posted
I ordered the medical records from my childhood after I got diagnosed at age 44.
I had a bulls eyes rash on my arm at age 9- they thought nothing of it and sent me home. I remember this day as clear as a bell. I thought, ooh, this is good- I can get out of school for the day...
At 10 I was in for stomach cramps, at 11 I was in for low back pain, and by 12 I was having 5 day long incurable migraine headeaches.
Those were all documented events.
I also had chest pains that I called "heart attacks" as well as uncomfortable joints. I always wanted to pop everything. I just felt uncomfortable in my bones.
I've had what I call voices since I was 11, also. They are not actually voices, but like a growling yucky feedback in my head. It's not in my ears. I also have tonal/pressure changes that are in my ears.
I'm super sensitive to all forms of stimulus- my brow has a very deep furrow from squinting all my life. Migraines use my senses to paint their ugly pictures. How can smell hurt? It does.
Lifelong depression, irritability and anxiety. Mood disturbances that have escalated to a Bipolar diagnosis. I'm crazy sometimes- no doubt. Woo-Hoo!!
Fast forward through 20 more years of strange and random symptoms that have caused me to fall on my face repeatedly. I'll get my stride, then BOOM! It's like this big foot gets put across my path and it's all over folks...
I'm pretty much a recluse these days and don't want to see or talk to people. I used to have a very full life... I like that tag line, "If the phone doesn't ring, it's me."
I got reinfected last spring and things have just gone down the tubes since then. I finally got diagnosed by a strange stroke of luck. I was already a patient of an LLMD, who was so baffled by my mental illness and gut problems, I don't think she even suspected it. It was my dang therapist who recognised my symptoms.
That's my story in a nutshell.
The more I read your stories the more I realize just how much my life has been colored by this disease.
Who out there has been fighting this horrid bug for 20 years or more? What can you tell me about how treatment is going? After 35 years, what can I hope for????
$h!t, the first reported case in California wasn't even 'till '77. I had the rash in '74.
We traveled all over the West when I was a kid. Coulda been I got that tick anywhere...
I am having a real hard time letting that sink in.
Good Grief. WHO has had lyme for 35 years?????? I really don't want it to be me.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i don't think you're alone dear.
i remember being so constipated when i was very young that i ended up going to the doctor. then i had mono in high school, always had colds and flu.
i think my mom had it, my sisters have it, and my uncle. mom died at 83 and my uncle is about 81 or so. he's got alzheimer's now.
i bet there are a lot who've had it their entire lives, and it's just now howing up.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Rambler,
I was diagnosed 21 years ago with fibromyalgia. I just figured out 2 weeks ago, through my own research and persistence, that I actually have lyme.
My first LLMD appt is Feb 9. I am looking forward to starting treatment.
I believe that my 29 yr old daughter also has lyme, and possibly her husband. We are investigating that.
3 Dr's told me in the last year that I didn't have lyme.
I am sure I would have gone my entire life without a lyme diagnosis if I had left it up to any Dr.
Good luck to you, I really hope you recover.
-------------------- 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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posted
Hi, Bless your heart, you've sure been through a lot huh!!!
You mentioned that you were already seeing a LLMD, and she was confused by the mental trouble and gut problems????!!!!! First of all, find a new LLMD!!!!!
How were you finally diagnosed??? Is there any plan of starting treatment? Sorry for so many questions, but what symptoms are you having now???
To answer your question--sorry I got off track there---yes, there are many here that have had Lyme for that long. I have had it for 18 years, but was just diagnosed about 2 and 1/2 years ago.
I was also infected in Calif., the Napa Valley area. This was in 1990 and there were sign everywhere----beware of ticks as they are known to carry Lyme Dis. in this area!!!!!!!! Yet my case was soooo classic, so text book but because the test they used, they missed it!
Yes, it is very possable that you've had this for 35 years. Many of the symptoms you've described, my son has. He is 14 and I infected him through pregnancy!!
But, just so you know he has severy mood disorder, dignosed posable Bi-polar, anxiety, horribe anger problems, depresion and the the joint pain, back, stomach, headaches, etc......
He is being treated as am I, and he has had rough times. They have had to adjust his meds. for his moods and depression. However all of this is part of Lyme!!!!! So he can and will get better!!!
Please give us a little more details as far as symptoms now, what made you see a LLMD before being diagnosed, or did I read that wrong???? What type of test did you have and what were the results?
Hang in there; you'll find that many can totally relate and many have it for 35 years + !!!
Posts: 351 | From Georgia | Registered: Feb 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey Rambler,
sort of the same story here. Only 18-20 years for me. Been treating for 14 months. Some things are better, some are worse.
There are several here with YEARS without diagnosis....some are better!!!!
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All Rambeler--
It is Very possible you have had lyme that long- Lyme and its co infections get worse threw time-
Getting reinfected also makes it worse- It happened to me also -
Ticks just like Mosquitoes seem to like to bite some people more than others-
I had lyme 18 yrs before I figured it out- I saw a bullseye bruise on my leg and had No Idea what it meant -I do now-Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
In defense of my doc, I presented with bipolar (diagnosed by a phychiatrist) and unresolved bowel issues after going in both ends with the gastroenterologist.
The gastro-guy tested me for giardia, but that was all.
This doc ran another test and sure enough, I had dientomeoa fragalis (sp?), and put me on 10 days of Doxy. I started to herx- but didn't know what it was.
I also decided to test for food sensitivities- there are plenty.
We left it at that. I did feel better by eliminating the foods. My guts regulated somewhat.
