I am working on a project and would like your input. Here is the question I need answered so I can target the right topics.
What are the diseases and conditions you were misdiagnosed with prior to learning you had Lyme?
If you would please just list them without added information... it would help my tiny brain be able to focus better and count.
Thanks for responding. It will really really help.
[ 22. June 2008, 02:27 PM: Message edited by: Tincup ]
Posted by tdtid (Member # 10276) on :
anxiety, "possible" m.s., lupus, pheochromocytoma's, fibromyalgia, myofascial pain syndrome, migraines, (tested positive for Rheumotoid arthritis, but rheumy said it didn't fit),
I'm sure there will be more that come to mind, but that's all my brain can remember at this particular moment. Good luck in the search.
Cathy
Posted by Allie (Member # 10778) on :
Mine were anxiety and allergies.
Posted by Tincup (Member # 5829) on :
I almost said GREAT as a response to you!
That is a good answer is what I mean... but BAD for you having to go through all that! Bad ducks!!!
So sorry!
But your answer DOES help... so I thank you!
Posted by sixgoofykids (Member # 11141) on :
ER doctor - partying too much (college age)
ER doctor - dehydration
Ob/gyn - ongoing symptoms from flu six months earlier
regular doc - migrating joint pain after a bout of bronchitis is normal but rare
regular doc - Somatization Disorder
Posted by painted turtle (Member # 7801) on :
Strange Eye Problem - 1970's (as a child) (requiring patch)
No "diagnosis" for excelling in Spaciness. - 1970's
Anemia - 1980's
Allergies - 1980's
Migraines - 1990's
IBS - 1990's
Costochondritis - 1990's
Neuroborrelia - 2005
Babesia - 2006
PTSD
and all that. Posted by Larkspur (Member # 5131) on :
Ok - I'll go
When the neurolyme hit in summer 2003:
West Nile, viral meningitis
Brain tumor, lupus, post tramatic stress syndrome from a minor car accident (all brought up in one sentence by 1st doc I saw)
Then I found my LLMD
Once I had the Lyme diagnosis, my private disability insurance from my previous job
sent me to a bunch of their own docs to discredit my claim!
From the insurance chosen docs I was told I didn't have lyme, but perhaps AIDS (from a Infectious disease doc)
from the neuropsychologist they sent me to: cognitive prob were related to a general low IQ and of course, no lyme disease. She also wrote in her report my hair was "unkempt"!
Hmppph!
Posted by charlie (Member # 25) on :
Gout, Bursitis....
Posted by Alv (Member # 15192) on :
anxiety( 2006) , lupus(2007), Might be leuckemia(2007)( Low WBC 1.5 for 3 years) , Migranes(1993)( were the first ones, rhematologist said I do not have Arthritis 2005 ( test came negative) Send for Laparoscopy 2004 , Endoscopy 2005( pains moved around digestive track for a while), Colonoscopy 2006 , GERD, E coli, Hep B( they said was not active though)Physical therapy( HIPS off 2007), Adjustments recomended( was lyme in the joint).
They claimed the computer had caused neck pain and tightness....CALLED STRESFULL LIFESTYLE( Yes right having lyme sure everything you have to accopmlish request 500% of you and make you stresful).
FATIGUE 2003( depression -blah , blah blah due to the lost of my mother).
Always they try to find STRESSOR in life and blame it for every flare symtoms that lyme brings up.( so they want to handle Antidepresant as CANDIES 1995 and again 2003 and 2006).
DEHYDRATION -2006, vomiting , ER -3 times 2007, pale , shaking seisures( they included toxic-bacterial load).Never told me anything.Send me home.
One dr test for lyme -never mentioned LYME at all ( just covered HIS A** and did an ELISA) while my symtoms were PURE LYME.
MERCURY posioning while all organs were shut down -Said too late to do anything -permanent damage-nothing I could do on MARCh OF 2007.Fired them All
FULL Blown active nauro borreliosis -late stage with 7 coinfections ( have been bitten 4 times that I can recall -none had a clue from european Drs and USA doctor-complitly ignorant about LYME) Self diagnosed 2007-POSITIVE CDC western Bloot with many bands with 30+++as neuroborreliosis VERY late stage, babesia, bart , mucoplasma fermentas,ehrlichia , viruses.
Forgot No body could exsplain the headaches on 3rd grade , GOUT 1985 , knee arthritis 1990 , water in the knee - Migrane in 1993 pain and limping on 1996 no need of surgery in 1996-water in the right knee .Severe Neck pain in 1997 -and shoulder -bursitis....BOY I can recall more ...
[ 17. June 2008, 05:35 PM: Message edited by: Alv ]
Posted by Tincup (Member # 5829) on :
Oh GEEZE! This is incredible! Sad too!
But this is exactly what I need.
I hope to use some of this in an article.... no names will be used... so if I don't have your permission.. please advise.
I should have said that sooner... sorry! But I didn't know I would get so many responses like this.. so was not sure exactly how I would use the information.
Keep it coming!
Thanks!
Posted by Blymey (Member # 15215) on :
Depression Anxiety Osteoarthritis CFS possible fibromyalgia PMDD - Pre Menstral Dysphoric Disorder Poly - Cystic Ovarian Syndrome Flu Hypochondria
Basically started Zoloft due to anxiety over health issues - doctor felt that other than minor osteoarthritis there was nothing wrong with me.
Posted by Blymey (Member # 15215) on :
Oh! I forgot viral meningitis (in 1987) - LLMD believes that this was caused by Borrelia
and of course STRESS - It's always that, isn't it?
Posted by feelfit (Member # 12770) on :
Osteoarthritis Possible MS Possible Brain Tumor Lupus Possible psoriasis Bakers Cysts Anxiety disorder panic disorder depression ocd borderline personality bi-polar II migraine everything under the sun for 20 years except TBI's
Posted by feelfit (Member # 12770) on :
OOPS forgot
Stress
told that stress could give me everything but a baby!
Posted by cactus (Member # 7347) on :
There are more, can't think of them all. You're welcome to use them.
My older son made a video game out of it called "Pin the Diagnosis on Mom" - doctors throwing different diagnoses. Good game. Bad ducks.
Posted by jkmom (Member # 14004) on :
For my daughter:
migraines anxiety depression mood disorder-nos intermittent explosive disorder psychosomatic
Posted by webmeg (Member # 13647) on :
anxiety suggested fibromyalgia, chronic fatigue
Posted by mtree (Member # 14305) on :
...at 26 years old.. all in my head....and depression...
Posted by cantgiveupyet (Member # 8165) on :
First ER dr thought someone slipped me a sudafed(i was on vacation with my mother!)
Ocular migraines Herniated disc in neck Hyper ventalation Thyroid gone wacky photophobia dizziness Gerd Anxiety Depression Endocrine disorder(endo laughed) Stress induced illness- mind making me sick Lymphoma- it has to be hididng out somewhere we just have to find it. HIV- test negative but one LLMD felt this is what i had :-( i was so sick i didnt even care.
