Topic: Were you Lyme literate before getting sick w/Lyme?
lymebytes
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Member # 11830
posted
I talked with a man yesterday that is "regular" at the park where we take our dogs.
I asked him if he ever has pulled ticks off of his dog. His answer was a casual, "Oh, sure". I then told him I was bitten likely at that park and have been very sick and in pain for 2 years. He said, "From what?" I said,"Lyme disease". I educated him.
I must admit, I knew very little, but at least knew some basic info. I knew ticks carried Lyme, but I thought Lyme was easily cured with a week of abx and that I would know I had it if I had been bitten, surely I'd see it and if I got "joint pain" I'd go to the doctor and easily be diagnosed. Of course, I knew nothing of co-infections.
I even pulled about 10 ticks off of my 3 dogs just a few years ago. My gut instinct was to put them in a jar and send them "somewhere" but I had no idea where and ultimately threw the jar in the garbage.
I blame our local government agencies for lack of public awareness, agencies like vector control that inundates with W. Nile warnings and never talk about Ld -it is no wonder people have zero knowledge of this disease.
Edit: I had to add this when I read many of your posts - I diagnosed myself by researching symptoms, but I still thought LD was cured in a week or 2 of abx so I ACTUALLY SAID THIS TO THE DOCTOR-"Test me for Lyme, God I hope its Lyme!" Uh, yeah..be careful what you wish for.
How much knowledge did you have before getting LD?
disturbedme
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Member # 12346
posted
I knew nothing, sadly. At the time I looked up my symptoms and Lyme Disease kept coming up, I thought "Maybe", and I think it may have been one of the first times, if not THE first time, I've ever even heard the two words in my life. When I showed my husband the list of symptoms he was like, "No... those symptoms are all over the place." Well, yeah, so were/are MINE!
It's so mind boggling to me that this information, this NAME, is being kept in the dark and hidden from people. It's disgusting, really. Every other disease is readily discussed on TV, the radio, by your doctor, but then when anyone says Lyme Disease it's like someone said a bad word.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Before I had Lyme I knew of lyme but didn't know much about it or fear it AT ALL. I had always ridden dirt bikes through the woods, camped, and spent a lot of time in the woods in general. I think I had the attitude like I'm immune to that rare disease.
Now when I tell people about lyme they act like I'm crazy or blowing things out of proportion.
I told one of the first pcp's I was seeing when I started getting sick that I had found a tick on me a month or so earlier and he said oh lyme is rare in this area....lol
There is a definate lack of awareness and education on TBI's.
Posts: 413 | From nj | Registered: Nov 2005
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TerryK
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posted
No, I was not what you would call lyme literate. I had seen some news stories about some patients who said they were very sick with something that resembled CFIDS and that they were not able to get well.
edited to add: the news stories said it was lyme
My dog had a tick on her neck. I took her and the tick to the vet. The vet said we don't have lyme disease here and she threw the tick away. This was about 13 years ago. My dog had health problems off and on for several years and then died of a mysterious illness that closely follows what one would expect of lyme. The vet sent her body away for autopsy but they found nothing except that her organs looked abnormal.
When I tried to get tested for lyme disease in Oregon I was told repeatedly that we don't have it here. I finally found someone to test me and he tested me at IgeneX but would not treat even though my test was IgeneX positive.
It took me over a year of research after that but with the help of lymenet, pubmed and many other sources I came to the conclusion that this could be the reason for my off and on illness since age 5. Many family members are sick too. I think lyme is rampant in the area that I grew up. There is lots of fibromyalgia, CFIDS, MS etc.. No lyme of course.
I find it absolutely horrific that the medical community is in such denial and so ignorant.
Terry
[ 14. January 2008, 05:10 PM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
When I took the tick off my daughter's back in 1991 when she was 11, I knew that there was Lyme disease. However I had no clue what it could do or that there were co infections. Never in my wildest dreams could I have imagined what it took to treat it.
I asked our MD and he said not to worry about it, that since she got bit in Idaho there wouldn't be a problem since there was NO Lyme in that part of the country. We were there from Oregon visiting my Mom.
UH HUH, my friend I went to HS with is from the same area my Daughter got bit and guess what??? You guessed it, she has Lyme. Her Husband just had a heart attack and passed away. He had no past history of heart disease.
They hunted, fished, camped, all the things people do that like the outdoors. The MD's there tell her there is no Lyme in Idaho and that it must be "something" else. I sent her out of state to see a LLMD. She is doing well.