Then I got an abscessed tooth and went round with more abx and had more herx. I thought I was getting arthritic.
I forget at which point I got the latest tick, but all those things kinda converged in my body and I got really sick. I was scared to death. I thought I was a gonner.
Once I described these new symptoms to my doc- we tested for Lyme and Bob's yer Uncle.
I'm getting good care. Five months into treatment.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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bettyg
Unregistered
posted
me, 39 yrs. last xmas.
34.5 yrs. MISDIAGNOSED by 40-50 drs!
tick came off my folk's live/cut xmas tree! NEVER saw it; NEVER had a bulls-eye rash. used my journal to go back to where i was when i started getting so deathly ill.
dr. dx me with mono later known as epstein bar virus!
there are MANY of us here on the board 35 plus years!
i even think mine goes back to age 7-9 when i was having severe groin pains when walking; no one could figure that one out either; so would be 50-52 yrs. like tincup.
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posted
so you can have lyme for so so many years without
the infection actually killing you? you can just
live with it forever? i thought it would kill you
eventually,
Radha
Posts: 392 | From New York | Registered: Dec 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
22 years here. I was infected at age 9 or earlier (Doctor suspects earlier).
It can kill some people eventually, but it depends on genetic and environmental issues. Remember however, Lyme isn't always alone -- in-fact it's not alone "most" of the time. There are 10+ other infectious diseases that ticks carry.
Multiple co-infections are far more likely to kill. For example I almost died on a number of occasions.
I was infected with Babesia Bartonella Lyme Disease Rocky Mountain Spotted Fever Mycoplasma EBV Mold Chlamydiae Pneumonia
That's a lot for one body to survive. Most people would not have. \
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I have learned more about what lyme is really like by reading the stories on this site.
I know I'm not alone and you have done a lot to reassure me that it's gonna be OK.
I don't know exactly what to hope for, but if I can get through the treatment, it's gotta be better. How can it not?
But, how do go about telling people about your condition? Everybody in my life knows I've struggled plenty, but this kinda changes everything, doesn't it? I have lyme, yeah, but I have 35 year old lyme. People just don't know what to do with that information. Jeeze, me neither...
Thank you, All.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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I got multiple bull's eye rashes at the age of 9 in Sweden. Think I had like 10-15 on my legs. Went to several skin doctors, no one knew what this was in 1982. No one. My dad got it too, in 1981. I am really sick but my dad is doing quite fine, with just minor symptoms. So weird this infection....
It hits some poeple really hard, while others seem to cope much better.
Posts: 347 | From sweden | Registered: Feb 2008
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posted
Rambler! Wow. I'm too tired to share my story but if you want you can click on my blog which doesn't tell the half of it, but is similar to yours! Yes it is possible.
And in my opinion, living with untreated lyme for as long as 20 or 30 years has a rascally poor prognosis as far as full remission
Not that it can't be done, but that....
I haven't been able to do it yet.
At a certain point I think it just becomes part of the DNA.
Weird as it is, and as much as it sucks, you are not alone with what you have experienced.
Love the, "if the phone doesn't ring it's me" line.
I'm pretty much a recluse myself these days.
Nasty disease, it is I tell ya...slow insidious progression.
Of course so many don't think it even exists in that way so....
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Rambler,
Recovery as you probably already know is much more then just meds.
I remember when I went to Burrascano he said everything in my life had to change....my eating (reduce sugar for example), no alcohol, regular exercise, sleep and supplements.
No one does know for sure each of our outcomes, no matter how long infected, but remember the whole picture now that you are under therapy. It makes a difference-
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've had it for over 45 years. Wasn't diagnosed until April 06. I doubt I could get my childhood records, but I've traced my symptoms back that far, if not further.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Good Heavens to Betsy! This is the weirdest dang thing I've ever considered...
My sisters both are Fruit Loops in their own special ways. The mood stuff is pervasive throughout our family.
BUT, I am a carbon copy of my mother in so many ways- She has never had migraines or tooth pain, otherwise many , many similarities.
I had the bulls eye at 9, but honestly, I've been agitated since birth. I'd already had 5 sessions with a psychiatrist before the bulls eye!!
My Mom grew up in North Dakota and Minnesota. They got real bad lyme there, don't they?
What a trip! I can hardly fathom it, but I kinda think it's true. Mom has been complaining that there is "something else" making her sick. She doesn't take good care of herself, so she is a mess most of the time.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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posted
Yes, making sense out of all the strange aspects of our lives - at least we finally get to figure out we're not nuts without good reason!
Rambler, it takes a while for it to sink in, sort through it all - give yourself some time...
Btw, the earliest date I have heard from someone who thinks they got infected in California is 1951, in Santa Barbara.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I entered the chronic Lyme world about 5 1/2 years ago when my symptoms went neuro (encephalitis, bedridden, the whole 9 yards)
Anyway, I found a wonderful LLMD pretty quickly and I have had lots of ups and downs over the last 5 years, but I have had periods of functioning at about 90% at least.
It took a while to figure out that all of those crazy unexplainable symptoms I have been dealing with my whole life were Lyme related
While I functioned for the most part (sometimes not so well!) it is now clear as day that I was exposed to lyme at prob about 5 years old to start.
I was bitten multiple times I think, plus an extremely stressful life event combined with a few structural injuries is what did me in eventually is my best guess.
I always tried to hide my symptoms as a child - I felt very ashamed about being different.
So, an estimate would be I've been dealing with Lyme approx 35 years (I'm 39)
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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