[ 17. June 2008, 11:24 PM: Message edited by: cantgiveupyet ]
Posted by adamm (Member # 11910) on :
Nothing...it was all in my head.
Posted by Dawnee (Member # 15089) on :
Recurring Ear and Throat infections from childhood into adulthood
Growing Pangs
Bursitis for shoulder
Carpel Tunel
TMJ
Anemia 1993, 2000 & 2003
Scarlet Fever 2003 right after tick bite (re-infection)
Endometriosis 2003 (was told today by my Gyn that Lyme probably caused it!!! (she did a paper on LD in college she said...) Had to have total hysterectomy in 2007 at the age of 29 and put on HRT
Severe low iron of unknown cause 2003
IBS 2003
Anxiety disorder 2003 and 2008
Sustained Tachycardia 2004
In need of a psychiatrist by two seperate Neurologists 2008
2008 one neuro suspected MS and had tests run (MRIs) and when those came back clear then I was just told I had anxiety and needed a psychiatrist (even though my muscles were twitching non-stop)
I'm sure I would have had more profound diagnosis if Id gone to the doctor and complained...but I hate doctors! lol
[ 19. June 2008, 01:57 PM: Message edited by: Dawnee ]
Posted by Lymetoo (Member # 743) on :
Dawnee.. YES, the Lyme caused the female problems!!
Posted by ICEiam (Member # 7519) on :
For 27 year old Daughter from onset to now.
DUCKS 12 years old- Headaches due to stress OCD Anxiety disorder Depression Fevers from unknown origin Knee pain due to Figure skating Hip Pain due to Figure skating ankle pain due to figure skating contant leg pain due to figure skating It was easy for the DUCKS to blame skating for aches and pains. constant sore throat,(never had strep) Mouth sores all the time so bad she could barely talk. Doctor never could figure out why. Fibromyalgia at 14 Chronic fatigue bone cancer Borderline personality disorder Lupus MS All in her head to get attention anorexia bulemia
LLMD
HLA DR4 Lyme Babs bart Erlic Myco HHV 6 CMV EBV
I am sure there are more it has been 16 years.......
Posted by tailz (Member # 10014) on :
COPD aortic sclerosis adrenal hyperplasia anorexia nervosa was implied malnutrition psychosomatic tendencies drug dependence (since my symptoms worsened whenever I'd try to stop the Klonopin) ...and my favorite, menopause.
If these symptoms were primary menopause, all women over the age of 52 would be institutionalized.
Posted by bettyg (Member # 6147) on :
DUCKS
chronic fatigue syndrome;
excessive sensitivities to *****************************
LIGHTS, GLARE & REFLECTION...like looking directly at sun!;
noise/sounds ... all amplified!
chemical smells: perfume, cologne, hair spray, after shave, diesel fumes, cigarettes and especially on their CLOTHES!;
painful periods; hiatal hernia; irritable bowel/bladder syndrome; Headaches due to stress; Anxiety disorder; Depression; Fevers from unknown origin Knee pain Hip Pain contant groin/thigh leg pain TMJ constant sore throat deep coughing like bronchitus like sound! sinuses being plugged full-time
Fibromyalgia Lupus 3 times! All in her head to get attention
paralyzed vocal cord;
heart stress test showed blockage of 1 valve; had ballon test done...BALLOON NOT NEEDED!
LLMD dx *******
HLA DR4 Lyme HHV 6 EBV simplex herpes virus
allergic to gluten and casein foods
I'VE HAD CHRONIC LYME 38.5 YEARS; I'LL EDIT LATER WITH MORE!!
Posted by soonermom (Member # 14494) on :
Hemiplegic Migraine possible MS susac's syndrome
Posted by Melanie Reber (Member # 3707) on :
Migraine with Aura
MS
Anxiety disorder
Sleep disorder
Low-blood pressure
Depression
TMJ
'Runner's knee'
Plantar Fascitis
Asthma
'Ringworm'
Cervical Pre-cancer
Arrhythmia
All that prior to the correct diagnoses
Posted by joalo (Member # 12752) on :
CFS and fibromyalgia
Posted by hokie (Member # 14720) on :
"myofascial pain syndrome," "pudendal neuropathy," "fibromyalgia-like syndrome," mono, "muscle imbalance causing nerve like pain"
Posted by disturbedme (Member # 12346) on :
-migraines/headaches (had them every single day. This was during high school.)
-IBS (during high school and college)
-virus (of some sort. The doctor didn't know WHAT kind, but said it was some sort of virus and would just have to wait it out and drink a lot of gatorade.)
-tachycardia (now realize it's due to lyme disease).
-vitamin deficiency
-depression/anxiety
-"it's your spirit" (I guess what they really meant by this was depression/anxiety as well.)
-sinus infection (diagnosis from duck at ER. Gave me antibiotics for it that made me herx, which landed me in the ER again, feeling worse).
Posted by moosejive (Member # 14545) on :
1. Major Depression
2. Something requiring antipsychotics (they didn't seem to have a name for it, but boy did I need Seroquel for it.)
3. Malingering
Posted by cameronb (Member # 12240) on :
for my mother:
meniere's disease
Macular Degeneration
glaucoma
Generalized Anxiety Disorder
epilepsy
Pseudo Mal De Debarquement Syndrome ("pseudo" because she'd never been on a BOAT. This was a particularly hard misdiagnosis to swallow because we had waited 2 months for an appointment with this hot-shot world-renowned vertigo specialist.)
Posted by mazou (Member # 15319) on :
Working backwards, regarding my derealization for 15+ yrs:
Chronic Fatigue "I think it's food" "Have you tried hypnosis" ADD depression/anxiety
Posted by TS96 (Member # 14048) on :
Cat Scratch Fever 5yo no abx.
ADD Environmental conjunctivitis Multiple chemical sensitivities TMJ
Fibromyalgia Chronic Fatigue IBS and multiple GI problems Insomnia RLS Anxiety Anemia Spondylitis of neck and back Depression, including Post Pardum Depression enlarged spleen Chronic Sinusitis gallbladder removed (stones)
Adrenal Fatigue T3 T4 conversion problems heavy metal toxicity Candida
[ 18. June 2008, 01:29 PM: Message edited by: TS96 ]
Posted by Tincup (Member # 5829) on :
HOLY COW!
If this wasn't for real I would laugh looking at this list from you all!
But imagine the awful way we've been treated.
My article is only XX number of words.. and just using the symptoms you've listed I am already up there!
But keep them coming cause I am also trying to find the most common ones, etc.
THANK YOU!!!!!
