------------------ C O L O R A D O * S U P P O R T * S Y S T E M [email protected]
Posted by Aniek (Member # 5374) on :
At least 14.
This number is low, because I don't know every doctor I saw when I was in high school.
Posted by lhm312 on :
Two, I was very lucky and hit the jackpot right away with an LLMD.
Posted by Paisley (Member # 6502) on :
Just off the top of my head...46...I would have to check med records for more.
Posted by Corinne E (Member # 4670) on :
2 - family doc wouldn't send me to anyone else, said he could treat everything. Then eventually found the only LLMD in I suppose at that time Canada.
Posted by yankee in black (Member # 4309) on :
One, I got real lucky
Actually I questioned the doctor if it was the right DX, and the second opinion agreed with him--that it was borrelia
Posted by HaplyCarlessdave (Member # 413) on :
3.
Posted by shadow13 (Member # 1467) on :
Close to 20 during an eleven-year period and living in two different states.
Posted by dontlikeliver (Member # 4749) on :
In 14 years, probably somewhere around 25.
DLL
Posted by shassler64 (Member # 3479) on :
5 docs
Posted by DC (Member # 6633) on :
The very first one I saw and it was at one of those "Stat Care" places.
Posted by CA quest (Member # 6827) on :
16 doctors over a 3 year period. (at that point self diagnosed & LLMD & WB confirmed)
Posted by Troup Brazelton (Member # 6297) on :
1 -didn't have a clue (GP) 2 -neuros = CFS 1 -neuro = ALS 1 -LLMD =lyme for a total of 5
Posted by duramater (Member # 6480) on :
4.
Posted by lynnic86 (Member # 3634) on :
at least 15 over a 15 yr span of time.. only dx in the past 4 yrs.. since then only 5
Posted by kam (Member # 3410) on :
35 after my body crashed in Oct. 2001
? during 80's and 90's but ignored symptoms most of the time and would only see doc when I would realized maybe something needs to be done. Found it didn't help so went back to ignoring symptoms if at all possible or rather avoiding docs.
Note: I had an HMO when this first hit, then a PPO and now MediCAl. Each group would not accept the other groups records so they all did the same testing 3 different times for the same things.
I was told that testing for MS, Myasthenia Gravis, ALS, etc. was often inadequate so they wanted their own people and labs to tdo them. NOT very cost efficient, but I needed to jump through the hoops in hopes of getting results.
I also had to do see Workmen's comp docs and SSDI docs.
Very few seemed to have the goal of getting my health back and finding out why it went south.
I haven't finished with UCSF and SAmsun Clinic. Ran out of insurance with Samsun Clinic. And really didn't feel it would be worth all the time and effort and cost of traveling to UCSF anymore. Last I left off with them, I was told I didn't have ALS, or Myasthenia Gravis. I was to return to the MS Center doc for further consultation. A pulmonologist was also mentioned.
But, gee's or peat...enough is enough. It takes so much out of me just to make the trip financially and health wise. You got to wonder if it is really worth it when two out of four neuro's just want to put you on antidepressants even after you tell them you tried that and it took the wind right out of your sails or other hazards to your health.
[This message has been edited by kam (edited 27 February 2005).]
Posted by monkeyshines (Member # 6406) on :
8 MDs
5 alternative practitioners (to try to treat symptoms pre-dx)
Posted by Mathias (Member # 5298) on :
14
Posted by Lymetoo (Member # 743) on :
I really have no idea since I've had this almost all my life and to my knowledge was never tested for it.
So maybe 40?
------------------ oops! Lymetutu
Posted by ShelleyA (Member # 49) on :
10+ ?
But...........1982 PCP tested 1992 PCP suggested 2001 another doc with true diagnosis
Posted by lymiecanuck on :
11+
lymiecanuck
Posted by NP40 (Member # 6711) on :
Anybody have a calculator ? 18, I believe.
Posted by Ms. Myoclonus (Member # 6750) on :
13
Posted by kare (Member # 5041) on :
4
Posted by TheCrimeOfLyme (Member # 4019) on :
22
Posted by long2bbetter (Member # 6792) on :
18 and counting.
