected for 18 years before diagnosis.
I had a variety of health problems, many of which you mention. I was never hospitalized or bed-ridden.
Please watch the documentary Under Our Skin and read the book Cure Unknown, Inside the Lyme Epidemic. These materials will answer many of your questions.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
It was 21 years before I got a diagnosis, and I had to figure it out myself.
-------------------- 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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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I was infected over 30 years before diagnosis. My health problems would wax and wane. Eventually I got bitten again and it took me down until I was disabled.
The good news is, I feel better now than I ever have felt in my life.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I've been sick just over a year. I pulled the tick off and thought, "I wonder if I'll get Lyme disease from that?"
I watched for a rash but never got one. The symptoms I got kept coming and going and moving around, and it took me over 2 months to realize that they were all related and part of the symptoms of Lyme, and to diagnose myself over the objections and ridicule of my GP.
I am the opposite of a hypochondriac, so whenever I have any symptoms, my inclination is to explain them away.
My neck and shoulders hurt? Must have overdone it on the computer.
Extreme pain in leg joints and muscles during vacation? Too much walking.
Too fatigued to get out of bed for 2 days after the trip? Must be jet lag.
Sudden fever and feel like I'm going to faint? Really bad PMS.
Joint pain so bad I can barely stand up from a chair? Boy, I need to get more exercise.
Have to take a nap after work before I can cope with anything else? Boy, that was a long day. Every day.
Sudden desperate need for sleep in the middle of the day? Gosh, I guess I haven't been sleeping enough.
Extra dry eyes? Swollen throat? Patchy rash? Must be allergies.
Noise in my left ear that sounds like electronic Morse code? Hmmm. Fluorescent office lights? Car radio? Cell phone interference? Computer/TV/VCR? Nope, it was in my actual ear. (Took me a few months to realize that.)
Surprise! It was all Lyme.
If I hadn't seen the tick and known that there was such a thing as Lyme disease (even though all my limited info about it was wrong except that it comes from ticks), I'm sure I could have gone on like that for years, if it didn't get noticeably worse all at once.
After a few months of living with the minor symptoms, they start to feel "normal" because you always feel that way.
Even though I know I have Lyme, I have to fight the urge to keep explaining away new things and thinking, "Well, surely not EVERYTHING can be Lyme." But in fact, it can.
Maybe it isn't always, but when you have Lyme and then get some other new strange symptom, it's a pretty good starting guess that it's part of the Lyme.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Thank you all for your input. One more question. I have read that LD can be passed on to your children. I have 5 and I'm a little concerned about them now having Lyme. What has been your experience for you women out there?
Posts: 7 | From Arizona | Registered: Jun 2010
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posted
I looked into the same question of passing congenitally to my kids. It is possible. Right now the thinking is that if it passed to children in utero, they would be born very sickly. And/or would present by the age of 5, most likely as unexplained gi or mood/behavior/learning issues (appearing like something on the autism spectrum http://www.lymeinducedautism.com/whatislia.html )
Knowing this gives me some sense of peace about my kids. But, as they grow, if any of their symptoms take on a mysterious nature, I'm always going to have TBI in the back of my head.
Posts: 252 | From New York | Registered: Apr 2010
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posted
Hey, I just wanted to say I have been sick for 15 years... ALways functional, always in pain. In fact I played soccer and volleyball as a kid until I was about 18.. then I started running.
I did all of this with lyme. I felt sick and crappy and in pain but because I had no diagnosis I felt that I needed to act like "normal" teens etc.
I am 24 now. Got diagnosed in April after 15 yrs of illness,the last 7 yrs of which I have had SEVERE GI symptoms.
Nothing positive yet, but I am 9 wks into treatment. 3rd week of IV rocephin right now in combo with Plaquenil.
As for passing it to the kids... do you think this will apply to me if I do my antibiotic treatment before getting pregnant? i dream of having kids in the future but would not want to pass this disease to them.
Posts: 341 | From NY/FL | Registered: Apr 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I was undiagnosed for at least 20 years. Been in treatment over two years now and getting better.