Posted by wantabe (Member # 14703) on :
-mumps -anemia -unknown reason for bleeding- uterus ablation performed -possible lupus -possible depression -Raynauds -dairy allergy -unknown reasons for fever -migraines -possible chronic viral meningitis -possibly allergic to husband's sperm -stress problems -chronic fatigue syndrome -gluten sensitivity
Posted by Lily (Member # 13158) on :
possible virus possible Lupus (sero-negative) possible lymphoma Still's Disease Rheumatic fever
Posted by seibertneurolyme (Member # 6416) on :
For hubby
chronic gastritis (5 times I think in 7 years -- most likely from Bart) tremors from anxiety/depression pseudoseizures Parkinson's (by a psychiatrist) somatization disorder post-Lyme autoimmune disorder
Bea Seibert
Posted by Bobidor (Member # 14453) on :
Somatization disorder Anxiety disorder Hypochondria Familial Hemiplegic Migraine Possible atypical MS Burnout Arrhythmia Costochondritis GERD IBS Sinusitis, bronchitis, conjunctivitis B12 deficiency (even though my labs said otherwise) Channeling powers (from a ``top'' neuro!)
Posted by fatigued15 (Member # 6437) on :
19 year old daughter patellofemoral syndrome 2002 mononucleosis 2003 possible depression 2003 chronic fatigue syndrome 2003 Lyme disease 2004
28 year old son colitis migraines through high school learning disabilities worse in high school 2005 started with hallucinations, fortunately I knew this could be Lyme disease due to my daughter diagnosed with Lyme in 2005
me 52 years old getting older 2004 everyone gets tired 2005 fibromylagia 2006 started Lyme treatment 2008
Posted by Geneal (Member # 10375) on :
Post traumatic Stress Disorder.
Fibromyalgia.
Hugs,
Geneal
Posted by NanaDubo (Member # 14794) on :
anxiety disorder
depression
TMJ
hiatal hernia
rheumatoid arthritis
maybe Sjorgens (sp?)
"some autoimmune thing"
adrenal fatigue
CNS problem "due to trauma going back to the crib" right!
hypochondria
panic disorder
"unexplained nerve pain" - ER
"I don't know"
"I give up"
"Go home and take some Tylenol"
Posted by AZURE WISH (Member # 804) on :
Mostly these "diagnosis" were 10-12 from then till 23 (when i was diagnosed) pretty much nothing added
except some "i dont knows.. or well maybe there is a tear we cant see" those kinda things
- Faking
- Growing pains
- Stress
- Probaly viral (so it will pass)
- It was all my fault I was sick
(nice thing for a dr to tell a 12 year old )
Posted by Wimenin (Member # 15294) on :
So far... misdiagnosed as...
-flu -anxiety -depression -meningitis -encephalitis -migraine -cracked spine (leaking csf) -restless legs syndrome -mid life crisis/andropause -hypochondria..(except the elevated wbc, elevated csf protein level, low grade fevers...couldn't be explained)
but tested for...(at least 2-3x because of switching hmos..) -mono -thyroid -lyme (failed elisa-ab twice) -brain tumor -pneumonia -lupus -fibromyalgia -cancer -protatitis -urinary infection -ulcer -heart condition -MS -spinal injury -gerd/ibs ...and all were negative...
...no wonder I hate going to the drs...
Posted by Peacesoul (Member # 13709) on :
(my tests showed anemia, postitive ANA (had + ANA for over 14 yrs), blood in my urine with no known causes, thyroid profile 3.5)
Posted by dmc (Member # 5102) on :
migraines Multiple Sclerosis
Posted by Peacesoul (Member # 13709) on :
I see a theme here of many suffereing from anxiety and panic disorder.
I always wonder if anxiety/panic is a caused from the illness or was there before and made us more suseptible to an illness.
Posted by DakotasMom01 (Member # 14141) on :
Depression for 25 yrs. Carple Tunnel both wrists~Surgery right only Tennis Elbow/Tendonitis Anxiety/ Panic disorder Osteoarthritis, Spine & Knee Possible MS Fibromyalgia Migraines with auras "Just a cyst", Many times "Just a rash" Many times "Just swollen glands" a few times Spinal Stenosis Ankylosing Spondylitis Sacroliliac Dysfunction,{Hip area} Facet Joint Dysfunction {Lumbar Spine} Degen Disk Disease Restless Legs Sciatica Herniated Disks Sjogrens Symdrome Raynauds Syndrome Sarciodosis {sp?}~Had biopsy Chronic Sinusitis Chronic Broncitis Tooth grinding Chemical sensitivities Allergies Ibs Low thyroid~~But not low enough to treat! Vision ~~said it was hormonal due to age {40 at the time) Chronic fatigue
Horrible PMS & Female problems , pelvic pain for 10 yrs{First bite, 20 yrs ago in the thigh!!} Normal Ultrasound.
Gall Bladder Pain-Normal Ultrasound
Long lasting sore throat & Hoarseness that turned out to be a large Vocal Cord Polyp.
Lupus & RA ~~Were ruled out
{Edited to add}
its all in my head syndrome
1st tick bite late 1980's, was NOT a bullseye. It was a huge purple bruise like mark.
Duck said it was a bruise. Derma duck said it was a fungus, and treated with steriods.
2nd Tick bite 2006, marked the same, but was raised & swollen with a faint outside ring...
Duck said it was "just a possible BUG bite". Rheummy said Tick bite, let's test for Lyme.
{ from Deer & Bear country, Sussex Co NJ}
Hope this helps
[ 20. June 2008, 05:43 AM: Message edited by: DakotasMom01 ]
Posted by Wimenin (Member # 15294) on :
"I see a theme here of many suffereing from anxiety and panic disorder. I always wonder if anxiety/panic is a caused from the illness or was there before and made us more suseptible to an illness."
I can't vouche for anyone else, but I can say this... before I came down with this crap, I never had panic attacks, depressed thoughts, crying spells, mood swings, or any of the other hundred odd symptoms that have come, gone, rotated, changed, sometimes hourly over the past 18 mos.... Symptoms that are so real and specific at times that you would swear you have a particular affliction, even the drs think so, only to have the tests come back negative.
I cant speak for anyone else, but I know the exact day it all started, and Ive been tracking it ever since.. every 28-30 days, just like clockwork... almost too predictable.. I dont think anxiety is that predictable, is it?
Posted by lou4656 (Member # 10300) on :
I was cut loose by my LLMD today. Symptom free since December. So, now you know . . . long-term antibiotics can relieve all of the above listed ailments.
Shesh!!!
Posted by AZURE WISH (Member # 804) on :
YAY!!
congrats on being symptom free Lou Posted by bettyg (Member # 6147) on :
lou, CONGRATS; SO HAPPY TO READ THIS!!!! Posted by seibertneurolyme (Member # 6416) on :
Need to add
conversion disorder
Bea Seibert
Posted by dontlikeliver (Member # 4749) on :
CFS and Fibro, of course Then possible MS. DLL
Posted by UnexpectedIlls (Member # 15144) on :
Virus Post partum depression stress hormones Inflammatory illness of unknown cause Lupus- ANA positive MS-possible Sarcoidosis-possible due to elevated ace Hypercondria Generalized anxiety disorder Sinus Tacycardia (which I still have) Post traumatic stress disorder (yep you better believe it)
ER docs- PPD, Sinus infection, vertigo, anxiety, anxiety, its all in my head, I am scared because I jsut had a new baby and need to see someone for help, Theres nothing wring with you, bladder infection
It goes on and on.....