Posted by daniella (Member # 6753) on :
Around 45. Over the course of 6 years...duck duck duck duck duck duck oh another duck duck finally a GOOSE!..
daniella
Posted by GEDEN13 (Member # 4151) on :
gp said , i don't have lyme.orthopedist found it during preop...so i guess that's 2?
now i'm "cured"..damn fibro !! gary
------------------
Posted by Coyotecrazy (Member # 6707) on :
13 - in 2 years -
Posted by bg (Member # 46416) on :
50 plus; dx 7-04 and 34 years misdiagnosed! ============================================
Posted by Coyotecrazy (Member # 6707) on :
daniella, your response made me LMAO !!!!! Thanks !!!!!
Posted by HEATHERKISS (Member # 6789) on :
on my 12th doc over seven years.
Posted by deb obrien (Member # 5239) on :
30+ (15 +md's, 15+ alternatives)
Posted by firecop1066 (Member # 6920) on :
15...3 internists 2 ent's 1 allergist 2 rheematologists 1 psychologist 2 podeiatrists 1 neuropsychologist 1 naturopath 1 accupuncturist 1 chiropracter 1 maseuse AND now 1 LLMD so I guess the total is 16!!!!
[This message has been edited by firecop1066 (edited 27 February 2005).]
Posted by SuZ-Q (Member # 5903) on :
12-13 over a 6 year period before our daughter was finally diagnosed.
Posted by Pitnum (Member # 4906) on :
2
Posted by arg82 (Member # 161) on :
I was very lucky and only saw 3 or 4 before getting a diagnosis. However, at this point I've gone through over a dozen doctors in my treatment journey.
12 from May 2004 - November 2004 when I got so sick...of course now looking back you can add about 10 to that figure. This is not counting my Mother's Dog's veterinarian who took one look at me and told me I had lyme disease and possible coinfections...amazing, no charge and he didn't take one vital reading...and no, my nose is not cold and wet nor do I have four legs Posted by James H (Member # 6380) on :
Just ONE... Thanks to some very nice people here we were spared a whole bunch of medical abuse!
...A few more if you count the ones that refused to even give an appointment once thay suspected the "L" word might be involved. But you asked how many we SAW.
Posted by hiker53 (Member # 6046) on :
11
Posted by Biting Back (Member # 6018) on :
120 plus.
Posted by JillF (Member # 5553) on :
12 including an ER doc and a LLMD who did not help me or consider me diagnosed with Lyme
Posted by Nancy2 (Member # 95) on :
7
Posted by treepatrol (Member # 4117) on :
Some of the same DRs but different years 15or16 then I looked for a LLMD
Posted by achey (Member # 6284) on :
hum... high school...2 college...5? rest of 20's....7 30's...13? 40-45...8?
So total would conservatively be around 35 including specaialist and alternative
Posted by ShadowHawk (Member # 6263) on :
Just 1...for a diagnosis.
It's been 14 years and 30 - 35 doctors getting someone to treat it.
Posted by ConnieMc (Member # 191) on :
6
I eventually figured out myself what was wrong with me and went to a LLMD.
Posted by map1131 (Member # 2022) on :
1st doc, originally from Northeast. Knew the symptoms.
Pam
Posted by sapphire101 (Member # 6638) on :
23+ over the last 15 years.
Posted by lymebrat (Member # 3208) on :
6 ducks...
And I had a very distinct Bull's-eye rash and remembered pulling the tick of the same exact spot 2 days before
quack quack..
~LymeBrat
Posted by hopeful123 (Member # 3244) on :
very lucky in this regard.
someone at work with chronic Lyme turned me on to a specialist.
I would say, one.
This is not to say that I didn't have symptoms I attributed to other things before this diagnosis. But symptoms would come and go until I got real sick 3 1/2 years ago.
hopeful123
Posted by riversinger (Member # 4851) on :
15
Posted by jmardis (Member # 6643) on :
1 duck (blew off flu like symptoms with rash 10 days following tick bite 2 1/2 yrs ago) Came out of remission in Oct 2004 1 nurse practitioner 1 ob/gyn 1 ER doctor (suggested lyme and tested) 1 LLMD (diagnosed in Jan 2005)
Posted by lymeinhell (Member # 4622) on :
14
Posted by marblenose (Member # 6477) on :
11 in 10 years! Blessings, Marblenose
Posted by Tincup (Member # 5829) on :
You guys... thanks.
I am trying to get at least 100 response.
Please respond if you haven't.
I DO appreciate it!!!
Posted by WIZARD (Member # 4597) on :
Lucky to have seen tick and removed it - but after PCP refused treatment only had to see ONE Dr. in ER for Dx.
Posted by Kari (Member # 4154) on :
Surprisingly only one to get the diagnosis.
