randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my dog's vet told me i had lyme before i even knew about it. he was right.
so who diagnosed you?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I figured it out, called IGeneX, got a test kit sent to me, took it to my doctor who said I did not have Lyme but she would give me the test to get that idea out of my head so I could heal from Somatization Disorder.
When the test came back with 8 positive IgG bands, she said I had Lyme in the past, but now I had Somatization Disorder. Needless to say, I found a new doctor.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I figured it out myself. No doctor was helpful whatsoever and I was sooo sick and scared and felt like I was on the verge of death and no doctor or even the ER helped, so I ended up the one place doctors tell you not to go to look up symptoms and what they could possibly be connected to - the Internet (I typed in my list of symptoms and Lyme kept popping up). I'm lucky that I did though and didn't listen to doctors because otherwise I don't want to think of where I'd be or if I'd be.
Later, I found the right doctor - LLMD.
-------------------- 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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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
An endocrinologist.
I went to him because my diagnosis of menopause just didn't fit all my symptoms.
He said it sounded like lyme disease or fibromyalgia and tested me for lyme.
This after going from doctor to doctor for 5 years, including Johns Hopkins where the endo there thought I might have a brain tumor.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Me, but later confirmed by LLMD.
Posts: 526 | From NJ | Registered: May 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I figured it out myself, thanks to the internet.
None of the 40 to 50 doctors I have seen over the years was any help at all.
My LLMD confirmed what I alredy knew.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I figured it out myself and then found a good LLMD who confirmed it.
-------------------- 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
My G.P. who is an internist dx's me and put me in the hospital even before he had the dx. He has also just wrote a letter stating I have lyme disease for my SSDI process.
We are making some headway here. He is a younger doctor. Perhaps through all of your hard work, it is starting to come to the forefront.
Although he is not lyme literate, he does admit that in the "dr. community" there is so much controversy.
On that note, I have been to an ENT specialist for constant sinus infection. I was told it was "stress" and I should go fishing more!!!
This Monday I have an appointment in Nashville with a Neurologist group at St. Thomas Heart Hospital. This is my second neurologist. Legs are spasming constantly for 2 months. All blood tests are good.
We'll see how the "next group" does. Maybe they'll tell me to "Go jump off a bridge, while I am fishing"!!
Sheesh....When the heck am I gonna suck it up and go to an LLMD? I'll think about it while I'm "fishing". Posts: 145 | From Paris, Tn. | Registered: Dec 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Well, me... after I told my MD something was very wrong. I asked to be tested for lyme in addition to the ones he was ordering. Luckily, he listened.
A second stroke of luck: I was CDC positive if you can believe that!!
YUP.. pure luck. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
my general practitioner believe it or not, but then when I called to make another appointment her receptionist told me to find another dr.
Then I ordered the Igenex test and took it to my doctor and she signed off on the test. When the results came back, her nurse called to tell me that the "Dr. doesn't think you have lyme."
I asked for a copy of the test to be sent to me, and I researched it and even spoke to the Igenex Dr. I was Igenex positive.
I then went to a LLMD. After 5 months of tx, I am feeling much better.
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
A non-LL nurse practitioner who asked her friend, a vet, for advice.
So - basically - a vet.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
randi, The vet "told" you that you had Lyme. But who officially diagnosed you? And were any blood/ lab tests positive? Just curious.
As for me, my PCP suspected it 'cause of where I lived & the type of unrelenting pain I had in 1 rib! (Plus the increasing overall fatigue)
I was lucky. My initial titre was 4.4 & the IgG ws all lit up. (If 1 can consider that "lucky" :/~ )
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
sixgoofykids, What a wild story! She said you HAD Lyme... but WHAT?... it went Away by itSelf?
The local ER had labelled ME with somatization disorder, but my PCP (after seeing MY + IgG bands) asked, "Were you bitten by a tick?" I said, "Yes!", showed him where, and he sighed, "WELL, i guess you have LYME disease!" (& I was thinking "OK, so give me some Pills & let's clear this Up." Ha! How naive I was at that point.)
SAY... does anyone wonder why "somatization disorder" was NEVER MENTIONED in U.O.S.? Everything But. My LLMD listed it in HIS list of misdiagnoses when he was interviewed by a paper... & I'd never told him of the ER reports.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
An acupunturist I met at a conference out of town first suggested it to me in 1990. I came home, went to public health dept. and had an Elisa test - negative. (all those wasted years!)
I was diagnosed because my daughter was diagnosed by me after many conversation with a friend who was on IV abx and her whole family was infected.
We live in a relatively lyme-free area, but interestingly, three of the only 39 families at my daughter's school are dealing with congenital lyme.
-------------------- "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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bettyg
Unregistered
posted
me after i heard a animal vet talk about fibromyalgia pain, chronic fatigue, etc. at an UNADVERTISED LYME meeting.
i was 1st in this support group to use igenex;s western blot igm/igg blood test. they'd never seen so many positives before!!
then my PCP of 25+ years CLINICALLY DIAGNOSED ME! he'd had me the entire time, and gone thru all thise with me. i was his 1st lyme patient. he said, "you taught me 90% of what i know; internet taught me the other 10% "!
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i guess the vet told me i had it, then i went to a "lyme" doctor who turned out to be abusive and crazy. he actually did my first igenex test but because of problems, i quit going to him.
so the vet first, then clinical diagnosis was a neurologist...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
My hemotologist. He was running a panel of tests on me that just happened to include a test for lyme, through Labcorp of all places. When it came back positive even the infectious disease doc at the hospital didn't know what to do with me.
After all, lyme doesn't exist in TN - LMAO!
Posts: 90 | From Knoxville, TN | Registered: Jun 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
My ND diagnosed me based on symptoms, LLMD later confirmed with positive lab results.
Posts: 5237 | From here | Registered: Nov 2007
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posted
My LLMD!!!! I heard from my naturopath, who was helping me treat yeast, that this dr was HIS doctor and knew how to treat yeast. ( with prescriptions, of course )
So I went for yeast treatment and I also had "fibromyalgia" .. That was his signal to test me for Lyme.
The rest is history.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
A brilliant neurotogist told me to get tested. But had not told me that my MD would use the wrong lab and drop it when it first came back negative.
And, he still really pushed for me to to a steroid infusion into my ears, which could have been devastating with lyme. So, he knew some about lyme, but not everything.
He was right, though, that lyme was the culprit and likely connected to lots of the inner ear dysfunction.
I later saw the book "Everything You Need To Know About Lyme" in a book store and it said that a special lab is often needed.
My MD would not re-order lyme tests or any other tests for other tick-borne infections -- so my ND did - from Igenex.
Positive for three: Lyme, Babesia and Human Monocytic Ehrlichia. But my MD would not even take the test results or the ILADS treatment guidelines out my hands.
Even with seizures, fainting, severe hyperacusis and so much pain and joint problems, she simply said that all had to be psychological because "There is no lyme in Oregon."
She never asked when I first got ill or what other states I had entertained ticks in - or where the ticks I got in Oregon landed on me.
Still, there may be a couple lyme-friendly doctors who quietly work with patients who see experts out of state, but there is not one LLMD in my state. The Oregon Medical Board has seen to that.
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