I'm just wondering how long people on here were symptomatic before their diagnosis
I am a 25 year old female. My first symptoms seemed to come when I was 12 years old
I never saw a tick on me. and I never got a rash
My earliest symptoms at 12 were costochondritis (I still have that) and very very BAD PMS. my PMS was scary for just a 12 year old. I had depersonalization and crying spells for a week before I got it. something just wasnt right
then when I was 18 years old I started getting busier, working full time as a waitress and I noticed I would get so SORE after my shifts. My feet would ache and my body would pulse as if it were badly inflammed. My body just couldnt handle it. I remember thinking "but Im young and in good shape I should be able to handle this". None of my other co workers had any problems.
I would wakeup every morning and feel hung over. It would get better as the day went on but I would ALWAYS have to drink ALOT of water to feel better. and take good amounts of vitamin C. I wondered all these years what was wrong with me, preferrably my immune system
Then I had bad bouts of OCD and facial acne. I kept going to the dermotologist for it
Finally i got diagnosed in fall 2010. started REAL treatment this past september. (had crappy treatment for 9 months) before that
what were your first symptoms?
Posted by agmorgan (Member # 36230) on :
I'm one of the lucky ones I guess you would say. I had some sort of rash (not bullseye) then a month later it hit me like a brick to the face. Woke up one night with a fast pulse jumping out of my skin and head zaps. Haven't been the same since. There was no slow build.
That was April last year. Had to go to 4 doctors before treatment started 6 months later.
Don't know where I'd be if it wasn't for the information shared through personal stories on the internet.
Posted by lymegal23 (Member # 28573) on :
^ I know exactly what you mean about the internet
I also dont know if I'd still be here if it werent for lyme net. Every hospital in my state all sent me away and told me I was fine.
Posted by Razzle (Member # 30398) on :
My first symptoms started in 1977 or 78, but I wasn't diagnosed until 2007.
Before diagnosis: I saw over 100 doctors in persuit of what was making my body fall apart, and none of them had a clue. I got tons of misdiagnoses, was given immune suppressing medications for supposed "autoimmune" disease (symptoms of which go away on abx and get worse on immune suppressant meds), and was told I was a nutcase numerous times.
My first symptom was wandering leg pains (I still have this symptom, though now it only seems to flare when I'm experiencing herxing or if I skip my abx).
Posted by MichaelTampa (Member # 24868) on :
Symptoms from age 5 or earlier, diagnosed at age 42.
Posted by debilyn (Member # 35753) on :
I was on a trip in Guatemala when I first got sick in summer 2006.
There were some bites on my ankles--looked like fleas or Mosquitos.
Two days after noticing the bites, I got a weird flu like I hadn't had before. Thought I had gotten sick from eating the food there.
Never saw a tick or Bulls eye rash, but had the other bites at the time. But have not been well since.
Started treatment four weeks ago.
Posted by lymegal23 (Member # 28573) on :
^ debi what were your symptoms after your trip? during the past 6 years what symptoms were you experiencing?
Posted by Lymetoo (Member # 743) on :
About 42 years.
Posted by randibear (Member # 11290) on :
years and years...
Posted by jackie81 (Member # 27031) on :
I got sick December 29th 2010. I just started getting flu like symptoms that lasted over a week and then they turned into depersonalization, full ears, VERTIGO, blurry vision, tinnitus that wont go away ...then the rest of the symptoms came.
It was not a slow steady thing for me either it was like I was fine and then BAM totally not fine.
I wonder if that indicated that co-infections are involved bc isnt lyme a more slow thing?
Posted by jackie81 (Member # 27031) on :
Forgot to add..I was sick for 9 months before starting (crappY) treatment and 1 year 4 months before I started proper treatment
Posted by T.Maria (Member # 36396) on :
Haven't been diagnosed yet. But if I am it will be next week. Thank you to the info on the internet.
