posted
I've heard so many say that they've been sick for years and just found out it was lyme causing all their problems.
What problems do you attribute to lyme? What kind of illnesses did you have?
I'm just trying to look back and determine how long I may have had lyme. I've been healthy up until now.
Thanks!
Posts: 86 | From new york | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My opinion unless you had a bullseye rash, it's all speculation here. I hear anywhere from 6 months to 80+ years. lol. No one can really know if this exact disease activated at that time and caused all their issues. It's hard to break apart guessing from fact here many times.
Regarding symptom ID, Lyme is said here to cause every symptom ever known to man so that isn't helpful either. ID docs don't agree with this enormous list of symptoms, but the jury is still out. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Good question Sara and good response seek help.
I do think there is more unknown than known when it comes to things attacking the inside of the body.
Looking back, I too wonder if some of the symptoms that would come and go were from lyme and company.
But, it was not until I saw the bulls eye on my arm and was no longer able to work or do household chores or read or walk or sit upright that I finally was able to start to get answers.
Up to that point, I was able to work full time, get up and take a shower, do household chores, mow the lawn, wash the car, sit at a restaurant and have a conversation with others, etc etc.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
For me, I KNOW when I got sick because I went downhill very fast. Went from being a very good highschool athlete to laying in bed, feeling like my life was completely over because of this so called 'mono' the doc said I must have. Plus I remember having a pretty bad 'flu' in July 1996 the day I got back from a 10 day vacation from South Carolina.
That was the beginning of this hell for me. My mom has said that it seemed like this 'thing' just came and took her daughter away as I got so sick, stopped singing, smiling, ect.
But some people seem to never have a defining moment/period. They have annoying strange symptoms creep up over the years. I had almost every symptom imaginable just tear me down in a very short time.
posted
I had ticks bites back in the early 70's and remember a summer illness with high fever that was quite bad. I had fibromyalgia and chronic fatigue symptoms throughout the years that no one believed I had (just got accused of being lazy).
With stress, three times it became disabling for several months. Then a fourth time about six years ago .... another tick bite, severe stress. This time I was finally diagnosed.
So, educated guess is what tells you how long you've had it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you've been healthy up until now, it sounds like you didn't have lyme until now.
I start counting with the year that I got extreme muscle weakness in episodes lasting about 7 months each. Then, back to normal for about 5 months. That went on for 5 years.
I couldn't stand up very long at all, or walk very long at all during the muscle weakness episodes.
Then, I got sick continuously and lots of other symptoms I won't name--got a diagnosis of menopause!
5 more years with extreme muscle weakness, horrendous fatigue, sleep problems, and so-called menopause. Also, lots of weird sensations.
Lots of people get a diagnosis of fibromyalgia. So, if that's you, start counting with when the fibro symptoms started. Same if you are diagnosed as chronic fatigue.
Since everyone is different, why not look at the list of symptoms in the Burrascano guidelines--pages 9-10 of the following document:
posted
I also think part of the answer depends on when you get diagnosed.
If you get diagnosed early, it might be easier to see when your symptoms started. If you get diagnosed 20 years later...it would be nearly impossible to remember clearly.
I was diagnosed this year, and I know I got Lyme in the summer of 2007. My change wasn't as abrupt as Ocean's, but even still, there was a definite, sudden change.
Of course- at the time, I had no idea. I was able to write all my symptoms off as normal, or just ignore them, until this year.
Like TF, my symptoms would be gone for long periods of time, which made them easier to ignore.
They started being constant about 6 months ago for me, at which point they also became strong enough that I couldn't ignore them. It was then that I started looking back, and realized that something was wrong.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
I was never diagnosed with anything at all before I got sick..well not really.
About 4 years ago I started getting insomnia and anxiety and my doctors sent me down the wrong road with that.
I got really sick almost 2 years ago, but I guess it's safe to assume it started 4 years ago.