The problem for me was getting appropriate treatment...I went through at least 15 doctors after the diagnosis before being given adequate treatment. The original doctor would only give 3 weeks of doxy at 100mg and none of the following 15 MDs, Neurologist, Infectious Disease Specialist, etc would give me any further abx treatment.
Thank god for the couple of LLMDs I eventually found!
Posted by liz28 on :
I saw nine doctors before getting the bare beginnings of Lyme treatment.
Neither LLMD that I have seen has made a proper diagnosis. After almost five years, I'm finally being treated for bartonella and babesia, because I asked for the treatment.
Posted by lisag (Member # 6798) on :
About 15-20 over the past year. This includes all the d_cks (fill in with your favorite vowel) during several hospital stays....no diagnosis from any of these yohos!!!!
Finally in last month 2 llmd's confirmed lyme.
Posted by MADDOG (Member # 18) on :
Hi,At least 20 ducks and one doctor. The reumitologist was the most retarted quack of all. I would crock him upside the head if i had him give me the same bull crap today. MADDOG
Posted by hwlatin (Member # 4123) on :
I went to 38 doctors believe it or not, and that was just for me.
Posted by teri64 (Member # 6971) on :
5 until I found Lymenet and then my LLMD last spring.
I usually just lurk around here but I must say how thankful I am to all of you. I can't imagine what kind of shape I would be in now if Lymenet wasn't around to provide the information needed to get a correct diagnosis.
Posted by Trillian (Member # 6857) on :
I can think of 18 from the past two years.
Posted by Sue vG (Member # 3143) on :
10.
In all fairness, doc #3, an allergist/immunologist, had the presence of mind to run a lyme test (WB). It came back negative, but I was no more than 4-6 weeks into my illness and may not have been producing enough antibodies yet.
It was 15 months from onset of symptoms to diagnosis.
Posted by robi (Member # 5547) on :
4 Total GP #1, Surgeon who removed 2 lymphnodes GP #2 who insisted I did not have lyme (my ELISA was negative....LOL) Then, my Incredible LLMD who Dx'd me......... and tarted treatment.....I am now improving.
But, I did A LOT of research on my own behalf and found lymenet quickly.
If I hd not been aggressive I am sure I would have a MS DX by now and perhaps be on steroids and getting sicker.
robi
Posted by Wink9 (Member # 4516) on :
10.
Posted by Beverly (Member # 1271) on :
11
Posted by Kira (Member # 2676) on :
12
Posted by LymeinME (Member # 6849) on :
5
Posted by snowboarder (Member # 6346) on :
20 at least.
Posted by Kaykay (Member # 6732) on :
5-had it so long, thought it was normal to feel this bad
Posted by lifeline (Member # 3445) on :
5
Posted by newlymepatient (Member # 6461) on :
5 I think and then I figured it out and saw an LLMD.
Posted by tequeslady (Member # 6832) on :
13
Posted by josiestrann (Member # 5319) on :
7 doctors
Posted by sunshine24 (Member # 6867) on :
1 homeopathic, 2 gastro, 6 gyno, 7 family practice, 1 infectious med and emergency room and urgent care almost every night.... It hurts because so many docs think your crazy and refuse to see you anymore but go to a lyme specialist and you have a good friend to help you.
Good luck
Posted by DJP (Member # 5893) on :
2 for my daughter because I found this site early in the process.
Same for me (2).
Posted by ready to go (Member # 3958) on :
6, hopefully no more!
Posted by nan (Member # 63) on :
9
Posted by jewood69 (Member # 5945) on :
10 (including my LLMD who made the diagnosis)
Posted by brentb (Member # 6899) on :
over 20
Posted by lymemomtooo (Member # 5396) on :
up
Posted by paulscha (Member # 6334) on :
16
Posted by needleseye (Member # 6037) on :
3 including one Nurse practioner
Posted by MonaR (Member # 6972) on :
probably 20+ over a 3 year period prior to dx
Posted by tickitout (Member # 6982) on :
20 +
Posted by mimi (Member # 6680) on :
At least 6 Family Practice
2 Internist
1 Alternative MD
1 Endocrinologist that I had seen for many years and explained all my new symptoms could not be my thyroid. He suggested I should try to lighten up
1 OBGYN
Posted by Rene (Member # 4870) on :
3
Posted by Lymeblue (Member # 6897) on :
5!!!
