posted
How many doctors and how many years and who finally diagnosed you?
If possible how often did you hear nothing was wrong, all in your head, etc.
Misdiagnoses too.
It took 3 years for me to be diagnosed.
I was told 15 to 20 times by doctors I saw that nothing was wrong, I didn't look sick or in pain.
3 doctors handed me a psychologist card.
I even had a doctor call me on the phone before my appointment and tell me he doesn't see fakers.
I was going to see him for Multiple Chemical Sensitivity.
Finally a TMJ specialist believed my symptoms and sent me to a doctor.
Who at my request did a western blot test from IGenex.
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I saw about 6 doctors during a 2 year span before I found out about LD. Not one of the 6 ever mentioned LD to me. I was misdiagnosed with FM, which is very common with LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
i consider myself really lucky.. i was really sick for a month... i was told i had gastritis, virus, and an allergic reaction to cipro prescribed for a UTI (I now know that was a herx).. anyways, I went to 2 doctors in that month.. Then I went to a doctor to get advise on detoxing from the "cipro reaction" and he looked at my blood work.. (I had previously asked for a lyme test but never saw the "negative" results).. This dr saw one positive band and was convinced I had lyme.. so thankful for him.. from there I went to see an LLMD
Posts: 245 | From East Brunswick, NJ | Registered: Oct 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I saw 4 different doctors the first year I was sick (saw the first one for several months as she said I had mono). Stopped going to doc's after the last one told me I had CFS, figured I'd have to find my own way out of it!
Then I saw a few other doctors after this. I always just told them that I had been really really sick and no one was really sure what was wrong. One acted interested and tested me for the virus that causes mono and told me that I was neg, said I couldn't have had mono (which I knew when I didn't get better!). So just a little over 12 years for a diagnosis for me.
counseling/psychiatrist ... perhaps 4-6 times mentioned!
LYME NEVER MENTIONED!! I discovered what i had!! **********************
STATISTICS ... LYME POLL by Tincup posted March 8, 2005,
Lyme Disease Survey Responses, FINAL RESULTS shown below! February 27, 2005 - March 9, 2005
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed - 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses? Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
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posted
I diagnosed myself after reading a pamphlet about Lyme. Was staggered to see my symptoms on paper and linking for the first time the tick to the rash. Many tests over the years, all came back normal/negative, the closest I got to being diagnosed was a pshychiatrist (sp) who I saw for a year for depression etc who kept on saying 'there HAS to be something else going on here'. So close but so far..
Posts: 234 | From BC Canada | Registered: Aug 2008
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posted
Initially got sick 1993, just diagnosed yesterday! Defintley a mixed emotion.
Can't remeber how many docs.....I finally quit going until recently.
Here's some of diagnoses:
Duke - I am a woman and women tend to worry and therefore I caused all of it.
docs told me: anxiety, MS, Lupus, Fibromyalgia, CFS, Phychosymatic (don't think I spelled that right but oh well) and so on
Just this August, I had an MRI of brain (no contrast)cause I react weird to meds and an Elisa test. I had to call ofcourse for results and I was told they were negative and normal MRI.
I requested the results. Elisa was equivocal and MRI said I had that hyperintensity white matter in all of my brain. So how the *** could they say it was normal and negative.
I got another doc last week to do a western blot and it was positive. Go figure!
Then they told me I need an infectious disease doc, so I call the hospital near me, very well known, and they told me I probaley didn't have Lyme, because it does not exist in NC. And that people they see for Lyme really have something else. So I said , "so u don't believe in the western blot" and she said "no".
So I have waited 16 years for a diagnosis, finally get it, and can't find a doctor to treat it.
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
10 years for diagnosis. I saw about 10 Dr's over that time. but, I was relatively healthy most of
those years and stopped looking for answers; until I was bitten again and went downhill fast.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
husband was bit in 2000..didn't get sick until 2001...saw about 10 drs...had a spinal, had his temples cut and biopsy...had accupuncture...mri, mra...all types of blood work...and a bag full of meds that of course did nothing...in 2006 we met a nice man who askd a few question of my hubby and said i think you have Lyme...told us of his story and gave us his drs name...so for 2 years now he is in treatment and taking it one day at a time...we all know it can take along time when you've had with no dx...so sad that it has to be this way...
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Came down to sick to work or do household chores or fix meals, etc in Oct. 2001.
Started looking for answers. Lost count at 35 specialist and 7 primary doctor's and 3 different insurance companies
Finally dx 18 months later by a primary doctor I paid out of pocket to see.
He knew enough about the lyme symptoms and to test with Igenex Lab.
Took him 3 months to get back to me. I was too sick to drive the 2 hours or so to get to his office.
Then contacted LDA for lyme specialist in CA.
Only have had one doctor who accepted insurance agree with lyme dx. But insurance ran out before I could see him.
Since I all ready was seeing a lyme specialist at that point I wasn't really concerned about seeing him.
Point being, that most doctor's who take insurance were of no help. They just shook my hand charged the insurance company and saw me for a few minutes. So sad.
Even saw a primary doctor whose mother in law died from lyme disease. He had not done his homework. And said the insurance would only allow him to see me for 5 min on our next visit.
he charged me $175 to just ask me the same questions verbally that I had just answered on his intake form regarding family history.
Sad state of affairs. He was just starting a business. His business failed and he had to leave the area.
This is not acceptable. I don't know what the answers are but this needs to be changed.
Another post might be on what are the answers to changing this. HOw can we each do something to help.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
18 years. Bookoo doctors. Had an ELISA 18 years ago...wonder what the results were. I had no idea about lyme back then, but know that I was given the test. Also know that I had high EBV titers back then.
