posted
It seems like to me most of those who I have talked with here remember being biten, where it happened and some even had the bullseye rash. I would just like to hear from those of you that don't remember being bit. And how long it was before you figured out it was lyme. Also if once you tested if you blot came back very positive for lyme of if you were marginal and your llmd treated you based mostly on symptoms. Please share.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I personally did NOT know when I got bitten...
It took the ducks two and a half years to test me for lyme...
they did'nt figure it out I did!
Positive in five bands IGG...
It was'nt till relapse after oral abx that I saw a bullseye...
I speculate that I got this thing in utero...rebitten over the years but my immune system was working fine as I got pennicillin shots as a child for infantile parallysis...
However when I was treated for "old age osteo-arthritis and miss diagnosed ankylosing spondylitis" with steroidal and non steroidal anti iflamms...
I got progressively worse and almost died...
Luckily I ran into Ann H in Ohio where I lived at the time who was instrumental in saving my life and kicking dumb ducks to the curb........
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I was bit by a dog tick. I've never seen a deer tick bite. Personally i think the dog tick made me sick.......
but who knows?
My husband never saw a deer tick either. However he did have a bullseye once that lasted about 2 hours.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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I went to the doctors through the years starting in 2001 with stomach problems-my stomach was bloated and it hurt to eat anything(anything!). I wasn't overweight but just my stomach was bloated out of proportion. I had to wear a size 12 jeans to button them, when my normal size for my weight at the time would have been a 6/8. I thought I may have ovarian cancer and was really scared. The doctor told me that this was "normal" because I'm over 30.
I thought I had yeast overgrowth(I still think I did, but am now thinking that I may have intuitively realized that something was "feeding" on me, whether it be yeast or bacteria). They came back saying it was IBS and told me to take up meditating(so, it's all in my head?).
Over the course of the next 5 years I tried a different doctor presenting with the following problems: High resting heart rate(100bpm) Frequent UTIs Heart Palpitations Trouble breathing from heart palpitations Low-grade fever(always over 99.4 when temp. taken in the doctor's office--Dr. told me that that wasn't a fever) Fatigue-(diagnosis UTI) Ear infection Sore throat...came back negative for strep
Went to a different doctor last fall(November, I think)and was finally diagnosed with Lyme this year, thankfully. The first test in December came back negative, but this doctor insisted on another test which came back positive in February. The first test was Quest, the second was IgeneX. On the IgeneX test the IGM result was positive and the IGG result was negative. On the IGG the 41 band came back ++, the 30 band was +, and the 66 band was +. On the IGM the 18 band was +, 31 band ++, the 39 band +, the 41 band + and the 66 band +.
Now I know now that it's not all in my head. And I'm furious at the doctors who didn't catch it. I live in an endemic area for this disease(eastern MA)!!!
I recently went to a local lecture on Lyme disease in my town, and one of the presenters said, "You must be in tune with your body". It rings in my ears. I was very in tune with my body! It was the various doctors over the years who were not! Posts: 366 | From MA | Registered: Apr 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I don't recall "the bite" either. Never a rash. I was treated for Lyme 10 yrs ago. Negative Lyme test (ELISA) but GP doctor treated me anyway due to symptoms and exposure. Took 6 mths to get well. A year later, I pulled a deer tick from my belly and again took 21 days Doxy as a precaution.
No more obvious problems until 8/05, but after learning more about Lyme, I do believe the migraines, memory loss, hearing loss, hot flashes 5 root canals and brain fog that developed over the last 10 years may have be Lyme related. I am worse this go round and in 8th month of treatment.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I have never seen a tick in real life.
I am one of those people that is bittten by every bug that goes by. I had prblems for many years but my body was holding it at bay to some extent.
I did have a rash once after a bitten by something on the back of my leg while sitting on the lawn. It really hurt and developed a bullseye. I was already sick for years when this happened.
It wasn't for another few years and a massive amount of flea bites while staying in a house infested with mice, that I got so bad I wound up diagnosing myself from an ad in the newspaper.
Looking back, now, I also remember a friend and myself using ourselves for flea bait to keep the fleas off her new kitten until we could bomb the house. Rolled up our pants legs and killed the fleas with our bare hands as.
In hindsight my medical problems started then. Unexplained GI problems, millions of tests for them to tell me... maybe my gallbladder had sludge and to diagnose IBS and put me on a few years of Librax and other meds for it. At the same time I was very hypoglycemic but glucose tolerence tests showed a low flat curve and they could find no explanation.
My best guess is it was 10 or 12 years between the first and second flea exposures.
Otherwise I have had, I think, 2 other bullseye rashes both were while on treatment many years later.