May 2011 I had the oddest bite (the doc suspected a tick), got flu like symptoms with it so I went to the clinic...got a put on 10 days of amoxil "just in case" and then had a lyme test asap (neg).
Thought nothing of it until I was under investigation for MS in Dec 2011. In hindsight there were many symptoms that I chalked up to having two small children, not eating well enough, and not exercising enough....I was wrong....by Dec things went terribly wrong and keep progressing.
I have seen about 9 doctors and had many tests. Although it seems like forever, I seem to be one of the lucky ones.
Posted by MamaBear11 (Member # 25116) on :
14 years for me. Symptoms started at age 18, not diagnosed until age 32. I am 34 now.
Posted by hopefull (Member # 29198) on :
I was diagnosed with fibro in 1992 Diagnosed with Lyme in 2010
Posted by pme (Member # 31621) on :
I guess I am "lucky" as it was 4 years. ...... Maybe 6. Still Am really just starting treatment though.
I had a bit in 2006 but the symptoms came back in 2008 after a surgery that I had. I think the Lyme was never appropriately treated and I was incredibly sleep deprived at the time of the surgery. I guess my immune system couldn't fight it anymore.
I felt crazy had no energy and lots of body aches and headaches. More cognitive and neuro symptoms developed from there until I was finally diagnoses 4 years later.
Posted by Lymetoo (Member # 743) on :
pme .. 4 wks treatment is as good as nothing
Posted by pme (Member # 31621) on :
Lymetoo. Yup. Now I know that!!!!!
After four weeks they wiped their hands of it and started looking at lupus fibro cfs and everything else. Hindsight really is 20/20.
Posted by Robin123 (Member # 9197) on :
25 years diagnosed with fibromyalgia.
I had a known tick bite on my foot in Big Sur, CA. I didn't know it meant anything.
No rash. First symptoms were sore neck and shoulder muscles and I thought it was from my work, so I went to RSI groups for 25 years! - repetitive strain injury. I sure learned alot about everything I didn't have!
So I can say to those of you who never saw a tick bite - it's real! Ticks can really cause all this, or whatever way you happened to get it.
Posted by Katy Lu (Member # 36459) on :
I had a bite Oct 2010. Immediately saw a dr. Was prescribed 2 days of doxy. Not knowing any better, I believed the dr. when he told me I'd be fine. I started flu like symptoms about a week later, and continued on with more and more. As most of you know, it's easy to dismiss symptoms as something else, until it hits you full on. A year later I saw a ID dr. my test was negative, but he believed I had Lyme and treated me with 2 months Ceftin. A month after completing the abx I started dropping things. This was a definite sign for me that it was back. Now it's like deja vu; pain, stiffness, the lyme yuck.
Posted by ktkdommer (Member # 29020) on :
I was undiagnosed from 14 to 44. 30 years of doctoring and 10 of a lupus diagnosis.
I still would think I just had lupus if it weren't for my youngest son getting so sick.
Posted by paulieinct (Member # 17514) on :
I am 63 and have finally put all the pieces of the puzzle together. First symptoms age 6. "Ear infection" landed me in the hospital. Walking into the hospital with my Dad, I remember complaining that my leg was numb.
Sometime after that hospitalization I had my first panic attack with tachycardia, yes, at age 6. Then painful neuropathy in my toes. I remember sitting on the edge of the bathtub screaming while my Mom tried to clip my toenails. It was when this same neuropathy returned three years ago that I made the connection. Right now all the toes on my R foot are red and swollen, with some peeling, even necrosis.
Age 7 until my mid 20's had hundreds of nosebleeds, twice hemorrhaged from the nose (dysautonomia causing BP spikes, I know now), air hunger, fast pulse, anxiety, urinary incontinence, urgency. Curious purplish streaks on my flanks for years and then faded.
Wicked bad stiff neck following fever as a teenager, followed by spinal pain, profuse sweating which I have to this day.