I've had a few illnesses throughout my life but I don't think I'm different from anyone else in the general population.
There's just so much scary information out there.
The unknowns are really starting to get to me!
Posts: 86 | From new york | Registered: Jun 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, it is pretty safe to say that when you got the insomia and anxiety, that was probably your start. These are 2 common lyme symptoms.
Lyme attacks the sleep center of the brain. That's why we can't sleep.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
My LLMD says that you know when you got Lyme by when your story began.
It is a profound answer, but having been sick for 20 to 30 years with no solution, I know what he means.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
It makes perfect sense in Maryland or New York, but it doesn't make as much sense when you live in the desert! Do ticks live in the sand?
I was bit 20 years ago in Canada, with only insomnia and night terrors as a kid.
Then 9 years ago other symptoms began and gradually grew worse.
I do not remember a bite around that time, or a flu like illness, or a rash.
I think my son has congenital lyme, and he was born 4 years before my obvious symptoms began.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Do you remember your tick bite? Did you get the rash? When did your symptoms begin?
My LLMD says something similar to LeeLee's, and it makes sense.
For me - I know when I contracted LD initially because I have documented med records with notes about a bullseye shaped rash on a leg.
But that was in '81, before they were really aware of the bullseye's implications.
After that - it was an "atypical recurring mono" diagnosis, and almost a year of homebound instruction while I took prednisone (!) trying to get better.
So much for the good old days.
And after that - mitral valve prolapse, vertigo, POTS, endometriosis (yes, this is linked per Endometriosis Association studies).
But Lyme was not even a blip on the horizon, who knew ticks were more than a nuisance? I had hundreds of them, being outdoorsy.
I had remitting/relapsing symptoms, with enough good times to finish school (with more than one extended break of 6 mos or more due to illness) and work in my chosen field (again, with many extended breaks).
Too bad my chosen field involved outdoor field work, and meant extended back country trekking and many, many more bites.
The tick that brought me down for good though - in my own back yard.
After that, I was unable to work in my field, switched to a less strenuous one (art), then could no longer work in that field either.
Finally - homebound.
The diagnoses went from fibromyalgia to Multiple Sclerosis.
My family began planning for a wheelchair accessible home.
And then... we figured out it was Lyme.
4 years later - no wheelchair, and my life is generally between 80 - 90% functional.
When I say between 80 - 90% functional, I mean that I can do about that much of the necessary stuff every day.
I am not ready to hop back into my chosen field and trek for 2 mos at a time. But life is good again.
So... that's how I came to the 20+ years of infection conclusion.
It's different for everyone.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
The only tick bite I remember was about 30 some odd years ago; however I know something did bite me a few months before I became extremely ill 3 years ago, but I don't know what. It did not make a bullseye rash.
I just woke up one morning very ill, with flu like symptoms and it just progressed from there and I have never felt good since.
Of course I can trace back weird symptoms all through my childhood, starting a year after a tick bite at age 14 at which time I got encephalitis, then a year later my lung collapsed for no apparent reason; but I don't think I can say that I had LD. It was more likely just things that were going to happen.
I don't think that every symptom or illness that you have throughout your life is proof of LD.
I'm not saying that their aren't people with congenital lyme. That is very apparent. I just don't attribute every childhood illness to LD. Some people are just going to be sickly, doesn't mean it has to be lyme.
I guess what I don't understand is how you can have LD for 20 or 30 years and not be dead. I have only been ill for 3 years and I have felt close to death many times. I can't imagine how you could live through this kind of illness for very long untreated.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Looking back, it all seems pretty clear now.
In late summer of 1987 I had a flu-like illness with a severe sore throat.
I saw my PCP and was diagnosed with a viral illness.
Weeks later I developed a constant ache at my right greater trochanter (where thigh bone meets pelvis at hip).