Posted by herxuk (Member # 15873) on :
Ist GP fibromyalgia. 2nd GP Polymyalagia Rheumatica Ist GP
NO he`s wrong you have fibromyalgia. 3rd GP you are low in
vit D. It was normal. Ist GP will send you to Rheumo your Plas
ma Viscositi is very high. ( inflammation ) Rheumo `your GP
thinks you have Polymyalgia Rheumatica. So the VAMPIRE took
lots of blood.Negative. Ist GP you have fibromyalgia and ANXIETY
WELL OF COURSE !!!!!! QUACKS !!!!
Posted by IMHisda (Member # 6998) on :
Chronic fatigue/Fibromyalgia Syndrom Carpel Tunnel Syndrome
Posted by Tracy9 (Member # 7521) on :
Somatization Disorder
Arthritis
Allergic reaction (EM)
Chronic Fatigue Syndrome
Fibromyalgia
Post Lyme Syndrome
Posted by flintykindofwoman (Member # 13615) on :
DEPRESSION!!
RESTLESS LEG SYNDROME!!!
NNB (NEED A NEW BOYFRIEND)!!!
Posted by Keebler (Member # 12673) on :
-
'60 Scarlet Fever (approx. age 7 in S. Ill.); heart murmur;
'71 Mono (college in Wisconsin);
'72 Tonsils out at age 19; constant ear & respiratory infections; vertigo; severe startles;
'76 Valley Fever (B'fd, Ca.; no treatment); ulcer (treated by doctor with only half & half);
'77 severe fatigue and vertigo (Boston, while in grad school);
'82 FM dx (in S. Illinois. Absolutely no information or advice);
'84 connective tissue disease; severe light sensitivity & fatigue (working in Wisconsin), "probable" LUPUS with high ANA; (Doctor said there was nothing I could do for the lupus.)
'87 walking pneumonia (while vacationing on the east coast); constant sinus, ear, throat, lung infections;
[ '89 - moved to Oregon and have lived there since ]
'90 CFS. High and speckled ANA several times around then. Immune panel with many abnormal markers.
'94 severe anemia; fainting.
'94 misdiagnosed - bipolar, depression.
'95 vestibular dx, hyperacusis & severe sensory dysfunction; endolymphatic hydrops
'95 chronic porphyria (proto & variegate) by Mayo tests;
'96 seizure disorder (triggered by severe startle from sounds, deep or pulsing vibrations, flashes, motion); EEG's normal; 3 QEEG's all abnormal (but QEEGs are not considered by MD's). Oto-neurologist determined the inner ear to be triggering seizures but also told me to get tested for lyme.
'96 Negative ELISA for Bb (lyme).
'97 Igenex positive Western Blot for Borrelia b. ; Babesia and HME (human monocytic ehrlichiosis );
[Testing was ordered through Igenex lab by N.D. (as no M.D. would do the advance testing). Treatment withheld, as no M.D. in my state would acknowledge tests or treat. I did the best I could afford with alternative treatment. After 3 years, I got 2 months' doxycycline.]
'07 Coxsackie virus, positive for a few strains; past exposure.
'08 Cpn with very high IgG and IgA, indicating persisent chronic Chlamydia Pneumonia (by a few researchers, though not by the medical profession in general).
'08 HHV-6 - positive, past exposure.
(Note: many tick attachments since childhood; some discovered days after being in the woods. I've lived in many states.)
-
[ 20. June 2008, 01:08 PM: Message edited by: Keebler ]
Posted by Tincup (Member # 5829) on :
WOW! This list is getting soooooooooo long!
But it is exactly what the people need to see to oen some eyes.
You all are getting ahead of me... but keep it up!
I will catch up soon!
And how sad it is to know this is still happening.
And Lou... good for you!!!!
Posted by Tincup (Member # 5829) on :
It looks like we have about 49 patients who have responded.
I would LOVE to have 100 if possible!
That way I can do the math easier and have a better sampling. So far we have USA, Canada and Europe represented too... which is great!
Can we get 50 more... real soon? On a deadline and it will take a while to sort through all this information.
Thanks so much!!!
Posted by Blackstone (Member # 9453) on :
Mononucleosis - (True, I actually HAD a positive monospot. I probably did have mono, but it was the catalyst I never got better from)
Chronic Fatigue Syndrome - When I never got better from the mono, they called it CFS
Fibromyalgia - I had pain as well as fatigue, so that = fibromyalgia.
Posted by 1rosepedal (Member # 15653) on :
I haven't been on here since I saw the ID Duck last week . . .
I took her my test results which read positive for 3 bands of Lyme . . .
She said "I can't say you do or don't have Lyme . . I just think you're depressed!" She ordered a re-test and said come back in 3 weeks.
Until a few months ago, I was Miss "Happy Go Lucky" . .
Just moved into a lovely new house on an acre, backed up to woods. I wake up in the morning to several deer in the back yard.
Funny thing here is the neighbor's dog tested positive and is being treated for Lyme.
I don't understand. I've never been depressed.
Posted by ticked-offinNc (Member # 15420) on :
all in my head
Fibro tendonitis pre-cancer cervical alzheimers ms migranes pms just menopause
Posted by Dancer (Member # 11039) on :
Non-specific inflammatory arthritis Candidiasis Generalized anxiety disorder Depression Chronic fatigue syndrome
Posted by Tincup (Member # 5829) on :
Great... we are on a roll!
And if your state isn't listed... would you be so kind as to post it or email me your screen name and the state?
I would like to get a count of where these are coming from... a general area and idea.
I already posted on this thread earlier, but I only did dx from 2003 when full neuro lyme hit.
I was intitially exposed to TBI in approx 1974-ish and prob had several bites since then prior to the "crash" of 2003
Here are more dx from childhood - through early my early 30's
Depression childhood insomnia Anxiety "Shyness" Raynaud's Syndrome Ovarian cyst (surgery at age 20) eczma, odd rashes etc food allergies heart murmur constant sinus infections migraines folliculitis "at risk" for Lupus (whatever that means) fibroadenoma
Posted by bettyg (Member # 6147) on :
hi tincup,
a suggestion since you posted a separate thread to those answering who did NOT show the state they live in.
could you edit your 1st post and ask them to show their STATE in their reply or to send to you by email, and show your home address??
click pencil to open up text part to add STATE needed comment....
thx, i just sent your request to my LYME LIST GROUP including you, and asked them to come here.
most do NOT post here, so by having your request in the top post; they will know that is needed too!!
Posted by kgaTX (Member # 15314) on :
CHILDHOOD:
-chronic sore throats (said they were just viruses)
-Cellulitis (several times legs became swollen with rashes from "bug bites")
-pleurisy (hospitalized several times)
-MONO suggested a hundred times ( had it once and then they never knew if it was showing up as past or active infection so they would just give up at that point)
-depression
-TMJ (went away after LT abx)
IN COLLEGE:
- more & more "pleurisy" incidents
- more "mono"
- viral thyroiditis
- endometriosis ( I actually did have a mild case, but I spent 3 years just focusing on the endo b/c they told me that it what was causing everything)
- making it up or depression
- IBS (even though I did not have any symptoms, they put me on meds "just in case")
- normal college stressful lifestyle (except I wasn't able to have a "normal" college life)
-I was told I was pregnant or was having an ectopic pregnancy countless times (especially funny as pregnancy was not possible as I was not having sex)
-drink fluids and get some rest, it's just a "virus"
- breast cancer (ended up being MRSA in one breast)
I grew up in Texas and grew up picking ticks off of my self. I estimate I have had well over a thousand tick attachments over the years, and yet I was NEVER tested for any tick borne illness.