As an adult I have had multiple orthopedic surgeries including two spinal surgeries and two total shoulder replacements (first one botched, had to be redone.) Several seizure-like episodes, ataxia which looked like MS, neurocognitive issues like not knowing where I was or where I was driving, getting lost. Several visits to ER, once on a stretcher, for episodes of tachycardia and arrhythmia. Numb spots on my body.
Almost overnight my hands went stiff and fingers would close into a clenched position. Episodes of blurry sometimes double vision.
I finally diagnosed myself at age 60 after presenting with a rash which was misdiagnosed as ringworm by local walk-in. All standard Lyme tests negative. My PCP was a Lyme-denier. I confronted him and TOLD him I obviously had Lyme and demanded treatment with antibiotics. His response: "You know what? I think you DO have Lyme." If I hadn't confronted him he would have watched me die of this disease. He suggested Yale. I said, "No thanks."
Went to LLMD, got IGENEX pos. and started treatment 3 1/2 years ago.
I believe my mother died of Lyme Disease: epilepsy, swallowing problems, spinal pain, early dementia, severe depression with psychosis, Parkinson's, then severe dementia.
I believe My Dad had Lyme which caused a full-blown psychotic manic-depressive episode, complete with hallucinations.
I believe all my siblings have Lyme, but with one exception, they are in denial. I believe we all may have gotten it gestationally from my Mom.
Of note: My mom was from Maine, which has always had deer, unlike CT which only saw the deer returning in the 60's and 70's.
I know we could all write a book describing our journey into Lyme-Land. I'm thinking of writing a screenplay: Act 1, Scene 1: My parents wedding, and honeymoon where my Mom had her first grand mal seizure. It happened while they were staying in a convent visiting my aunt who was a nun. In the middle of the night my mom's seizure caused quite a ruckus with all the nuns running around like penguins. You can't make this stuff up.
Posted by WhitneyS (Member # 25666) on :
I'm 27, first symptoms occurred in 2004. They came and went, then slowly started growing. 2007 diagnosed with Celiac
I very sick but couldn't stop my life until 2009 when I was virtually disabled. Diagnosed with EBV then shortly after Lyme in 2010.
2 years of treatment this April.....not better yet. Gosh can't believe its been 2 yrs of treatment.
Posted by triathletelymie (Member # 26456) on :
Six months undiagnosed...two years in treatment so far...
Posted by Kristen J. (Member # 24566) on :
Two years for me! I finally saw a cardiologist, who used to practice in MN, and he knew instantly....but he was probably the twenty fifth doctor i consulted.
The rest ridiculed me.
Posted by lyme918 (Member # 29686) on :
I'm currently 21 and I first started having symptoms when I was 11. I was diagnosed in 2010 and am about to reach the two year mark for treatment.
Posted by 'Kete-tracker (Member # 17189) on :
Only a little over a month, Thank God.
My doc was smart & be-lieved me when I said I knew it was something pathological; either a bug or virus, OR something wearing out in me.
My TSH (thyroid stimulating hormone) level came in sky-high, the 1st sign Something was amiss.
Then a CDC+ result from Quest in Boston confirmed the Lyme. :-(~ But I was lucky. I was able to be on abx within 5 months of the double-bite. (Still f%$! expensive to get better, though... & the primary recovery took around 8 months)
Posted by betty1939 (Member # 18240) on :
I was diagnosed Jan 2009, about 8-9 months after I got lyme/babs.
It started a few days after my trip to the Smokey Mountains. It started with migrating joint pain (started in my left ankle, which climbed upward to knees, elbows, wrist, shoulders, and flu like symptoms, then came the severe neck pain.
Within about 3-4 weeks, came the severe head pressure, stabbing/jolting pains inside my head, racing heart, ear pain, and extreme agitation.