So, yes, I knew a little bit about Lyme and had heard of RMSF, but I certainly wasn't educated.
HUGS,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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heiwalove
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posted
i'd heard of the disease, but thought it was no big deal and easily cured with about 3 weeks of abx. !!!!
posted
12 years ago when I first started to date my husband, he told me he had Lyme...He seemed fine to me other than being tired alot....I never gave it another thought, he was on abx for 30 days and got well (he was treated within 1 week of tick bite).
Even when I was so ill, and we were trying to figure out what was going on, it took us, actually my husband suggested it a couple of months to get tested.
So, even with first hand knowledge, I was very ignorant.
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posted
When I was first infected 19 years ago, I had never heard of it and neither had my parents or pediatrician.
Even after I started getting sick a few years ago, I didn't think it could be the Lyme.
It wasn't until my sister found this website that I even was pushed to go get bloodwork.
Improver, I can't believe nowadays there are still doctors that say Lyme isn't present in our area.We live very close (you probably on the edge of) the Pine Barrens. Everyone and their mother hunts deer where we live.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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1Bitten2XShy
Unregistered
posted
Come to think of it, now as I wrote this post...all this time I have been blaming my poor cat for giving me the tick....hmmmmm....
maybe I should blame my wonderful hubby...and it just stayed in me quietly until the death of our son hit and then I got sick....hhhmmmm
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posted
I knew nothing about Lyme disease, except when I was about 10 and my mom made us pull our socks up over our pants when we went hiking. I was like "Awww, Moooooom! But I look like such a dork!"
I have never been bitten by a tick (that I know of). My two sisters and brother have never been bitten by ticks either, and yet we are all positive for Lyme.
I never in a million years would have thought Lyme disease when I started getting sick. I thought I had some sort of long term brain damage from a car accident.
The saving grace for me was when I went to a message board, a Fibromyalgia message board, and one person (bless her heart) had posted a message saying that fibro could in fact be Lyme.
I ignored it for a few weeks and then revisited the idea out of desperation. I did a search for "LLMDs" and found this board.
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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lymednva
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Member # 9098
posted
I was Lyme "aware," but not literate.
I knew about the EM rash, and even wondered if the rash on my neck that I showed a duck the summer that my symptoms were going completely out of control could have been caused by Lyme.
He told me to use something topical on it and that made it worse. Friends suggested something else and it went away.
Of course the stiff neck, inability to relax at all, constant pain, worsening NMH, headaches, insomnia, etc., didn't go away!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I was clueless. Here I live in New England, received a Masters in Public Health (Environmental concentration) in 2000, have worked as a microbiologist for a number of years and had no idea of what was involved regarding this disease.
In fact, I remember getting the call from my doctor telling me I had Lyme (after 18 months of searching for answers and thinking I was going to die before they figured it out) and I cried thinking "that's all? Few days of antibiotics and I'll be better".
Little did I know.....
Posts: 561 | From mass | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i was dumber than a stalk of celery about lyme. after i got bit i got the classic em rash and started looking on the internet for pictures. nothing seemed to match except the lyme rash.
then i found out that doctors were even more clueless and useless than i was.
now it's frustrating to try to talk to people and their eyes glaze over and you get the ole "here she goes again" look.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Michelle M
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posted
Knew NADA. Zip.
In fact -- worse than that -- I thought there was no such thing in California.
I even saw my tick/EM rash and STILL thought it was nothing -- figured I just didn't get the tick out all the way.
Hah!
This was my ortho doc's recent response when looking over my medical/intake form a few weeks ago: "Lyme disease??? In California?"
Sigh.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
nope. Was so excited when i finally figured it out, then started researching and the dread came back ten fold!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
The only thing I knew was I liked lime in my drinks and pie. I did not even believe I had it because I knew so little about it.
Posts: 343 | From usa | Registered: Dec 2004
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posted
I couldn't hold a two minute conversation with you about Lyme disease.
I guess that would put me in the same percentile of most of our nation's Doctors. They can't hold a two minute conversation with us about Lyme disease.
After twenty months of antibiotic treatment and learning about the disease I can certainly hold my own in a conversation about lyme today.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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merrygirl
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posted
I knew about Lyme in dogs from being a vet tech. I didnt know much about Lyme in humans. I remember that I do recall some of the symptoms because I have been tested a few times in the past.