I had to go out of state before Lyme was even suggested as a possibility. We were never taught the dangers of tick bites, as it is thought that there is zero risk in Texas.
It is heartbreaking to read the battles everyone has had to go through to get a diagnosis and I hope and pray that it will not always have to be this big of a fight to get proper treatment!
Posted by LaurenTurner (Member # 12320) on :
Most doctors I saw didn't dx me with anything. They simply said everything looked fine.
The last doctor I went to, before finding an llmd, said I had heartburn. All of my symptoms were because of heartburn.
I gave him the benefit of the doubt (because I was desperate) and took acid reflux meds. It didn't do a thing..
Posted by Vermont_Lymie (Member # 9780) on :
Asthma Depression Fibromyalgia And according to my family, just lazy!
Posted by kgaTX (Member # 15314) on :
sorry, I forgot a few! It's hard to remember a decade of bad dr's visits....I guess I try to block some of them out!
-chronic conjuntivitis (would always come back even after eye drops)
-you just have the flu
-walking pneumonia
-vertigo ( trying to explain dizzy spells and partial blackouts)
- hormonal problems (although they offered no solution) were trying to explain years of low body temp followed by years of constant, unexplained fever
- and my personal favorite....one doc told me I was just constipated and to eat more fiber! Like that would explain all my symptoms!
Posted by mikej2323 (Member # 8913) on :
1st symptoms in 3/2005= left elbow pain and shoulder weakness.
Possibilities/Diagnoses:
Tumor Guillain-Barre' Syndrome Multifocal Motor Neuropathy Mycotoxicosis/Trichothecenes Chronic Inflammatory Demyelinating Polyneuropathy West Nile Virus {false-positive} Hemiparesis secondary to mycoplasma {but did not give antibioitcs, just IVIg's} Myasthenia Gravis Motor Neuron Syndrome 1 Pediatric neurologist...???? Couldn't tell us... Chiari malformation Syringomyelia
-Twice clinically diagnosed with neuroborreliosis. Ttested positive for mycoplasma pneumoniae 3 times in blood and CSF -IgG positive= HHV-6 -Bowen QRIBb tested highest + at 1:126 -Fry positive -Heavy metals in urine: aluminum, cadmium, mercury and tungsten
Hope that helps!
Posted by lou4656 (Member # 10300) on :
I already posted my list, TC, but wanted to add:
I presented to my PCP in Oct 2000 with a bullseye rash. It had started out about the size of a quarter and by the time I went to his office 2 weeks later, it was about 5" across.
The PCP noted that I did not see a tick. But, he actually ordered the Elisa and WB (from Quest). Of course, they were both negative.
Negative tests = no lyme = no treatment. Lucky me!
When my body finally crashed in Oct. 2006, the PCP told me that the only abnormality that he could see was that my B-12 levels were on the low side. So the cause of my over-exaggerated symptoms was probably due to my body being overly sensitive to lower B-12 levels.
Shesh . . .
Posted by wiserforit (Member # 9732) on :
Migraines Vestibular Neurinitis Otosclerosis Mononucleousis Chronic Fatigue Environmental Allergies Depression Diverticulitis Anxiety Get this...weak knees Whiplash residual Syndrome X Food Sensitivities Oh, and my favorite: "Could be MS or Cancer"
Oi, Wiserforit
Posted by shazdancer (Member # 1436) on :
Son:
tick bite, age 5
trouble getting classwork done, age 7
panic attacks, age 10
depression and dysgraphia, age 11
depression and oppositional defiant disorder, age 12
+ for Lyme, age 13
Posted by groovy2 (Member # 6304) on :
Depression
Mental Disorders
MS
Making it up
HellifIKnow-
and Most often you are Waisting My Time-
Finally I figured it out before it killed me- --I was LUCKY --Jay--
Posted by dbourne (Member # 13833) on :
Lupus.
I have a letter signed by my old infections disease doctor in Tulsa stating that there was no possibility that lyme could continue after my 30 days of treatment.
Posted by daise (Member # 13622) on :
Since puberty: Signs and symptoms of bartonella but no diagnosis(insomnia, soles of feet red with pins and needles, and burning.)
Starting at age 52: Stroke (misdiagnosed, actually Bell's palsy) Severe hypothyroidism Bone infarct in right leg PCOS Myofascial trigger points Neck out of alignment with spine at C1 and C2 Fibromyalgia / chronic fatigue Menopause (false!) Depression (no antidepressant) Lyme, bart and babs
Posted by arc35476 (Member # 12786) on :
RA Lupus Possible MS Possible Cancer Poor eating and lifestyle choices Depression Crohn's Disease IBS / ulcer
It has to be one of these because THERE IS NO SUCH THING AS LYMES!!!!!
(Ha. LOL! we know that's false!!! And don't you love the addition of the "s" on the end of Lyme????)
Posted by roro (Member # 13383) on :
PCOS migraines chronic sinusitis hepatitis C 1995 lyme disease w/EM (but cured with 30 days doxy ) 1 yr later - arthritis in knees chronic fatigue syndrome anxiety/depression HHV-6 IBS GERD autonomic dysfunction POTS fibroids - hysterectomy chronic bladder infections 2004 hospitalized w/ meningitis, pleuro-pericarditis with unknown "virus" cranial nerve palsy bell's palsy stevens johnson syndrome bechet's MS GBS myasthenia degenerative disc disease ALS AS
Posted by whatayear (Member # 15833) on :
was told I have panic attacks then possible MS possible lupus possible RA then was told I had fibromyalgia the GAD
Posted by cordor (Member # 9449) on :
Dehydration Malnutrition Otosclerosis Fibromyalgia Multiple Sclerosis Dermatamytamosis Stress "Fever of Unknown Origin" Must be Lupus Hypoglycemia TMJ Trigeminal Neuralgia Asthma COPD Costochondritis GERD Irritable Bowel Syndrome Spastic colon Anorexia Nervosa Ocular migranes Herniated disc in neck "Must be HIV" Cancer "somewhere"
I have been told I have ALL of these....but of course there IS no such thing as CHRONIC lyme....you just have EVERYTHING ELSE under the sun. And I am sure I forgot even more of them.