The funny thing is because I had mosquito bites and flea bites from a flea in my bed, I first suspected lyme and was surprised when the test came back negative so my PCP started looking at other possibilities. I had no idea that would be the beginning of a life change!
I never had a sick day before lyme and at the time I was working, getting my masters degree, exercising 3-4 times a week, and enjoying my middle age years with my husband.
I had a trust in doctors which is gone forever because of how horribly I was treated by doctors in the hospital that I stayed a week in. The doctor in charge of my care actually tried to tell me that I was depressed and that why don't I just admit that.
I yelled at the infectious disease doctor because my head felt like it would explode and he tried to tell me it was fibromyalgia and that I would need to learn to just live with it.
After a week long stay at the hospital and a series of test they diagnosed me with somataform disorder (a mental disorder where people think they are sick). I was so ****ed and very scarred after that experience.
Sometimes, I think about going back to that doctor and showing him my positive lyme and babesia test just to rub it in his face, but honestly he was such a pompous jerk - it probably wouldn't make much difference anyway.
I didn't find lyme.net right at first but I started out at team inspire another internet support group where two people posted about "Neurological Lyme" and that is where I put it all together.
Also, my husband's old college buddy who is a lawyer here in my town told him that he needed to take me to a different state for a lyme test because the test here in Ohio weren't any good.
I found lyme.net and asked for a list of LLMD's in my area (closest one was in PA) so we made an appt and had to wait another month to get the test results. I started out with treatment a month later, but ended up switching LLMD's two months later, because this doctor wanted to sell me $300.00 worth of vitamins and give me very little antibiotics.
I switched LLMD's and started feeling better after about 4-5 months, but didn't get treated for babesia.
I also didn't know at the time that I also had mycoplasma and hemobartonella too, so I can say that I've been lucky in some ways that it got caught earlier compared to others, but not so lucky in other ways because of bad early treatment.
Posted by Dekrator48 (Member # 18239) on :
21 years!
Posted by linky123 (Member # 19974) on :
20 years.
Posted by anuta (Member # 22646) on :
20 very long months for me....
After trip to Cuba , immediately started to have sinus infection-like pains, headache, low degree fever. Then more different symptoms started to appear.
I've always known all of this had an infectious rout, I've always felt better after short course of abx. I just couldn't convince any doctors that I have seen.
After at least 30 visits to numerous doctors and emergencies in the hospitals, 2 trips to Russia (I have Russian origins), during the second visit I have decided to do IGM & IGG to ALL existing infections in the private lab- Lyme came out positive!!!!!
2.5 years of abx- better , but not 100% Going to Germany to try photon treatment next month.
Posted by lymenow (Member # 36175) on :
2009 bite/sick...1 month of doxy and a whole bunch of steroids.
symptoms came back with a vengeance in summer 2011, saw 20+ specialists who all dismissed symptoms and hospitalizations.
october of 2011 i demanded a lyme test (doctor protested, but said ok) and sure enough ++ on lyme and countless co infections...
i just turned 34
Posted by AuntyLynn (Member # 35938) on :
15 years between bite and diagnosis for my Mom.
Docs gave her anti-depressants, recommended "counseling." Damned Chauvinists!
Posted by AuntyLynn (Member # 35938) on :
Betty1939 -
I WOULD rub it in that doctor's face! Especially since he was a pompous jerk!
These docs are absolutely the most dangerous to the next Lyme patient who walks through his door. Someone who might believe his BS, and go years, or decades more, without any help!
Posted by hopeful4 (Member # 8486) on :
Had sudden onset of symptoms post-surgery. First diagnosed with chronic fatigue syndrome, then fibromyalgia. It took 5 years to get the lyme disease diagnosis.
Still treating after 7 years.
Posted by pme (Member # 31621) on :
Hopeful that is exactly what happened for me. Surgery. Life changing surgery. Then I tested positive a few months later even though I has the symptoms immediately following the surgery. Treated me for two weeks and then went on todiagnose lupus. Sjogrens cfs fibro etc when all along it was staring us in the face. Four years later I was diagnosed.