Sorry so long, I got carried away.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Yes- I remember the bite...it was my first time stepping off the island of Manhattan after coming here from living in Australia-
Just put my hand behind my ear and then, "ouch" a wee little nip is all it took-didn't have to remove it- when it fell to the couch I knew immediately what it was- and felt a big- "oh-oh" moment!
kept the tick in a box and it tested positive
no rash- but symptoms started in a few weeks- was on antibiotics after about 6 or 7 weeks- but not soon enough
Treated for 1.5 years now- definite improvement- but not, "cured"
Wiser and more patient though!~
Hope- Sarah
Posts: 119 | From new york, NY, USA | Registered: Apr 2005
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posted
I have pulled at least 6 embedded deer ticks off myself that I remember. Never had bullseye had small blister and itching at site that lasted for months.Have never tested positive . Treated 13 years ago for clinical symptoms of lyme, recovered about 90%. All my symptoms and some new ones , mostly neuro back last 4 months. Was on doxy will be starting rocephin this week
Posts: 41 | From new york | Registered: Mar 2006
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posted
I've had Lyme a long , long time. Pulled off lots of ticks but never thought much about it. Didn't feel the tick with babesiosis, but found the bull's eye a month after I got sick.
Posts: 731 | From NH | Registered: Jan 2002
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
never saw a tick
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
In 2000 i had a tick imbedded on my stomach. the day before my coworker found a few of them in his truck. So, i assume somehow one got into my car too. :-( My bf at the time pulled it off but missed the first time :-(
I kept looking for the bullseye rash...didnt get one, so i thought no lyme. shortly after i had a sore throat on one side that lasted months...i had chest pain too.
I believe i kept it at bay, but never woke up feeling great, always tired, sinus pain,ear thumping, joint pains etc.
April 2005- i remember an odd looking bite on my leg..in May i came down with a bad bought of bronchitis , august it reaccured and that is when i was hit hard by this illness.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I do not remember a bite or a rash. But, mosquitos and fleas like me a lot, could have been one of them.
I was sick for 6 years, diagnosed with CFIDS/FM. Then, finally got the lyme diagnosis just last year. I believe that I've had it for longer, possibly 12 years.
I did not figure it out. I had a new CFIDS/FM doctor who was concerned that I was not improving, but getting worse, and tested me with the Igenex test.
Quest test was negative. Igenex Western Blot was positive. A second Igenex was done 3 months into treatment, and was more strongly positive.
Take care, Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I can't link a specific tick experience to Lyme. However, I grew up with dogs, spending a lot of time outside, and going camping every summer, plus fall and spring. I even worked as a day camp counselor one summer.
I've had this since at least high school, not really sure how much longer. I do remember "growing pains" as a child. I also remember finding ticks on myself, my dogs, my friends. It was a normal part of life where I lived. We checked for them and then pulled them off carefully when we found them.
I was just diagnosed this month. I've had it for more than 35 years.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
Hi Brooke,
NEVER saw a tick nor did I have a bulls-eye rash.
1st got sick in Feb. 1970 with mononucleosis; in bed for 2 wks. with chronic fatigue. Then came the fibro pain, EXTREMELY sensitivie eyes to lights/glare/reflections and NOISE/SOUNDS, IBS, & 15-20 other goodies along the way.
1975, hubby & I went to the lake; outdoors one night watching July 4th fireworks. Next day, hardly a piece of my body wasn't bit up! Everyone said it was CHIGGERS, sp.
1997, I started extensive physical therapy since so much of my body I'd lost the use of. Took swimming PT as well & used spa afterwards.
That's when my 1st rashes appeared after the spa. So thought it was because of my multiple chemical sensitivites! Had to quit the water, but loved working out in it and the WARM water!
At work little bumps broke out on both elbows. I showed a co-worker secretary; she too gets them all the time.
In 2004, my symptoms kept getting worse especially the memory; forgetting details just done earlier.
So I was wandering if I had early-onset Alzheimer's disease like my former sister-in-law. She died at age 40, yes 40, in March 1993 after 8-14 years of this mind-robbing disease. I knew ALL the sx only too well. So I was going to be checked for that until...
2004, went to a metting I read about in Ames newspaper about fibro pain, CFS, MS, Parkinson's, etc. I went & listened for 2 hrs. It was a LYME meeting with no reference to it in paper.
When the speaker, vet Dr. Scott Taylor, talked about lyme patients have all the tender points affected like fibro patients, he got my full attention.
That night or the following months, they discussed Igenex blood lab for the western blot igm/igg. I was the FIRST in this former support group to have my blood sent there and POSITIVE on both! PCP dx me with lyme based upon my years of sx.
McFarland Clinic repeated blood test sending it to Mayo Clinic, Minn. Came back NEGATIVE on 2 bands and 5 bands vs. the 16 bands tested in Cal.