Posted by cordor (Member # 9449) on :
Oh I forgot the latest one - Benign Positional Vertigo- aka "BPV" (professional term) and also "food poisoning" Posted by not so sublime lyme (Member # 15185) on :
I'm not exactly sure when I contracted Lyme---I spent all my summers growing up either playing or working on Fire Island, NY (the tick capital of the world!) But I didn't pursue any diagnoses until I was a young adult, so I'll list those:
fibromyalgia chronic fatigue syndrome costochondritis sjogren's syndrome ankylosing spondylitis pleurisy connective tissue disorder, tendonitis ADD anxiety disorder sleep disorder restless legs syndrome IBS GERD TMJ inguinal hernia hiatal hernia chronic sinusitis environmental allergies chemical sensitivities vertigo arrythmia/mitral valve prolapse autonomic dysfunction uterine fibroids migraines degenerative disc disease stomach ulcers vitamin D deficiency "severe neck sprain" (although I had no injury to neck--just couldn't move it--excrutiating pain) infertility (but seven years of experimental treatments and surgeries paid off--3 kids!!)
I had to laugh when I looked at my list. I sound like a walking disaster. That's one of the weird things about lyme----everyone (including my llmd) always tells me..."but you LOOK so good". Maybe if we looked a little worse, people would take us more seriously!
Posted by Salty Sue (Member # 11929) on :
I always figured if I had turned green then I would have been diagnosed, treated and on the road to wellness in no time at all. Unfortunately I always look so healthy!
Posted by Robin123 (Member # 9197) on :
Torticollis (stiff neck)
Repetitive strain injury (RSI)
Brachial plexus disorder (part of RSI)
Fibromyalgia - the main label I got. FM was thought to be possibly a post-viral syndrome. I had had a lot of herpes infections prior to FM, so I accepted that explanation as to what had messed up my body.
Myofascial pain syndrome
Back injury
Poor posture
Costochondroitis
Chronic pain syndrome
Depression
Stress
Anxiety
Undetermined amount of functional overlay (meaning I was getting something out of being not well)
Bad relationship with family
TMJ
Pituitary tumor/hormone disorder
Candida
Chemical sensitivity
[ 23. June 2008, 09:05 AM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
quote:Originally posted by cactus:
My older son made a video game out of it called "Pin the Diagnosis on Mom" - doctors throwing different diagnoses. Good game. Bad ducks.
Cactus, that's a good visual!
Posted by Curiouser (Member # 14128) on :
I do have many of these either in addition to or as a result of the lyme, but they were offered as stand-alone dxs for all my symptoms at the time
And the kicker - if I only lived a "healthy" lifestyle (proper diet, supplements, exercise, sunshine), I'd get better.
Did that for close to a year and got worse. Go figure. Posted by Geneal (Member # 10375) on :
Lupus
Post Traumatic Stress Disorder
Congestive Heart Disease
Generalized panic/anxiety disorder
"It's all in your head" diagnosis
Kidney failure
Fibromyalgia
Pre-Diabetes
Hugs,
Geneal
Posted by 1Bitten2XShy (Member # 12280) on :
I had many, but my 2 "favorites" are:
PCP = You just need to pray more and handed me a religous medallion of his.
PCP = When he figured prayer was not working, he told me I had Leukemia!
Posted by tickedoffjan (Member # 15944) on :
Okay here it comes:
Migraines
Menieres Disease
Degenerative Disk Disease
Herniated Neck and Lower back Disks
Heart Murmur
Mitral Valve Prolapse
Dehydration
Allergies
Fibromyalgia
Chronic Fatigue
Anxiety
Depression
Chronic Sinus Infections
Insomnia
I probably left off another 10 or so but because of the fog I am unable to think clearly.
Posted by Serenity (Member # 7642) on :
Posting for my husband who contracted lyme in 1990 while visiting in Connecticut. We live in NC though so all physicians seen were from NC, with the exception of a week at Mayo Clinic which resulted in no diagnosis, more of a "go home and stop faking" type message.
In 2002, 11 year old daughter found an engorged deer tick on her while back in Conn. and tested CDC positive for Lyme. For about three years she kept saying, "Daddy, you have Lyme!" At her next LLMD visit, he made an appointment with her doctor. My husband has never had a positive Lyme test but has been treated on a clinical diagnosis since 2005.
In "fairness" I do have to say that the possibility of him having Lyme was considered by many specialists he saw and he was given the standard Lyme tests each time. They just were ignorant about looking outside of the "party line". I am seeing a slow but encouraging attitude regarding the possibility of Lyme disease in the absence of positive testing among NC physicians in the past year year.
Every little bit of knowledge is better than where we were four years ago when my daughter's pediatrician called our home at 9:30 at night to warn us that her IDSA buddy in Winston Salem told her it was her "professional responsibility" to let us know that the care our daughter was receiving from her NC LLMD "amounted to quackery"! Progress is slow, but it is progress.
Here is my husband's partial list, I can't possibly remember them all:
Chronic fatigue Possible lupus (often considered) RA Sleep disorder deviated septum causing sleep disorder which was causing all the other symptoms surgery for deviated septum which would cure sleep disorder which would relieve all the other symptoms (not) depression cellulitis-several times chronic sinusitis food intolerances allergies cytomeglovirus (or something like that, sounded ominous) fibromyalgia hypochondria/malingering "we've never seen anyone get as many strange infections as you!"
Posted by kam (Member # 3410) on :
Labels such as MS, Myasthenia Gravis, AL's, Parkinson's, Lupus, Valley Fever, etc were suggested but then ruled out for the most part.
EBV but also had doctor's say that they thought after a certain age everyone tested positive for EBV.
I guess. I did not go back to UCSF or Samsun clinic to get their final dx..ran out of insurance.
Knew enough then to know that when it comes to lyme disease many of the doctor's don't have a clue.
A couple of local primary docs suggested fibro, stress from work, CFS, see a shrink
Saw a pyschiatrist...he talked with me for an hour.
Said symptoms were medical not pyschological and to find a good MD>
Saw a person who specialized in fibro...said he did not know what I had but it was not fibro and to get back to him when I found out as he would like to know.
Had doctor's also who did not believe in fibro or CFS.
Insurance got in the way big time of getting a dx as most docs needed to stay within the insurance box for testing and sending me to specialists or not....mostly not.
If some of those bizarre symptoms I had that came and went for years before I was too sick to work or do household chores were lyme...
I was told at the time..
stress
silent migraines when I could not see or hear..it would come and go
inner ear infection when the classroom would spin around
bad marriage....need to get out of it (they were right, but medical needed to be looked at too.
Mycoplasma was mentioned by one doc but she would not do what it took to get approval from insurance to get the testing.
She also would not send me to a doc at Stanford that had been recommended because she would not get her quarterly bonus if she did so.
I found many of the primary doctor's in the small town I lived in would wait 3 months before telling me insurance had denied something.
Then, when I called insurance to see what needed to be done to get it through they would tell me the doctor's office never asked.
I started catching on after about the 4th primary doctor...yep...lyme brain ya know and being naive about the medical field..thinking they were there to do all they could to find out what was wrong and help me get my health back.
Silly me.
Posted by riverpatrol (Member # 12182) on :
TMJ torn rotator cuff mystery knee injury gout osteo arthritis arthralgias sinusitus rheumatoid arthritis
Posted by Tincup (Member # 5829) on :
Holy COW again!!! This is insane!!!
