posted
Its hard for me to pinpoint how long I've had lyme. Since I dont recall any tick bites.
but If I go by my symptoms. I've had it for either at least 4 years, but probably 12 years.
I've had costochondritis since I was 12. My doc just told me I was in puberty and that it was normal since I was growing. fast foward 12 years and I still have it. constant tenderness around my breast bones . and my back ribs. it doesnt really hurt unless I press on it tho.
I had horrible OCD when I was a teenager. it started when I was 15. I eventually went to a psychiatrist and got put on PAXIL. the Paxil did help. but I still had OCD.
Fast forward about 3 years and my LEFT KNEE mysteriously started hurting and feeling loose. I was climbing a monument with a friend and oh my god out of no where my knee hurt alot and I could barely walk on it. for the past 3 years since my left knee has felt weird. sometimes weak and it slightly gives out on me. numerous xrays have shown NOTHING WRONG WITH IT!
If those were from lyme. then those were my first symptoms. I honestly think ive had lyme since I was 12. i got REALLY SICK this past SEPTEMBER. and had quite the herx when starting lyme meds
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
my first symptom was being tired all day, no matter how much i slept. then i had bad vertigo. that lasted a week or two, then came the headaches and the intense squeezing pressure in the back of my head/neck. after that i was just plain stupid! hah!
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
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posted
I'm like lymegal23 in that I don't know when I was first infected.
I used to think that I first got sick in '07 but then as I started treatment and talking more with my LLMD I realized I had Lyme/co symptoms for much longer than that. We think I had a smoldering infection since at least back to '01.
I'm co-infected with Bart and some of my earliest symptoms were ear pain, small hard bumps on my arms, and intense foot pain.
None of those issues impaired me that much and I never connected the dots that there was a single cause. I blamed a lot of it on stress, etc.
It wasn't until '07 when I started to have constant neuro symptoms that I knew I was sick, and I was diagnosed by an LLMD in late '08.
I've been treating for about 2.5 years and have made improvements, but am still struggling.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
I'm sort of the same way. I'm not quite sure when I got lyme. I'm guessing I was about 12 or 13.
I would have to say my first symptoms were severe joint pain in (just like you) my left knee. Eventually, about a year or two later, my right knee became just like it. I also had extreme fatigue no matter how much I slept or anything.
But I didn't get horribly sick (with all the symptoms) until the fall of 2009, and was diagnosed in March 2010.
-------------------- Lyme918 Posts: 188 | From Massachusetts | Registered: Dec 2010
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Tired, malaise, tingles in strange places that lasted only seconds and the worst was my ARMS!! I woke up one morning and it felt liked I played tennis against Serena Williams....(and i don't play tennis) Ouch....both arms were hurting SOOOOO bad!
Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009
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posted
Knee pain, heel pain, severe leg pain, followed by headaches and fatigue, followed later by GI symptoms, dizziness, heart palps etc.
Posts: 341 | From NY/FL | Registered: Apr 2010
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Kinda hard to remember with all the re-infections all these years but I think intense fatigue and general malasie. Kinda like a low grade flu feeling.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Migrating tooth pain. I spent the first six weeks going to the dentist.
My clue to Lyme was the neurological symptoms that followed a couple weeks later from an antibiotic that my dentist gave me. She thought I had a sinus infection. It still took me about four months to get an accurate diagnosis and treatment. I spent too long listening to the doctors tell me it couldn't possibly be Lyme.
Posts: 132 | From Somewhere | Registered: Jan 2011
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Migraines and more Migraines.....with visual loss. Tired and sore muscles all the time. I was very active at the time and began getting dizzy anytime I tried to do anything physical. Feeling faint out of nowhere. Shopping became an issue...loved shopping and I always and still do get disorientated and lightheaded feeling in big stores.
Posts: 79 | From Oxford,MA,01540 | Registered: Jul 2004
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Stabbing eye pain in my left eye
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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Two bad visual migraine headaches a week apart, followed by overwhelming fatigue. Then I got a very bad dry mouth (could barely eat) for a few days. The fatigue continued and about three weeks later I started getting tingling sensations in my feet. The tingling then spread to my legs and hands. About the same time I started to get muscle twitches and cramps. My blood pressure was up, I had nausea and diarrhea, anxiety, visual disturbances, etc. It took about four months from the start of my symptoms to get diagnosed. Just a horrible time.
Posts: 227 | From Northeast | Registered: Mar 2010
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irritability weakness/loss of stamina anxiety headache brain fog numbness tingling lethargy muscle twitches
Specialist added steroids into the mix and serious neuro symptoms exploded at this point. You get the idea.
Posts: 199 | From Let's Go Pens! | Registered: Apr 2010
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posted
Neck Hip Knees Fatigue Brain fog Then all the joints Then went numb on 1 side
Posts: 96 | From Missouri | Registered: Oct 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Severe fatigue, pain, brain fog, heart palpitations and dizziness. All this happened within the first 4 months.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
8-1 excruciating behind-the-knee pain,8-2 added electrical tingling sensations legs and arms, and numb feet, 8-3 arm pain like tendonitis 8-8 Bell's palsy. Cognitive stuff much later.