Posted by Larae30 (Member # 35220) on :
I got super sick out of nowhere after coming home from a week long trip in Austin, TX last summer. I went to the ER, neurologist and the dr. multiple times. They finally said I had mono... I knew it wasn't just that and from researching, I asked my dr. for a lyme test and was positive in late Nov., so I went a little over 3 months, which is nothing compared to most, but I am having a hard time with treatment.
3 weeks of abx, HA. If it weren't for me being my own advocate, I would've just done 3 weeks and felt like crap forever. I also tested positive for babesia.
Posted by paulieinct (Member # 17514) on :
betty1939 said:
"Sometimes, I think about going back to that doctor and showing him my positive lyme and babesia test just to rub it in his face, but honestly he was such a pompous jerk - it probably wouldn't make much difference anyway."
Betty, and everyone else misdiagnosed: I urge you to rate your doctors on the various doctor-rating sites online, like vitals.com. You can do so anonymously, and you can go into detail in comments section for all the world to see. I did this with the three or four worst lyme-deniers I saw.
Rather than stew about it, do something to let the world know that if a patient might possibly have Lyme, they should NOT see these docs.
Posted by Rivendell (Member # 19922) on :
15 years, although I figured it out after 12 years. Took me three years to be able to afford to see a LLMD.
Posted by LymeLogged (Member # 36494) on :
18 months for me, maybe longer.
www.ratemds.com is a good doctor rating site as well. Some doctors however make you register before leaving comments. They are in the minority though.
Dr. S in FL is one of those who requires registration, which is probably the reason all his reviews are glowing. No negative reviews.
[ 03-15-2012, 03:45 PM: Message edited by: LymeLogged ]
Posted by debilyn (Member # 35753) on :
lymegal,
My symptoms were always lots of fibro-like pain, crushing fatigue, and a slow meltdown of my brain.
Kept getting worse each year even though fibromyalgia is not a progressive condition.
Pain and inflammation got so bad after four years from when it started that doctors put me on Prednisone, took the P over a year before finding out about the Lyme.
Posted by paulieinct (Member # 17514) on :
quote:Originally posted by pme: Hopeful that is exactly what happened for me. Surgery. Life changing surgery. Then I tested positive a few months later even though I has the symptoms immediately following the surgery. Treated me for two weeks and then went on todiagnose lupus. Sjogrens cfs fibro etc when all along it was staring us in the face. Four years later I was diagnosed.
Interesting how often I hear that the onset of symptoms came after a major surgery. That's what happened to me too. My recovery from back surgery 30 years ago was a friggin' nightmare, mentally and physically. I was wracked with body-wide pain, depression, and anxiety. And now I know why.
And 5 years ago, after four orthopedic surgeries in one year, another major flare of symptoms, now with cardiac and neuro manifestations.
Surgery is a trauma and any trauma causes borrelia to flare. In addition, surgery on borrelia-infested tissues just dislodges the spirochetes and they mobilize and proliferate.
I firmly believe all my orthopedic surgeries were due to borrelia-ravaged joints. I'm guessing more than a quarter million dollars worth of medical/surgical care could have been avoided with the timely administration of a few dollars worth of antibiotics.
Posted by aiden424 (Member # 7633) on :
I got sick APRIL 16,1986. Didn't know it was Lyme till about 7 years ago. I had a bulls eye rash when I first got sick. Had it when I went to the Mayo Clinic. The CDC test was negative.
I had an IGenex test seven years ago and both IGG and IGM Lyme test came back very positive!
Kathy
Posted by pme (Member # 31621) on :
Paulie I always say surgery is like running a dry cloth over an inch of dust. It just scatters it everywhere. That is now what surgery feels like now. Where the dust settles is anyone's guess but it usually results in a multitude of symptoms.