Why don't they think Lyme FIRST?
Grrrrrrrrrrrr....
Anyhow... you all are wonderful to post and share. I will not tally up yet.. as I figured we need at least 120 posts here to make 100.. as some have posted 2 or more times.. like me!
So keep them coming and know that I appreciate each and every response!
This list is going to be miles long!
Posted by Sojourner (Member # 9424) on :
OK, here goes---short and sweet.
Husband- MS Sister-MS Daughter (16) Bipolar/Depression/OCD Daughter (11) Kawasaki Disease (an incomplete case)
Posted by djf2005 (Member # 11449) on :
sweet i get to be 100.
MS, Lupus, FM, depression, anxiety disorder, and youre fine.
there's a lot more, thats what comes to mind at the moment.
derek
Posted by FuzzySlippers (Member # 13658) on :
These are diagnoses I've received over the past eight years. I have other diagnoses from years prior to 2000 but am too tired today to try and catalogue them all.
Some of the diagnoses I've gotten have, indeed, been valid in that I now know that they are secondary complications and/or health conditions resultant from my Lyme and Co-Infections.
I've had Lyme a long time. I was re-infected in 2005 by the bite of a sandfly and that's when my Lyme and new symptoms of co-infections reared their ugly heads to the point where I simply could not deny my obvious decline.
Diagnoses Since 2000:
Kidney Stone
Systemic Candidiasis-Candida Related Complex
Late Stage Adrenal Fatigue/Exhaustion
Estrogen Dominance and other hormonal deficiencies (i.e., very low DHEA, very low pregnenolone and cortisol)
Irritable Bowel Syndrome and Leaky Gut(also two bad bowel bacterial infections- citrobacter freundii and C. Difficile which appeared before my Lyme diagnosis and Lyme Treatment)
I've had 5 surgeries in the past 7 years (e.g., kidney stone removal, D&C's, pelvic laparoscopic surgery - nothing found from this surgery - my pelvic pain was a direct result/symptom of Lyme and Co-Infections, etc.)
Loads of Gyn issues and problems (i.e., uterine fibroids, uterine cysts, recurrent infections, ovarian cysts, etc.)
Lupus
Depression
Recurrent upper respiratory infections (ear infections and sinusitis)
Allergies
Whiplash (was told that my neck pain and stiffness was whiplash as a result of my choking-type frequent cough -- the cough and neck issue was Lyme!)
Multiple vitamin and mineral deficiencies
And was told by the family doctor (internal med doc) that "Obviously you are infected with a bacterial infection of unknown origin."
Grief (Yep. A doc said my symptoms were probably caused by grief)
Of course, the above doesn't even include all of my symptoms. Were I to include them, I'd end up posting a tome.
If I can think of anything else, I'll revise this.
Hope this helps, TC.
Fuzz
Posted by teresambear (Member # 15061) on :
anxiety panic disorder PRE-MENOPAUSE TMJ depression benign fasciculation dosorder possible fibromyalgia allergies sinusitus
Posted by teresambear (Member # 15061) on :
OH Forgot to Add The Main One HYPOCHONDRIA !!!!!!!!!
Posted by lymednva (Member # 9098) on :
I don't think I have replied to this, so here goes! Some of these were for real, but I now see are related to Lyme, compromised immune system, etc.
Warning, since I've been ill for over 40 years, this is long.
In OK
Severe headaches in junior high- psychosomatic
recurring strep throat in high school - this was for real, but I now see was due to my immune system being compromised
In college, no dx, but had only one all-nighter. Felt so bad after I swore never again!
In KS, no dx, but here's what occurred:
1974 - Had first Rubella vaccination because I was working with young children, never had rubella, and knew we wanted to start a family in a year or two.
Back to OK
1975 - at first ob-gyn appt. with first pregnancy - no rubella immunity. Hmmmm.
During first three months of pregnancy, had what I thought was morning sickness , but I now realize was dysautonomia. My BP at appointments was always 90/60 and I felt better when lying down.
Looking back through old photos, I noticed spent a LOT of time lying down, pregnant or not!
1976 - after birth of first child, received second rubella vaccination.
Try sauna for first time. Can't breathe, so leave.
In VA
1978, first visit to ob-gyn with second pregnancy - no rubella immunity.
This time "morning sickness" lasted five months!
1979 - third rubella vaccination
1981 -
third pregnancy, no rubella immunity - doc says, "maybe you have immunity, just not enough to show positive on the titer." Ah...intelligent doc! Still love him, but he's about to retire.
"Morning sickness" was worse than ever. Doc's response (the guy I love) -"It's because you are middle-aged." I had just turned 30.
Mid-80's
Unable to drink caffeine after 2 PM, or cannot sleep at night.
Notice I have less energy than friends with kids when they are able to get up and run after their kids, and I simply sit and call to them.
Need naps on the weekends
New dx: multi-nodular goiter I decide this is the reason I fall asleep after teaching afternoon preschool, am tired on weekends, have low energy.
Realize I cannot take antihistamines during day because they knock me out -my dx now - drug sensitivity.
1989 - return to work full-time, first time since 1975, pre-pregnancy
Can't do anything else except work, care for kids, drive to activities, try to keep up with house. Feeling stressed
See endocrinologist - tells me I need to lose weight (duh!). I tell him I am stressed out from work, home, eat due to stress. His reply, "You need to learn to deal with it." Huh? How? No clue!
1990's
Working 30 minutes from home. Exhausted when I return. Sometimes have trouble staying awake on drive home.
Energy levels are low.
Frequent sinus infections lasting minimum of six week, every fall and spring. Sometimes last longer. Duck rolls eyes when I go back after first round of abx.
Every summer, after school ends, I am exhausted and sleep for two weeks. Hubby says this is not normal, wants me to go to doctor.
Ducks says, my body is just adjusting to the different activity levels.
Hubby traveling a lot. I am exhausted and/or sick when he returns. He claims I am "faking it."
Hubby returns from month-long trip to Russia. I have severe strep, which duck's office tells me is normal not to feel better after 4 days on abx.
Throat feels better, but I have missed 3 days of school, unable to cook full Thanksgiving dinner.
Week later develop cough. After it doesn't resolve I decide to go to duck to see if it's bronchitis. It's pneumonia! When doesn't resolve duck rolls eyes , again.
Sends me to get chest x-ray. Surprise! It's still pneumonia!
Miss three weeks of school and rest during winter break. Finally resolved after third round of abx.
January 1996, during huge blizzard, hubby shovels snow (first clue there's something wrong!), finds neighbor to take him to subway so he can go to NYC for pre-planned business trip.
Calls me from train and tells me there is a letter on his desk for me. Instinct tells me not to open until the next morning.
Letters says he's leaving me. I'm stuck at home with three kids (oldest home from college), can't get out, devastated.
Begin psychotherapy to deal with divorce. Begin having neck and shoulder pain, headaches. Therapist says those are all signs of depression , makes sense since I am going through major trauma.
Duck give me rx for Prozac. As summer progresses I am feeling worse and worse. Increase dosage, still not helping.