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
brain fog odd sensation at the crown of my scalp GI issues
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Seizures, life-threatening heart arrhythmias (coded in the ER once and a pacemaker was recommended), syncope, Parkinsonian-like full-body tremor, migrating dental pain, brain fog/drugged feeling, heart palpitations, spiking blood pressure and heartrate...and the list goes on...
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
fatigue neck pain, then face pain burning/tingles reflux jaw pain fatigue again overall feeling crappy lots of neck pain headaches
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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chiquita incognita
Unregistered
posted
Sore bottom of feet, neuro symptoms, fingers curling asleep into the palm of my hand, bell's palsy, tongue stiffness/speech difficulty, space-outs, dizziness, neuro symptoms worsening with motion, symptoms mimicking transient stroke (misdiagnosed with that once. That was emotional, the lady went into a panic and that sure didn't help my own, wow!!! Turned out to be a false alarm, it was lyme). Feeling like I was climbing out of my body, faintness, mild heart pains and terrible fatigue.
Much improved thank god, no more fingers curling up asleep and face may numb out but does not *usually* go stiff on me. No more space outs but at times during herx's there can still be occasional facial and tongue stiffness. Much, much better after only six months of herbs and herx's have not been too bad at all. Can deal with it.
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
24/7 rocking boat dizziness and balance issues
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
First to my knowledge was chest pain at 6 years old. Fatigue Hugely swollen tonsils w/out known infection Unexplained shooting pain/and tingling RLS Tinnitus -don't remember a day in my life with it! Nausea/vomiting/stomach issues Low comprehension/memory Hypertension Lymphadnopathy and finally a grand crescendo where we realized that I really was sick and it was something greater than we had realized: Nausea/vomiting/stomach pain Headache Joint pain and swelling And it just kept on going from there, been adding symptoms ever since.
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
fatigue, buzzing feeling in the legs, ringing in the ears and unexplained weight loss were my 1st symptoms.
Posts: 44 | From Pa | Registered: Feb 2011
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Looking back... my first symptoms were ankle instability, restless leg syndrome, HUGE swollen tonsils and really bad "growing pains" in my knee that didn't end after I quit growing This all started around age 10. That was 23 years ago.
Then in my early 20s I developed anxiety, and sensory issues... like not being able to have my feet touch carpet, or my hands touch any kind of cloth.
In my late 20s began the heart rhythm issues.
In my early 30s started all the really bad stuff... muscle twitches, joint pain, burning static in extremities, brain fog, ringing and popping in ears, internal vibrating, tremor, hyperreflexia etc etc etc.
-------------------- 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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posted
Mine was shortness of breathe, anxiety, dizzy spins, blurred vision, whole body numb, depersonalization, migranes, then fevers
-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
"Growing Pains" -- oh wait, crippling "deep bone pain and nerve pain. Yeah, ok, let's ignore the kid when he says the pain is excruciating and call it "Growing Pains."
-------------------- 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.
posted
My first symptoms was muscle weakness and tightness. Wasted a lot of time with Rheum's looking for a myopathy.
In the end I diagnosed this myself with the help of the internet. Then Igenex...
If it weren't for the internet, most of us would still not know what we had. Doctors sure don't have a clue.
One of my doctors was sure I had Gulf War Syndrome. Never been to the Gulf and never been to war... well, now I am, but it's a different kind of war. War of words...
Posts: 699 | From confusion | Registered: Jan 2011
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1. Headaches/Migraines/Neck/Shoulder/Back Pain--This began when I was 16 or 17...along with depression/anxiety
2. TMJ syndrome--When I was 17, I was going to Physical Therapy because I couldn't open my jaw, because I had TMJ so bad. I still have jaw pain, but I can open my mouth atleast.
3. Fibromyalgia and IBS-diagnosed when I was 18. Had a Lyme test with an indeterminate result. Doctor didn't think anything of it, since it wasn't CDC positive.
4. Chronic UTI's-from the ages of 18-27.
5. Depression/Anxiety--age 22--dr.'s blamed this on past minor sexual abuse
6. Bullseye Rash on thigh, but no known tick-27
7. Arthritis in knee, hips, and back-28
8. Finally diagnosed with Lyme and coinfections-28!!
The idea of Lyme was always in the back of head ever since I had that indeterminate result when I was 18.I was finally diagnosed because I went out of my way to check on this website. This is where I found out about Igenex. If I hadn't taken the initiative, I'd still be believing that Lyme doesn't exist in Missouri, like my doctor told me after my bullseye rash!
Posts: 71 | From Missouri | Registered: Jun 2010
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quote:Originally posted by METALLlC BLUE: "Growing Pains" -- oh wait, crippling "deep bone pain and nerve pain. Yeah, ok, let's ignore the kid when he says the pain is excruciating and call it "Growing Pains."
- I really have no clue what mine were. I was bitten well over 100 times while growing up...long before Lyme was "discovered."