Lost my respect for Mayo at the time, although they helped my Mom with her advanced colon cancer to liver surgery giving her another 2 years with us.
My beginner LLMD was told by 3 support group leaders what my treatment regimen should be; I'm still on it and they added more. 2 months ago, I was up to 19 rx meds!
Noticed you're looking for an Iowa LLMD; pretty much non-existant with good expertise!
Did you read my post about my new LLMD in Minn. & my 3 hr. exam/Q/A, and all the blood she took for me which I detailed what they are testing for using their initials/abbreviations.
She is PRIVATE pay, but she is worth every penny after what I went thru on her thoroughness. Can't wait to read her summary plus ALL the vials of blood, etc. tests sent in.
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WildCondor
Unregistered
posted
The question isn't if I remember being bitten, its how many hundred bites have I had in my life?
Camping outside without a tent in my teens proved that, when I woke up with literally over a hundred ticks all stuck all over me. When to the doctor and they said "wait and see" if you get sick. Lyme wasnt a big deal in the 80's, neither were tick bites.
I worked and lived in the woods so I had hundreds of bites, all over my body, in my scalp, everywhere. One time my friend and I picked off 79 ticks and put them in a jar and burned them. I remember sneaking out in the woods at night to make out with my boyfriend and rolling around in the leaves, then waking up in the morning and going to school, finding ticks all over me sucking away. Wild teenager I was! If I only knew then what I do know now! Sometimes the little suckers are so tiny you can't see them anyway. Its scary out there!
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posted
No, I do not remember being felt like crap for a couple of yrs. Never thought much of it, thought I was getting older (at 37)
Met someone who had lyme and she suggested I go to her llmd since previous testing was negative.
Came back positive on 10 bands and IND on 1 more...DUH! Now why didn't I fight my ducks yrs ago? Because I was uneducated.
Daughter had tick in her scalp July of '03, when I came back positive had her tested even though pediatric duck treated her for 10 days oral amox and REFUSED to have her tested via Igenex.
She came back positive on 7 bands and IND on 1...another DUH!! Wanted to shooto ur ducks at that point.
So to answer your question of do I remember? Me=NO daughter=YES
-------------------- I'm gonna get that lyme !!! Posts: 61 | From Erie, PA | Registered: Dec 2005
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posted
I got bitten about 30 miles south of London, UK. The little sod was kicking it's legs!
At the time I didn't know anything about it and phoned the doctor, it was 10pm.
Guess what he said? 'Leave it in'.... I never had a rash but I did have a raised lump/bump.
It was months after that I started feeling more tired, weak and had light sensitivty.
Then all hell broke loose about 12 months after the bite. I had flu-like symptoms which lasted for 3 weeks and I never recovered after and kept getting more and more symptoms.
3 and a half years after the bite I finally got my diagnosis, I was misdiagnosed for the first 3 years with 'M.E' or 'CFS', like most others.
Posts: 263 | From UK | Registered: Mar 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I guess I am rarer than I thought!
I had the tick embedded in the middle of the EM rash. I thought it was a scab from a spider bite. It was a nymph. 1991.
I then developed multiple EM (bullseye) rashes all on the left side of my body--the side that the tick was attached to. I was just out of high school and my firends called me alien girl.
My doc noted "huge circular hives" on trunk, arm, thigh and breast. Duh. But he DID test ELSISA and I was luck to get positive.
Bad news: he only treated me for 2 wks of tetra.
I did get better and remained well for 10 years though!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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I would have to agree with that. I never had a rash or saw a tick on me. Mosquitos love me too or maybe I have to open my mind to the possibly of it being sexually transmitted. However, that being said I don't think that I could have it to that serious of an extent other than a direct bite. Nymphs can be the size of a pin head I have heard and that 50% of people never see a tick or rash. Thats scary as heck! I'm scared to put one toe in the grass. LOL Posts: 204 | Registered: Jan 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I have never seen a live tick, have no memory of ever being bitten, and have never had an EM rash. I had very clear, classic onset symptoms in 1993, but was not diagnosed until 2003, when I had CDC positive Western blots through Igenex lab.
posted
I don't recall ever getting bit...in fact I'm not even an outdoors type... I think I got it cutting the lawn.
Posts: 187 | From Gaithersburg, Maryland | Registered: Feb 2006
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ticked in ri
Unregistered
posted
I think I was infected as an adult at age 36 but never saw a tick or a rash. My risk as an adult would have been fairly low. I don't hike, camp, or live in a wooded area.
My risk as a kid would have been high. I camped all over New England and played in the woods while camping and the woods near my house. I did see a tick on me as a kid but it's hard to believe that it took 30 years for the first symptoms to appear.
Doctor thinks it's a more recent infection perhaps from the summer of 2004. I do live in RI which has a lot of ticks so it's possible.
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