I thought 30 days of doxy and I will be good to go like most dogs. Boy was I wrong.
I knew about some coinfections but not a lot!
Posts: 3905 | From USA | Registered: May 2007
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Just Julie
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You would think that most outdoor people would know about it, or animal/dog people. I was both. I can tell you that the times and amounts that I spent outdoors here in northern CA should have me dead from lyme by now.
But, I did have some "subconscious" help, I guess. At the trailhead of the Briones Regional park systems, there is a big brown board. On it is "warnings" and messages for all those about to head out on the trail. In 1987, I got bit by a tick while hiking in Briones, back in the far brush, way off the trail. I remember seeing "warning, lyme disease is caused by ticks. ticks are found in this area" or some other such warning on the message/sign board.
I had graduated from nursing school in 1985, and I was working as a nurse in 1987 at a local hospital. I awoke one morning unable to turn my neck, it was so stiff, that my charge nurse told me to come in asap to the ER. They thought I had meningitis. or encephalitis. I worked on a dialysis unit there and could've had anything, even AIDS. But, as it were, the ER docs found a tick on the back of my neck, covered it with vaseline, waited a half hour, then got it out.
Of course I got lyme. About a month later, when my knees started to hurt so bad I could barely walk, I went to a rhematologist doc, and he gave me a lyme test. THIS WAS IN 1987!!! I think I asked for the test, remembering what the message board at the Briones park trailhead had said.
I was negative, of course, and my symptoms left me.
I was pretty healthy, kept hiking, camping, taking my dogs all over (Mt. Tam, oy) and eventually, my kids, all over the outdoors here in northern CA.
Well, my kids both have it, as does the husband. We live in an area with ticks out our backdoor (semi rural) and my cats have ticks all the time. They are outside only cats. I use Frontline Plus religiously.
I ask people here where I live occasionally if they know about ticks/lyme. I either get a non-comital type answer, or a brush off. Most folks don't know, don't care, and I am at the point in the game where I feel if they want educating, they know where to find me.
Ignorance can be bliss!
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
Nope. Thought you would have "swollen knees" if you had Lyme. Thought you would have a rash.
Never considered the fact that I'd had tons of tick bites over the years and was sick with "fibromyalgia." Trusted my doctors!
I do remember a young boy in our church who got Lymed when he was about 10. He was in the hospital and it took them awhile to figure out what was wrong with him.
I hope he got proper treatment and is doing well. Haven't seen him or his family in 30 yrs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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jamescase20
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posted
I thought lyme diease was a hypocondreac like illness and didnt really exist. !!!!!!!!!!!!! Boy I know I was horribly wrong!
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CaliforniaLyme
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Yup, like you Michelle M, I went, "How weird, a rash right where I got that tick bite!!!"
In fact, I thought all ticks were black.
My husband and I called our nymphal deer ticks: "Those weird slow red flea-things." NOT kidding.
Ho ho ho, what stupidity*)!
Didn't realize they were ticks until they were literally embedded in my *!&^~ and went, "OH, those are TICKS!!! YUCK!!!"
"Lyme disease? What's that?"
No no no no no NO clue at all...
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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p.s. In my defense, I was a city girl, from LA!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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shazdancer
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I knew to look for a "bull's eye" rash. I knew a former student who had had trouble with a swollen knee. In other words, I didn't know much.
But I knew more than the ER docs in one of the most highly-endemic areas of the country (Danbury, CT). I kept saying, "Could this be Lyme?" when I presented with a red and swollen hand. Couldn't be, said Doc #1. Maybe, said Doc #2, but I won't test you. Let's see, said Doc #3, who performed a test, even though he doubted it. It was CDC positive.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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pmerv
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I knew nothing about Lyme, but this was 1977. It had just been discovered.
What angers me deeply is the IDSA misinformation campaign that is responsible for people, INCLUDING DRS, remaining in ignorance. My own dad is NOW being patted on the head and told, "What do you expect at 92?" And he had a tickbite followed by rash and multisystem symptoms in Connecticut! I am so mad!@#U*$&$#()!
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Unfortunately no : ( I knew nothing..I even had a rash on my lower backside and me and my boyfriend made fun of it at the time!! not thinking anything of it. To this day I'm mad about that since I went through 3 years undiagnosed. If I just would of knew the warning signs for Lyme I would not be sick today
Posts: 370 | From NJ | Registered: Dec 2007
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posted
I was clueless! I knew nothing about lyme. It took ten years of going from doctor to doctor before I found one that mentioned and tested me for it. By that time I was so ill I was barely functioning. I was happy to finally have an answer but treatment has been longer than I expected. I am happy that we have this little piece of the web to chat. You all help keep me sane. Posts: 36 | From Greenville, SC | Registered: Feb 2007
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posted
No. Lyme disease was something that you caught on the East Coast.