I have 3 children... all of them have Lyme..two being CDC +. Only the oldest ever had a known tick bite. My youngest (who is CDC+) has ADHD, Fibromyalgia (when he was 4 yrs old), learning problems. He use to rock and bang his head as an infant on up to now (age 7). But none of my kids were "born sickly". My hubby of almost 12 years didn't have any symptom until recently and tested positive as well. Oh.. my twin sister too. All of us from where "Lyme doesn't exist" But.. you can get better:) And if your kids have it.. so can they.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by llaw2: Thank you all for your input. One more question. I have read that LD can be passed on to your children. I have 5 and I'm a little concerned about them now having Lyme. What has been your experience for you women out there?
I had Lyme when I had my kids and none of my kids got Lyme except the one who was bitten by a tick. My LLMD said there was no point in testing them unless they were symptomatic as he treats based on symptoms anyway.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
llaw2:
1 - I've seen a U tube with one person 18 years where they diagnosed parkinsons and it was Lyme.
symptoms improved once started treatment for lyme.
2 - the Lyme diagnosis should by clinical and the tests should only be used as a confirmation.
Reason being many false negatives. a - co infectins impair the immune system resulting in negative results.
b -the WB is flawed by excluding markets, and having strict measures. If a non LLMD did not order the western blot test you may find it difficult to obtain the band results.
Read Dr. B's 2008 "Advanced Topic's In Lyme Disease".
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
that's the way lyme works. Sometimes, it can kill someone...but mostly, one just gets a myriad of health problems and trouble functioning for years and years before a correct diagnosis.
That depends on a lot of things. Prior health, how well your immune system handles it, did you get co-infections? and i even think, genetic issues are at play.
what you are dexcribing is classic lyme and we've all been throught the same thing.
Good news is that you can get well. It is a tough, long road, for most people, but you can habe your life back.
And...you found all of us! We'll help you get there.
Posts: 1104 | From N.California | Registered: Jan 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: it took me over 2 months to realize that they were all related and part of the symptoms of Lyme, and to diagnose myself over the objections and ridicule of my GP.
---
Why is it that doctors always seem to feel that people who come in as patients are crazy or stupid? It makes me angry to read this. I've read it many times here before.
They blame the patient for their own ignorance... And we pay them.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Sparkle - Funny you should mention that. My mom worked for a cardiologist for 20+ years when I was growing up. He always treated my Mitral Valve Prolapse. Just found him again this week to ask his opinion on the Lyme Disease issue and whether or not the symptoms I had as a teen were normal for MVP patients. He told me they were NOT normal but that my recent Dr. is probably a quack and that I need a second opinion. I decided not to respond back until I get test results back. I made me angry though, especially after reading all the info online about Lyme. So much misinformation out there.
Posts: 7 | From Arizona | Registered: Jun 2010
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posted
I reckon through my own research that i have had it twenty years, diagnosed with positive western blot 5 months ago. i had a routine cardioligst apt this week as i have been having skipped beats for 3-4 years.
I asked the question on whether lyme could be causing my unexplained ectopic beats. No she said because I have only been diagnosed with lyme for 5 months theres no way it could be that causing my symptoms for up to 4 years.
Knew at that point she was a waste of time.
Posts: 65 | From Sussex UK | Registered: Apr 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
There are many organisms they once thought were put into remission and declared as not infective--
but past infections because the immuno testing is not sufficient to say whether you are infective or not.
Now in just the past few years they have learned that is not so. And it may be in remission due to
the bodies antibodies, but that many can become full blown once again. Many of them present with
only mild symptoms and can be missed. And Lyme is just one.
I had MVP for years---I had to have Thyroid removed for huge goiter and with it I lost my MVP.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
My daughter is 4 and I had Lyme long before becoming pregnant with her but didn't know what I had at the time.
She seems perfectly well overall but complains often of tummy aches. I'm reluctant to have Igenex testing done on her b/c what would I do with that information? Would I put her on long term abx if tummy aches are her only symptom? Should I?
Posts: 2541 | From Northeast | Registered: Jan 2008
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Laura,
It would be interesting to see if the tummy aches go away with a 2 or 3 week course of abx.
I also had GI problems. They decided to give me treatment for H Pylori even though I didn't have a positive test. I felt 500% better. Unfortunately, my symptoms came back after treatment. But I always knew I had some kind of infection because of my response to those medicines.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Haley- were the GI problems caused by lyme? what was the treatment for HPylori? I have bad GI stuff...
Posts: 341 | From NY/FL | Registered: Apr 2010
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