I do remember having leg cramps really bad. Who knows how many times I had "the flu?"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
fibromyalgia tinnitus bulls eye rash
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Exhaustion Need for sudden naps Falling asleep while driving But night time insomnia Painful joints: wrist, fingers, shoulder Hair falling out then thinning texture Extremely quick weight gain 3-5lbs a week with no change in eating habits Short term memory issues Anxiety Anger Crying Depression No Rash ...until a year later
Posts: 39 | From NY | Registered: Feb 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
1st symptom was a flu-like illness...fever, very sore throat, etc that Dr told me was a virus.
-------------------- 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
swollen submandibular lymph nodes general malaise insomnia increasing fatigue memory issues anxiety leg tremor and weakness lack of appetite anxiety depression right upper quadrant pain weight loss
posted
I was in middle school, but what really stands out is the migraines--developed those before puberty and they're the one thing that has never changed. First symptom and has never let up.
About a month after I suspect I was infected, I came down sick with strep. Antibiotics did nothing. Mother took me to a different doctor and by then I had sinus infection and pneumonia.
My WBC was so high they thought I had spinal meningitis and were going to hospitalize me. I lost 20 pounds (and was petite to start). I had hysterical fit and mom took me home. Two additional antibiotics and I slowly got better.
I won't even tell you what catching chicken pox was like for me--ugh. Every illness I caught from then on was a nightmare.
The kicker to all this? I lived in a town that should have had people that suspected lyme. We were taught about it each year in school, for heaven's sake. But I never had a rash and parents were taught to look for it.
If I continue the symptom and diagnosis list, well, the one I have on my computer goes on three pages. It spans 20 years.
The story just continues in that vein until I'd had enough and in the last few months demanded that someone stop looking at me in parts.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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attention/memory problems and intermittent electrical zaps in my neck and head. Age 5yo. just after a severe case of Bartonella H.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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severe dry eyes no adrenal response low body temp cold (during our hottest summer on record) mild palpitations severe PM fatigue no sweating
The above were no big deal, then bam! It hit me like a hammer.
Posts: 478 | From Third Coast | Registered: Feb 2011
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
A tingly numb arm was my first symptom (sept 2009) that led me to diagnosis but if I think back a few more years, I remember having wrist pain and word search issues that I just thought was normal.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Neck pain, finally resulting in spontaneous disc herniation - about 1 year from when pain began
4 months after disc blew multitude of neuro symptoms hit:
whole body tremors internal vibrating numb feet numb face numb tongue excessive saliva twitching muscles hyperreflexia off-balance, difficulty walking (took complete concentration for my brain to tell my legs to put one foot in front of the other) sudden onset hypertension pounding heart palpitations light/sound sensitivity pin-point sized pupils (didn't dilate in the dark) feeling like I was about to faint/fall down and seizure chills flushing derealization (a sort of weird out-of-body feeling) poor word retrieval - though thankfully, the cognitive stuff was/is mild
hmmm....I'm sure there's more....TS
Posts: 566 | From West Coast | Registered: May 2008
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I haven't been officially diagnosed with lyme yet, but am pretty sure that is what's going on. My symptoms are weight loss (recently lost 25lbs in one month) brain fog, memory problems and now I stutter when I talk. I also get numbness and tingling on the right side of my body in the arms and legs that comes and goes and sensitivity to sounds....but only certain pitches/tones.
I've also experienced derealization and depersonalization but I've attributed that to anxiety. Now that I'm learning more about lyme, I'm wondering if lyme has to do with my anxiety and panic attacks I just started getting about 8 months ago.
Oh...and another thing. I also get "flu like" symptoms but without a fever. In the past, I've just thought it was me over working myself.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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I was pregnant at the time so they said I felt bad cause I was pregnant and needed more calcium for the muscle pain.
From there it went into brain symptoms, adrenal gland issues, and then went to hell in a hand basket where it felt like my whole body was riddled with junk.
Posts: 256 | From Texas | Registered: Jun 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Age 4 - First remember feeling the nasty wandering leg pains (blown off as "growing pains" until high school, then blown off as "sciatica") - feels like my muscles are being shredded one thin thread at a time, or like my leg(s) is/are in a meat grinder. Plus the deep ache in my lower back, and/or knee, and/or hip, and/or ankle...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Chest pain was the major one then numbness one one side of body heart palpitations shortness of breath
The doctor doesn't considered 6 months ago when I went in for next pain and then flu like sickness, or the numbing of my hands when I slept
Posts: 14 | From maine | Registered: Mar 2011
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posted
Swollen knee was my first symptom and currently my last-after five years. climber
Posts: 108 | From Connecticut | Registered: Jun 2010
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posted
Depression /anxiety were my first symptoms. Slowly worsening,ten years later all hell broke loose.
Posts: 342 | From northern california | Registered: Dec 2010
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Flu like symptoms, weight loss (20 lbs in 3 months), not able to sleep though that is a constant forever it seems, sudden mood changes...all from around mid 2009.
Posts: 98 | From Maytown PA | Registered: Apr 2011
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This all started around age 10. That was 23 years ago.
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