Posts: 984 | From San Diego | Registered: Nov 2006
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sparkle7
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posted
I only knew that it happened to other people & then, they got some antibiotics & were all better... Of course, Lyme disease infected ticks always leave a bull's eye rash! That's how you know you've got it. And then, you get a test, right??? (PS - I'm being sarcastic if you happen to be a newbie.)
I live in the ground zero area of Lyme infection & saw a number of doctors who had no clue, either. So, don't think if you live in CA or OR (etc.) that you have a harder time finding a descent doctor who has a clue.
If only we knew as much about Lyme disease as what's going on with Britney Spears' custody battle or OJ...
This is why I suspect there is a cover-up regarding this illness.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Got bit in 2001 and around 2 weeks later got a big bulls eye rash on the underside of my right arm
My daughter who was in the 5th grade at the time told me she had seen a picture of that thing on my arm in a book she was reading about ticks. She said I needed to see a doctor about Lyme.
I asked one of my co-workers, who is from VA, and she said it looked like it could be lyme disease. I didn't know anything about it.
Went to the doctor, and he said he doubted it was "lymes" becuase we live in florida and its "Not Common" in our area.
He put me on 100mg Doxy per day for 14 days. It didn't do any good, started getting upper resp. infections, "rashes" kept appearing off and on and pretty much got told it was all in my head and needed to see a Head Doc to be treated for depression. In the last two months - finally got a correct diagnosis, and fixing to start treatments.
Yeah Me
-------------------- OK...I'll play your silly games.
Finding my happy place.
Brenda-Lee Posts: 126 | From Florida | Registered: Aug 2007
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lymebytes
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posted
Well - how familiar!!! My diagnosis helped diagnosis 5 members of my family. Had I never got lyme, they'd all still think they had fibro, chronic fatigue and were just going crazy. So for them my diagnosis was great!
I never knew LD was so wicked and could attack the CNS! Nerve pain galore for me.
We'd go camping and sleep on the ground in our sleeping bags! We camped, boated, golfed, ran our dogs in the field.
I was into animal rescue and was bitten by fleas hundreds of times, although I don't ever remember a specific tick bite.
My poor dogs have all been bitten, they are aging well for having Lyme (I know they all do) and yet when I told our vet I had Lyme, she said, 'Wow, that is very rare around here!' NO ...even the IDSA lists Northern California in the top 3 endemic areas.
Now I bet I could ask if you were W.Nile literate and everyone would say yes. Because the news coverage has been so informing. Time to start talking about Lyme, but will they ever?
map1131
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Member # 2022
posted
I knew nothing. I thought and told him I must have a severe case of food poisoning. He said tell me about the last 10 days and the symptoms.
After I started telling him my head to toe weird sx going on since I became sick on vacation at our lake home, he asked "Did you see a tick or tick bite?"
I looked at the doc dumb-founded when he said it's sounds like lyme disease. I know, I was blessed compared to many of you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Tracy9
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Not too much; but living in the center of Connecticut I had certianly heard of it. I even knew a couple of people that had it; but they appeard severe;Bell's palsy but then some weeks later were all better.
Looking back, I can think of so many people I knew that most certainly had Lyme disease. Until I got it 3 years ago, I never really knew that much.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
i have heard of lyme disease and it was from ticks, but NEVER had seen their photos or illustrations of them.
got to know a little bit more when an area IOWA woman, Gerri Fossen, 30, died from complications of it! i think someone wrote a letter to editor about her lyme situation.
i went to an area lyme support group meetings for 1 year after they advertised about talking about fibro, CFS, MCS, MS, etc.
i really turned my attention to speaker who talked about PRESSURE POINTS and lyme folks have them too; a connection .... FM/lyme, are they the same thing?
i was also the 1st locally to have my western blot igm/igg sent to igenex in calif; it came back positive and meeting CDC criteria!
my pcp of 24 years called to CONFIRM it, and i just laughed, "you're kidding"! i thought it was early Alzheimer's disease like my sis-in-law who died at age 40 of it! wished i'd heard of it then, and her blood could have been tested for lyme since my brother farms our century farm!
took mayo clinic, minn., 4 months for official autopsy death results. early AD!