Oh well, hindsight is useless. Had a WB Aug. 2007 9 bands positive IgM.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I have just about all of my medical records which is where I got their names and specialties.
There are so many I can't add them up anymore:
4 GPs; 3 DOs; 5 Family Practice; 8 Neurologists; 2 Neurosurgeon; 4 Hematologists; 7 ENTs; 2 Clinical ecologists or environmental med docs; 6 Endocrinologists; 6 Rheumatologists; 2 Psychoterapists; 5 OB/GYNs; 9 Gastroenterologists; 2 Podiatrists; 4 Pain management specialists plus 12 Fellows studying the pain management model; 1 Uro-GYN; 7 Internists; 2 General surgeons; 1 Plastic surgeon; 4 Pulmonologists; 2 Cardiologists; 1 Acupuncturist; 2 Opthalmologists; 2 Nephrologists; 12 Critical care or ER doctors; 9 Orthopedic surgeons; 3 Nurse Practioners;
Plus far too many interns and residents to count during 6 hospitalizations with the longest being 3 weeks in 3 different hospitals in neuro intensive care;
Add in the doctors who participated in the 14 operations I've had. Can't tell you how many there were because I was asleep.
And best of all is the "cake topper" -- one 79 year old-coot Neuropsychologist. He wanted to talk more about the quality of my husband's erections than my facial seizures and numbness. As in does my husband need Viagra?! Did my husband have ED?
Could this be the reason why I couldn't hold a fork and manage to get some scrambled eggs into my mouth? Why I was stumbling and falling down as if I was drunk? Why I was walking into walls? Why one ER doctor asked me if I was high? Why my EEG was labeled as "slow"? Why I couldn't pass a neuro exam or be oriented to person, place or time?
The Viagra conversation was conducted during rounds with 12 other doctors in my hospital room. Not one of them had the courage to speak up while this doctor humiliated himself by tormenting me.
Of course the neuropsyche misdiagnosed my facial siezures as epilepsy. The best part of the whole ordeal was the undiagnosed and untreated tick bite on my right leg which they thought was a "spider" bite.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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On the way to no Lyme diagnosis, I did see: an acupuncturist a-needlin' me.
On the way to no co's diagnosis, I did see: Two neurosurgeons, and an acupuncturist a-needlin' me.
On the way to no clue, all these doctors I did see: Three DOs, two neurosurgeons, and an acupuncturist a-needlin' me.
On the way to insanity, these doctors I did see: Four pain docs, three DOs, two neurosurgeons, and an acupuncturist a-needlin' me.
On the way to the funny farm, these doctors I did see: five ENTs! Four pain docs, three DOs, two neurosurgeons, and an acupuncturist a-needlin' me.
On the way to the internet, these docs I first did see: Six rheumatologists, five ENTs! Four pain docs, three DOs, two neurosurgeeons, and an acupuncturist a-needlin' me.
On the way to self-diagnosis, all these I did see: Seven in-ternists, six rheumatologists, five ENTs! Four pain docs, three DOs, two neurosurgeons, and an acupuncturist a-needlin' me.
On the way to my own sleuthing, all these I did see: Eight psychotherapists, seven in-ternists, six rheumatologists, five ENTs!
Four pain docs, three DOs, two neurosurgeons, and an acupuncturist a-needlin' me.
On the way to my own diagnosis, I did see: Nine nurse practitioners, eight psychotherapists, seven in-ternists, six rheumatologists, five ENTs!
Four pain docs, three DOs, two neurosurgeons, and an acupuncturist a-needlin' me.
On the way to my own diagnosing, I did see: Ten GI specialists, nine nurse practitioners, eight psychotherapists, seven in-ternists, six rheumatologists, five ENTs!
Four pain docs, three DOs. two neurosurgeons, and an acupuncturist a-needlin' me.
On the way to our Lymenet, these doctors I did see: Eleven ortho surgeons, ten GI specialists, nine nurse practitioners, eight psychotherapists, seven in-ternists, six rheumatologists, five ENTs!
Four pain docs, three DOs, two neurosurgeons, and an acupuncturist a-needlin' me.
On the way to this last verse, these specialists I did see: Twelve ER doctors, eleven orthosurgeons, ten GI specialists, nine nurse practitioners, eight psychotherapists, seven in-ternists, six rhematologists, five ENTs!
Four pain docs, three DOs, two neurosurgeons, and an acupuncturist* a-needlin' me!
*Apologies for not getting all of Munch's list in - substitute others in at your own discretion...
Posts: 13116 | From San Francisco | Registered: May 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Robin
I guess I am fortunate also.
When I really got ill (couldn't walk or talk),
I saw 4 doctors in two months.
I googled my symptoms and voila!
Finally convinced a local doc (via Quest) to test me for Lyme.
So glad I did.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
UP!
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
In a period of two weeks I saw one family physician, one dermatologist, and one LLMD.
The LLMD made a diagnosis based on my history, clinical signs, and the photos of my rash.
The family physician poo-pooed my concern about Lyme when I first went in with the rash that had grown a couple inches in diameter overnight. The rash appeared one week after I had pulled a tick out of my skin. He was kind enough to write a Rx for 10 days of doxycycline after I begged for it.
He refused to write more than 10 days worth of doxy when the local pharmacist called him and told him 21 - 28 days were recommended.
The dermatologist helped diagnose the first case of Lyme in our state. He was a little more concerned. He wrote a Rx for some more doxycycline...still a smaller dose than recommended by LLMDs, but it coevered me until the next appointment.
I was able to get into see a LLMD specialist quickly, and was diagnosed and started appropriate treatment.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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