posted
I know everyone on here just about has been thru the revolving doors of doctors before they were diagnosed and finally knew what they had
So what steered you towards your lyme diagnosis?
For me I just knew I had it. everything else was checking back fine and I had two bands positive IGM and IGG
All the docs tried telling me no but I just knew it was lyme. I had this strange gut instinct telling me. and thats why I went to get treatment. its such a shame that people suffer endlessly for years and years. its really rediculous.
so how did you finally get ur answer?>
Posts: 995 | From somewhere out there | Registered: Oct 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
After getting a Fibromyalgia diagnosis, one year into my illness, I was just not able to accept that. It seemed a ridiculous notion to have an illness of unknown cause and cure. One that came on so sudden.
I didn't accept it and I started researching on my own. Took another year to discover LD and the long list of symptoms that came with it. Once I saw the list of symptoms, I knew right then thats what I had. Like you, it was a gut feeling. I knew I had discovered my illness.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
^ I had a rheumy try to diagnose me with fibromyalgia. I pretty much laughed in her face. I agree about it having no known cause and all that and how rediculous the thought is.
I remember looking at the rheumatologist and saying "ok what can be done about that?" and she just said "nothing you have fibromyalgia for life and you get put on antidepressants"
I then showed her my IGM positive lyme test and she told me not to worry at all about that. if i had any lyme disease it would be wiped out COMPLETLEY with the 200 mg a day of doxy i was taking for acne. I just knew it was all a crock of crap
blah blah blah.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
lymegal, I had the very same gut instinct as you did. After I got those tick bites on the cattle drive in May 2010, when I started becoming lethargic and fatigued in June, I immediately knew. I just knew it...then the red spot appeared on my right arm about a month after I was exposed to the ticks. Just a red bump.
After the herx hit after 1 week antibiotics, it was confiremed, even though I didn't have a bunch of positive bands. Even Igenex test was IND. Regardless, we know our bodies better than anyone. I knew I had it in my blood.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
I suspected lyme in 2001 based on my symptoms and tests for other things like MS coming up negative.
17 doctors from 2001-2008 and the 2nd one was infectious disease. Asked about lyme and he said no for all the reasons I know now are complete bs. At the time I didn't know better and unfortunately trusted him.
2008 ended up in ER with meningitis. Spinal tap had bacteria but they didn't test it for which kind and I was too out of it to request that.
After meningitis was under control I had some lyme tests done by a local ND. Igenex WB and urine pcr were both positive.
Been treating since Nov 2008.
Posts: 186 | From colorado | Registered: Jul 2010
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onbam
Unregistered
posted
Encephalitis striking 7 days after my tickbite, while I was taking the CDC's worthless 200 mg/Doxy. The diagnosis came 5 months later, when I could get in with a doctor.
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
A fight with my husband.
I was turning 39 in a few days, and somehow he was still expecting a "miraculous" recovery so we could start our family. He also still believed in doctors. HA!
I told him I wasn't going to turn 40 feeling like I felt turning 39, which was the same way I'd felt for 15 years. I was done. I didn't care if we lost our house, jobs, anything. I'd hit Lyme bottom.
He yelled the most condescending "Well what are YOU going to do about it?!"
I said I was going to spend the next year ruling out everything I could think of, and I was starting with Lyme.
I had received an ART diagnosis of Lyme by an ND (trained by the illustrious Dr. K) and some absurdly minimal treatment that got me nowhere. I knew it hadn't been properly ruled in or out. That's why I started with Lyme.
I found my doc on the Web, and one month later my labs were back and I was in treatment.
My husband tested and began treatment the following month.
BTW, he's really not a jerk. He gets passive-aggressive when frustrated. The Lyme doesn't help. Both his health and attitude have improved tremendously since beginning treatment.
posted
Ha! Well, I initially "discovered" Lyme on the internet. We had been searching for SOMETHING, anything.
My Aunt told us about a web site called "just answer" where you could pay a minimal fee, enter your symptoms and chat with a real Dr. and get some advise. So we tried it. Lyme was his top suggestion! BEST $40 ever spent!!!
However, as so many people know, figuring it out can be the easiest part. My Dr didn't know thing about Lyme so it wasn't until a year later when I saw my sister's Dr in Oregon, that I was officially dx and started on treatment.
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
I never would have thought Lyme. I was always bordering on *sick* and fatigue was just a part of my life. A Dr. my kids were seeing was a secret LLMD and dx'd me clinically (as well as my kids) based on our collection of symptoms and CD57 which was 19. I didn't believe him. Later I was dx'd with CFS, which I thought was a trash can dx. When I finally accepted the fact that it was probably Lyme, the original Dr would not take me back via my insurance. I would have to pay out of pocket...which I cannot afford to do.