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cantgiveupyet
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No, i didnt.
I was told you needed the bullseye rash to have lyme
I remember one summer running through tall grass chasing deer for a photo opportunity, my brother yelling to me about ticks. I said , ah doesnt matter. Thinking all the time, all lyme is , is joint pain.
i wish i had known more, the day i found the tick on me and the symptoms that followed, then the symptoms that vanished, and now the dibilitation i suffer with.
-------------------- "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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Vermont_Lymie
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I wish!!!
No treatment with my first two exposures. Then, with a severe illness following a tick bite; with bulls-eye rash, high fever, headaches, intense pain and fatigue, I went to the doctor and got 10 days of low dose abx. If I had been lyme literate I would have gotten proper treatment years ago.
Posts: 2557 | From home | Registered: Aug 2006
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Truthfinder
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posted
Like AlisonP, if I hadn't seen a post from a Lymie on a Fibromyalgia support forum, I still wouldn't know about Lyme....
I saved this thread.
This is EXACTLY what people need to see in local newspapers.... all the people out there from different areas of the country with Lyme who had no clue what it was, and neither did their doctors.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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dontlikeliver
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No, I was most definitely not Lyme literate. Lyme 'bloody' ignorant more describes me then. This is partly why my Lyme dx was delayed 15 years because I believed the docs when I was told I didn't have Lyme despite living in endemic area and knowing tons of others with Lyme.......but I figured, I had no BULLSEYE rash (but had other rashes) or joint pain, so it couldn't be Lyme. I had no idea that the other 1001 sx I had could be Lyme though.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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I live in Suburban, NY...."everyone" has Lyme disease here, yet the information most people know about Lyme disease, it's symptoms and treatment is sooo inaccurate I could just scream!
I was very under-educated about how horrible untreated and inadequately treated can become. I have been bitten at least 30+ times (That I KNOW of!)
I had the classic case of Lyme disease when I was 11 years old---Tick bite (Saw the tick and everything..)...Bells Palsy, Meningitis, Heart Block, Severe Arthritis in my right knee. I was put on 14 days of Amoxicillin. 3 days into treatment I was feeling HORRIBLE. I felt soooo sick, I had never felt that way in my life.....So, naturally my mom called our doctor to tell him how sick I was since starting the abx.
The doctor decided to stop my antibiotics (after only 3 days) and re-diagnosed me with Mono saying that I tested positive for EBV, so Mono could be a likely cause, since I had "Fatigue" and "Arthritis"....Does Mono cause Bells Palsy?? Meningitis???....HEART BLOCK!? I dont think so, and neither do any other of the doctors I have seen over the years.
3 months after my pediatrician stopped my abx. my right leg suddenly became paralysed, I could not move it at all. How horrible. I missed all of 5th, and 6th grade.
I got better though, once finally given high-dose IV antibiotics.
It was over. Finally. (We thought). 2 years later I was re-bitten, and I woke up without the use of either of my legs. Since than I have not been able to walk since. I have developed a severe seizure disorder, Guillian Barre Syndrome, Narcolepsy, I cannot eat or drink anymore due to Stomach Paralysis and I have a J-tube (feeding tube) inserted into my small intestine for food, as well as recieving TPN (IV nutrition) via my PICC Line and IV Hydration 24/7. I am on constant IV medications, and IV antibiotics, even tho I have been on a ton of IV antibiotics, my SPECT scan remains "Severe", and it is one of the worst the doctors at Columbia U. have ever seen.
I have a long, long way to go. If I get better.
So, the result of Lyme disease in my case? I lost the use of my legs, the ability to care for myself, the ability to eat and Instead of college, parties and friends, I have IV's, LLMDs, and doctors appt's. I was approved for SSDI as a teenager.
My case has opened many people's eyes to the devastating effects of Lyme, but look at what had to happen to get doctors (mainsteam) and other people to pay attention to the issue via my condition?