Posted by paulieinct (Member # 17514) on :
quote:Originally posted by pme: Paulie I always say surgery is like running a dry cloth over an inch of dust. It just scatters it everywhere. That is now what surgery feels like now. Where the dust settles is anyone's guess but it usually results in a multitude of symptoms.
Exactly! Very apt description.
Posted by Robin123 (Member # 9197) on :
Re doing something about it - yes! - I encourage everyone to speak up to all medical professionals and order them to get properly educated!! I bring brochures to them all.
I also contacted everyone I'd seen during the 25 years time I'd gone diagnosed, to educate them.
Posted by 17hens (Member # 23747) on :
I had symptoms at least 15 years before getting the tick bite that made me sick, sick, sick.
But these symptoms all seem like they could be caused by something else...
my foot hurts so bad I can hardly walk because I started exercising... my shoulder hurts (like a torn rotator cuff) because I shook my sheets off the clothes line... my brain fog must be from being tired... my back hurt from stress... my neck hurt because i slept on it wrong... my eye was dry because I have an unusual corneal virus (went away w/ rifampin)... I could't sleep due to stress... I was depressed due to hormones (no antidepressant worked for me but mepron took it all away)... I was so angry that I had counseling/anger management class (didn't help but mepron brought me back to the old happy, mild mannered me)...
I wish I would have known.
(I keep editing because I keep thinking of more!)
[ 03-15-2012, 05:54 PM: Message edited by: 17hens ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by LymeLogged:
www.ratemds.com is a good doctor rating site as well. Some doctors however make you register before leaving comments. They are in the minority though.
Dr. S in FL is one of those who requires registration.
- Very interesting.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by aiden424: I had a bulls eye rash when I first got sick. Had it when I went to the Mayo Clinic. The CDC test was negative.
- And of course, Mayo was too stupid to figure out what a bullseye rash meant!
Posted by aiden424 (Member # 7633) on :
The Mayo Clinic said my bulls eye rash was granuloma annulare.
Wouldn't go to the Mayo Clinic for Lyme!!!
Kathy
Posted by doglover (Member # 19374) on :
Now that I see eveyones yumptoms I wonder if mine
started as early as 8 0r 9 years old. I had
terrible problems with bladder control. I was
never far from a bathroom, having alot of
urgency and frequent accidents.
I thought my symptom started in late teens with
sharp pains in my legs and eye problems. Now I wonder.
Posted by 17hens (Member # 23747) on :
You know, this thread or at least these stories should be sent to every doctor on the planet. At least one of them would make a connection eventually, don't you think?
Posted by paulieinct (Member # 17514) on :
quote:Originally posted by aiden424: The Mayo Clinic said my bulls eye rash was granuloma annulare.
Wouldn't go to the Mayo Clinic for Lyme!!!
Kathy
I agree. I say "HOLD THE MAYO!" So many horror stories about that place. Mayo, Yale, and UCHC here in CT are the KILLING FIELDS of this epidemic.
I swear if I ever again come across a doc who starts ridiculing the notion of chronic Lyme, I may just punch the guy in the face. I'll blame it on Lyme Rage.
[ 03-16-2012, 12:06 PM: Message edited by: paulieinct ]
Posted by Kudzuslipper (Member # 31915) on :
I began seeking help for muscle pain, exhaustion and odd rashes 22 years ago. Had a borderline positive Lyme test in 1999, was told after a week of doxy that this was not Lyme. I was dx with fibromyalgia, allergies, and hormones. And I accepted it and forgot about Lyme, until Last year, I started losing words, was so exhausted, and in so much pain, My doctor tested me without my knowing. Still only one band, but she treated me agressively and low and behold, I herxed big time. Further testing with llmd confirmed it. I will always wonder if Lyme stole 22 years of compromised living. And yet I know I am one of the lucky ones, my symptoms are mild compared to many of you.
![[rant]](graemlins/rant.gif)