Now I am mostly on my own, sans some help from a somewhat open-minded Immunologist willing to entertain Lyme (but not put it in my record...thankfuly)
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
At age 45, after many years of symptoms and complaints to my dr. I pleaded w/ my new family dr. that something wasn't right.
I told her I felt 85 yrs old not 45 yrs. old.
She ordered everything she could think of and threw in a Lyme test.
I had a friend of mine, who is practically bedridden with Lyme, keep telling me to get checked.
I said, no it's Fibromyalgia-it made sense.
Western Blot came back positive and here I am:)
Posts: 412 | From Virginia | Registered: Sep 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
the internet.
after being sick since, well, the early 70's and loosing my first husband and all, then having to retire from a job i liked, i started really being pro-active.
sure nuff, found it almost immediately on the web.
to bad, i can't find a doc to listen. and no, i don't travel.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Bitten 25 years ago, bullseye rash in different part of body, never thought about either again and didnt know they were connected. Roll on 5 years and a major surgery unleashed the hell that is lyme and co.
Never told my doc or anyone because I thought I was insane - how could something possibly cause all my issues? I just knew that something was terribly and drastically wrong.
A woman walked into our office and plunked lyme disease leaflets on our desks. It was my 'A-HA' moment - hit me like the proverbial sledgehammer as the leaflet 'was' me to a 'T'. Been treated for lyme and bart and improving slowly but surely.
Posts: 234 | From BC Canada | Registered: Aug 2008
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posted
I was told I had EBV and needed to rest, eat right, etc. and it would take awhile to get better. I found my terrible symptoms coming back again on a regular basis - about monthly.
My father is a veterinarian and he started suggesting lyme after about 4 months or so.
The internet helped me find others with symptoms like me. The doctors did not help. They only kept me from tx for awhile.
Posts: 93 | From arizona | Registered: Oct 2010
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posted
bellajo most of our local vets advertise about lyme and to protect your pets. however the doctors here say its NOT here. If I were a dog or cat I would not be bankrupting myself to leave Canada and go to the USA for treatment. It sucks.
Posts: 234 | From BC Canada | Registered: Aug 2008
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Had 90% of symptoms, they all said it was in my head, I knew that was BS.
Follow your heart, you'll find the answer...we all know the doc' lie, it's all politics!!!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
One heaping helping of TuTu when I was a newbie!!!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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My story is that I was looking for help with my candida issues and landed in the office of an LLMD!! (I knew nothing about Lyme and had no idea he treated Lyme disease.)
True Story!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Camp Other
Unregistered
posted
I got bit by a tick. It wasn't until a few doctors later and treatment I did not react badly to that I began to see results. I knew about the Lyme early on, didn't know about the Babesia until later.
posted
I found myself in a vitamin store after an MRI on my head diagnosing me with optic neuritis. The shop owner asked if I needed help and I burst into tears. She listened to my story and said I sounded a lot like her 10 years ago -- she had battled lyme for a decade. I got the number for an LLMD from her.
Posts: 45 | From New Jersey | Registered: Sep 2008
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Doctor's could not figure out my daughter's symptoms...researched it myself on the internet...concluded early on it was LD, but of course not one doctor would consider that...nearly four years later took her out east to a TBD clinic and got a diagnosis.
If I had to do it all over again...I should of gone to Mexico and bought the antibiodics myself so she could of received treatment early on...that is my heavy regret.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Went to doc who saw inflammation on test. Sent to Rheumy and tested me for everything. Remembered the weird rash on arm and saw YouTube videos about symptoms. Rheumy said I didn't have Lyme since Elisa came back negative but i talked him into giving me doxy and started getting much better, then on to LLMD and here I am.
Posts: 96 | From Missouri | Registered: Oct 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I came down ill in the summer of 99. Thought the first day it was the flu. Within 24 hrs I knew it wasn't the flu.
I was scared to death because I knew this was something bad. Early on I named it the illness from Hell.
10 days later still ill I told my primary care dr that I must have food poisoning. He listened to my long list of sx...
He actually recognized possible lyme sx and started abx. He and I didn't know that I had sx coming and going for 6+ months prior.
I was already chronic at that point. This doc was throwing every abx and combo at me. But at least I knew early on what I was fighting.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I had bad back pain for 27 years, diagnosed as Fibromyalgia and other things - even had two doctors do surgeries! Nothing helped.
Meanwhile my daughter had one health problem after another culminating in sudden severe symptoms at age 13.
She went to a small school with 46 kids. Another mother and her kids had Lyme. She suggested we get my daughter tested when all the other tests came back fine.
I had been tested twice over the years for Lyme, but not through IGenex.
Since we've helped two other moms and their kids at the same school get diagnosed and in treatment.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It wasn't Alan "Steere", that's for sure. Get it?
-------------------- 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.
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