Posted by lymeam2pm (Member # 6103) on :
I got lucky, only 3. But none of them helped me. I ran into someone whose daughter has it and see gave me a Doctor's name and info about getting Igenex test done. Peggy
Posted by HECE99 (Member # 6749) on :
11 doctors 5 hospitals
Posted by Walnut (Member # 6585) on :
1
Posted by lymesux (Member # 6248) on :
myself - atleast 40 kids - atleast 10 (each)
Posted by KLS (Member # 6002) on :
1 Family practitioner (countless times!!!) 1 Ear, Nose & Throat Doc 1 Oral Surgeon (for jaw pain-which I'm sure is lyme related, but told I had TMJ) 1 LLMD 1 Gastroenterologist 1 Infectious Disease Doctor(who had me believing I was crazy for even thinking I had lyme even though I had a + IGG and IGM from Igenex!) Currently, I'm scheduled to see... 1 Rheumatologist 1 Neurologist And hopefully I'll find some answers there and get the help that I really need!
For a grand total of 8 doctors in 1 year!!! That's more than I've seen in my entire life!!!
Posted by lymemomtooo (Member # 5396) on :
Ok, she's getting there but still needs some more..The ups do not count..Thanks all.
Posted by cindy_leigh (Member # 3514) on :
6
Posted by lightfoot (Member # 2536) on :
19 to 20 ..... maybe more
miss lightfoot 7 to 10
------------------ C O L O R A D O * S U P P O R T * S Y S T E M [email protected]
"A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words". Unknown
Posted by LymeLaura (Member # 6624) on :
For my daughter: 47
For me: only 2 BUT, I knew I had lyme and went straight to my daughter's llmd after my internist said I didn't have lyme (ELISA).
Posted by Aligondo Bruce (Member # 6219) on :
hmmm...I honestly can't remember. Definitely more than 30 doctors of various specialties. Also, a number of psychologists and psychiatrists. The mental hospital is a haze because of all the haldol they had me on, not to mention pills that I don't know what they were. I know there were several psychiatrists in there...also, I don't know if this counts, but there are several doctors in my family, also a radiologist neighbor down the street I had an emergrency consult with while running from the police who were trying to put me in a mental hospital. Thanks for everything, allen steere.
Posted by proud pup (Member # 4152) on :
3 different primaries 3 different Neuros 2 different sleep doctors 3 different infect. diease doctors 1 rhueomologist (sp?)
So, 12
Posted by bg (Member # 46416) on :
up for your last minute folks
Betty G.
Posted by pq (Member # 6886) on :
2 or 3
Posted by sarahjane (Member # 6517) on :
1 duck then straight to a LLMD thanks to Lymenet
Posted by rcmdesigns (Member # 5922) on :
12
Posted by Mowanda on :
technically 4 though two work in the same clinic so it was a follow up with the available doc.
Posted by Linda LD (Member # 6663) on :
Tincup,
i think have had since i was six or seven. Am 41 now...
But i never went to the doctor--so I'll say, 8?
L
Posted by laserred (Member # 6796) on :
Probably 15, from the first (now recognized) symtoms since '96.
-laserred-
Posted by Lymied (Member # 6704) on :
20 +
Posted by Areneli (Member # 6740) on :
4
Posted by Tincup (Member # 5829) on :
STOP HERE!
Thanks!
Am working on poll results.. will post later.
Posted by groovy2 (Member # 6304) on :
about a dozen ---Was told son your fine-- I figured out my self after watching a tv show on it - Much research- and finding this great group -- jay
Posted by Mowanda on :
Need to edit my response, i said a possiblity of 4,2 being from the same clinic and just a follow up from one appt
In honesty I'm not sure, there is the possibilty I've had this for 9 years, would explain somethings. If that's the case how many docs I have seen over the years in complaint of symptoms I don't know. Guessing over 10 maybe 15
Posted by morningnewsman (Member # 5987) on :
I saw 10 doctors before my diagnosis by a LLMD. Two of the docs counted out Lyme early on, and then nine months later a chiropractor said "this sounds like Lyme, you should go see Dr. H". Also, I received terrific results during those nine months from a chiropractor in NJ...it truly relieved many of my symptoms to a degree...he's in northern NJ if anyone needs the info.
------------------ Thanks, Rick
Posted by TinaAStPierre (Member # 7120) on :
6
Posted by Michelle M (Member # 7200) on :
Three.
Michelle M.
Posted by I Have Lyme Etc (Member # 7439) on :
7
quote:Originally posted by Tincup: Just a total number.. not the kind of duck.
oops! 