Posts: 29 | From New York | Registered: Aug 2007
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posted
I was in the military at that time, we were stationed near Ural Mountains when I got bitten by a f...ing tick. All I knew about at that time was that ticks spread encephalitis, no lyme, bart or babs. I was tested for it and it came negative. The truth came much later to me. I guess up to 95% of us here know nothing about Lyme
-------------------- ~From Russia with Lyme~ Posts: 34 | From Rostov-on-Don, Russia | Registered: Dec 2007
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I was in the military at that time, we were stationed near Ural Mountains when I got bitten by a f...ing tick. All I knew about at that time was that ticks spread encephalitis, no lyme, bart or babs. I was tested for it and it came negative. The truth came much later to me. I guess up to 95% of us here know nothing about Lyme
-------------------- ~From Russia with Lyme~ Posts: 34 | From Rostov-on-Don, Russia | Registered: Dec 2007
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posted
Just enough to be dangerous-----bad info + ignorance got us into this mess.
If I knew then what I know now..........wow! my family would be in a lot better shape.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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I knew nothing about Lyme before I became sick. I thought if you got a bullseye you had to worry. When my son got bit in 2001- I looked for that bullseye and it never came. However, he did end up having lyme as did myslef and all other members of my family. Only by my research, support groups I have gone to and the wonderful top of the line LLMD's have I acquired the knowledge needed to comabt Lyme and all the coinfections. It's said I knew nothing about this before and that is what angers me. Millions of children oare playing outside and parents have no idea what is out there. The public health systems do need to get more involved and plaster Lyme around instead of West Nile.....
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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I knew nothing at all.
Tick attachments were a way of life growing up in extreme southern Illinois. As kids, the woods were our whole world and a tick every few days just went along with that.
We knew to get ticks off quickly because, although we were in Illinois, in Colorado they could make someone sick, so my mom instructed us to put vasaline, nail polish or burn them out with a warm match stick (we now know that's not good).
Sometimes one would be found several days after being out in the woods, especially on my head.
In the early '70's, severe mono persisted for years in college - never thought to learn more about that. The doctors did not seem to think there was much to it.
In 1977, two days after a hike, it took me a whole hour to pull a tick out of the crown of my head. I never would have thought to seek a doctor's care to get it out or for anything it may have passed on to me. Soon after that drop seizures, severe flu-like symptoms forced me to drop out of grad school in Boston.
On the other coast in 1990, one holistic-minded MD who was treating me for severe CFS mentioned lyme - adding "but that's just too complicated. . . tests can't really tell us anyway . . . let's just focus on detoxing and nutrition and I'll bet this all clears up."
In 1995 or 96, a neuro-otolgist said I should get tested. My PCP did, she said it was "negative." I was not shown the test; later, I found out it was ELISA.
In 1997, I saw the book "Everything you need to know about lyme" at a bookstore. It just sort of jumped out at me.
I read about Western Blots - called the lyme support leader in my city, shared it with my naturopathic physician who then ordered IGENEX WB tests for lyme, babesia, and 2 kinds of ehrlichia. I had positives for one of each. A triple-hitter.
Took the tests, and ILADS materials back to PCP and she said "there is no lyme in this state." She said I was fainting due to psychological reasons. I was crying and depressed, but who wouldn't be, passing out all the time with a constant flu?
I went back to the neuro-otologist who seemed very interested to see the positive test results, but he could not treat it. For symtpom relief, he offered an inner-ear infusion of steroids to "help" the severe inner ear problems. I declined because I knew by then no one with suspected lyme should have any steroids.
So, with no LLMD then or now in my state . . . I was forced to learn more. Not by choice.
Actually, there had been a doctor (or two) whmo I later found out treated a few late-stage lyme cases but they had had their licenses revoked by our state's medical board for treating with long-term antibiotics. Any other doctor who might have been thinking of learning more stopped cold in their tracks. And, I've had MD's tell me that.
After reading about lyme, I also realize that I may have had the tiny ticks attach in years just before testing. I had been out in the woods and came home with what I thought were 3 tiny oil spots in a group on my hairline. I wondered how they got there, but what else could it be, I thought. I tried to scrape them off on and off for a couple days. Finally, about the third day, they just fell off on their own when I was not looking.
I had no idea then that ticks could be tiny, so did not know to consider that. But I've also had plenty of adult ticks - and what I now know may have been a bartonella rash back in college in the '70's when the "mono" just wouldn't subside.
Education - in all things. Education can save lives.
Naively, I'm sure, I hope that some medical colleges find this bulletin board and learn from what we share so that others don't have to live as we do.
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Of course, I knew nothing of co-infections.
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Every other disease is readily discussed on TV, the radio, by your doctor, but then when anyone says Lyme Disease it's like someone said a bad word.![[confused]](graemlins/confused.gif)
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