More weeks passed and then I had an acute episode of severe throbbing joint pain in every single joint in my body (every knuckle of each finger and toe, knees, elbows, wrists, ankles etc.....every joint) lasting about 2 weeks.
I saw a Rheumatologist who could find no cause.
When the throbbing subsided, I was left with all-over muscle pain and stiffness, fatigue and sleep problems.
Shortly thereafter that Rheumatologist diagnosed me with fibromyalgia.
I lived with that fibromyalgia diagnosis for 21 years...thinking the cause was viral.
In recent years, my symptoms worsened and I noticed symptoms I did not notice before.
I began researching Lyme and it was clear to me then, that all along, the cause of my illness was not viral, but rather bacterial.
I do not remember a tick bite or a rash.
-------------------- 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
I thought I read that symptoms come on after a trauma like an injury or something? My symptoms began after a c-section, and increased again after my second c-section.
I also thought people have this disease in varying degrees, and it was not unheard of for someone to be asymptomatic.
I know that, until recently, my symptoms increased very gradually. Boiling a frog kind of gradual.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Mine started with a crazy flu. Then 2 years down
the road I realized I could hardly walk and had
been struggling to maintain at all costs. Loss of
gait was the eye opener for me. Being I already
felt like I was going blind. I can look back now
and think you dummy why didn't you demand better
for yourself.
-------------------- 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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bettyg
Unregistered
posted
mine goes back to jan. 1970, 20 years old, and sicker than a dog....flu-like, cold symptoms, etc.
went to local dr. and he took a strep throat swab, etc. examined in under microscope, and declared i had MONONUCLEOSIS. confined me to 2 weeks in bed, and that was horrible for this go-getter 20 yr. old !!!
then started coming all these horrible things: SENSITIVITIES !!!
lights, glare, and reflection are like looking directly at the sun & so painful causing migraines!!
noise/sounds ... i can hear a pin drop. everything is magnified like a base drum. hard on me since hubby is deaf in one ear and lost MAJORITY in other ear even w/hearing aid.
chemicals: perfume, aftershave, hairspray, CIGARETTES & TERRIBLY ON CLOTHING, paint spray cans, cleaning/office products with smells, DIESEL, oriental foods, etc.
the 24/7 pain, constant fatigue, irritable bowel/bladder where i was living in bathroom!!
migraines, tmj, feet..heel spurs/plantar fascitius, nose bleeds, gallbaldder removed in 79 at age 29.
my case....NO BULLS-EYE RASH; NO TICK SEEN OR EMBEDDED!
using my journal started at 13, i traced back to what was happening and where i was during that time in my life.
my conclusion: it was a TICK OFF MY FOLK'S CUT XMAS TREE that got me when i wasn't looking!!
all normal ways were eliminated!! it was sub-zero, iowa weather; i wasn't a gardener & had no plants; NO PETS did my roommates'/i have!
then additional problems kept coming, and to date i've either had 14 or 15 surgeries !! 2 for nose bleeds alone.
age 58, my left hip replacement and dr. nicked my bone stating my bones were soft and that of an "80 year old woman"!!
that's my story, and i'm sticking to it betty
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posted
I actually had the bulls-eye rash in 1994 after camping.
I had no idea what kind of "bug" bit me and left that mark.
I am used to getting weird spider/insect bites.
It did not bother me and I never saw a doctor about it. (I was young and naive)
I couple of months later, I had swollen knees. I blamed that on a long bike ride.
About a month later I had the first of my re-occuring vertigo attacks.
Had various inner ear diagnoses over the years this waxed and waned.
This went off and on for 15 years now.
Finally got dx'd by my endocrinologist who referred me to the doctor I see now.
So, for me it is obvious- 1994. Every doctor tested me for Lyme based on symptoms. The rash never came up until I saw my endo about the persistant dizziness I was trying to blmae on my thyroid.
My Lyme Elisa and WB are negative.
Also have a positive FRY smear for intracellular coccobacilli in rings.
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