Duck sends me to psychiatrist, who changes meds, and gives me something to help me sleep.
Going through divorce, getting house ready to sell with no help, moving out, I end up with torn meniscus.
Surgery six days before school starts, but orthopedist assures me I will be able to start school. Takes me longer to heal than expected.
By end of September I am exhausted, feeling what I have been told is "depression." After discussion with therapist decide to check myself into mental hospital .
Spend two weeks there, feeling worse when I leave than when I went in. Use up all sick leave and take one month of unpaid leave.
Still not feeling well. Wake up in AM, eat breakfast and need to go back to bed. Psych duck says that's normal, I have been through a lot and it will take time to recover.
Return to work part-time in mid-Nov. full-time in December. Live for weekends and holidays, so I can sleep.
Therapist begins to suggest that this appears to be more than just depression, perhaps something physical.
Go to duck who runs basic tests and pronounces me to be fine.
Slowly improve, still have difficulty sleeping, sensitive to stimulants and caffeine. Live with Diet Coke in my hand at school. Only way I was able to remain at work for the last few years.
1999 - endo tells me I am pre-diabetic over the phone, sends me to diabetes educator who says there is no such thing, I am diabetic.
January 2001, go to gyn due to heavy periods. He asks for all recent test results, so I have them faxed to him. Tells me I am hyperthyroid. Endo never called to tell me this.
Runs other tests and tells me my night sweats and insomnia are NOT due to menopause , no longer hyperthyroid, wants me to follow-up with endo for further testing.
Go for further testing, but falls through the cracks.
Begin to have increased neck, back, and shoulder pain. Muscles can't relax. Start getting therapeutic massages, which help temporarily, but can't even stay relaxed through entire massage.
Friend tells me my back is like a rock. Another suggests I see her chiro. He does x-rays and pronounces my problem is scoliosis.
I am thrilled because I think I know what is wrong with me. I look in mirror and can clearly see that my neck is completely out of alignment. After a few months of treatments I decide this is not helping and stop.
Feeling worse and worse, what I had always associated with "depression." Go back to psych doc and he tells me there is only one anti-depressant I haven't tried ( wrong!) and puts me on Effexor.
I start on it and begin to suffer from severe anxiety. Affects my ability to teach. Go into tears over nothing. Begin having panic attacks.
Psych doc repeats there is nothing else he can put me on for depression, the anxiety can't be cause by the Effexor (I later checked and he was wrong).
Puts me on Buspar for anxiety. Gives me sample pack and rx to fill when I finish the pack. I fill rx and begin taking the dose on the rx.
Begin to feel much worse. All symptoms seem to be worse. I can barely function at school. After a few days I looked at the sample pack, which I just happened to save, and noticed that the increase in dosage from the pack to the rx seemed way too much.
I try calling psych doc, but his voice mail is full. Call pharmacy and ask about dosage level. Tell me that it is twice as much as normal high dose, but sometimes docs write for more.
Check their files to make sure they did not make an error and tell me they have the written script and the meds I have are what was written. Suggest I call doc. Finally get through to voicemail and leave message.
Stop at pharmacy to get photocopy of script so I can have info when I speak to doc. Finally connect around 10 PM. He proceeds to tell me it is a pharmacy error.
He would never have written it for that much. I tell him I have the script and that is what it says. Then he tells me I must have misunderstood what it meant.
Tells me to just use the pills I have to take the right dosage. I tell him I don't know how to make that dosage from the pills I have. They will not divide that way. They are scored, but not for dosage he wants me to take.
I am in tears and he keeps telling me to calm down. Easier said than done! I try to explain the dosages on the pills and how I can't divide them like he says.
Then he tells me to take three times day instead of two. How was I supposed to figure that one out?!
That summer sell my house and my mom's so we can move in together. She was 90. In addition, son comes home in psychotic state. Hospitalized twice, dx'd bipolar disorder.
In the midst of moving I discover a large lump in one breast. This is not the first time I've had this. Turns out to be cyst.
Move, go back to work next day. After three weeks I take day off due to exhaustion and medical appointment. Decide I will stay home rest of week because I am feeling worse, rather than better.
Cannot walk dog more than a very short distance. Used to walk half mile or more.
Dx'd with low WBC count. Develop infection in toe and since it rapidly moves up my foot I go to ER. They treat with IV Cipro. When done I am so dizzy I can't stand up without holding on to walls.
Tell me it's because of low blood sugar (it's 4 AM, so I am too tired to think) and give me OJ to drink. I get up to leave and still cannot walk without holding on to walls. Now realize this was herx.
After two days on Cipro I called to ask for different abx. When I was running errands I felt so bad after standing in line that I began to get dizzy, Always felt better when I got in my car. Strangers looked at me and were concerned.
I continue to feel worse and worse and call in sick again at school. I initiate the STD process. At the time the only dx I have is depression , from a new psych doc I am seeing.
As I watch my health continue to get worse and am unable to even figure out what is wrong with me my therapist suggests that it appears I have what she has recently been dx'd with, CFS and FM.
She gives me the name of her doc, but he is out of my network, so I try to see a rheumatologist others have recommended to me. He was a disaster. Told me he didn't believe in CFS and IF I had FM there was nothing he could do for me! I left in tears.
Went home and got the number of the other doc and made an appointment. Couldn't get in until December, but at least I had hope.
Meanwhile I could only sit up for a few minutes without becoming totally exhausted and needing to lie down and sleep.
Often I threw my legs over the back of the sofa, where I spent my days, because it helped me feel better.
Being single, I still needed to drive, at least sometimes. I did get rides to appointments. But when I drove I put my feet up on the dashboard at stoplights.
Finally at my appointment I was dx'd with "profound dysautonomia," CFS, and FM. The first thing he began to work on was my dysautonomia.
By January I was feeling a lot better. I figured that if I continue to improve like this I would be able to return to work part-time in March and full-time in the fall.
I did return n March, but by May it was obvious that I couldn't keep up that pace. I talked to my doc about filing for disability and he was totally supportive.
Over the years I posted on a few message boards. The one I frequented most had a lot of people who had originally been dx'd with CFS and/or FM now being dx'd with Lyme. I began to explore Lyme and finally asked my doc to test me through Igenex.
He spouted IDSA nonsense and printed out a copy of some report about Lyme, obviously from IDSA.
Later I tried going to a doctor I was told was a LLMD. He wasn't, and ran and ELISA, which was negative, so that as the end of that. I didn't know where else to turn.
Then, over a year after my original request my doc asked me if I had been tested for Lyme. I told hm I had asked him to do it, but he didn't do Igenex. He said he was now running Igenex testing. He was becoming Lyme Literate.
He did the testing, and while mine were negative overall, I did have a few ind bands that were significant. Based on my history he began treating me.
I finally had a correct dx of Lyme Disease, and Babesia WA-1. I also herxed on bart treatment, so believe I also have that. and after a few months began to feel better. That was over two years ago.
I've been ill for over 40 years, so I am not expecting miracles, but do believe I can get better than I am at this point.
Posted by breezywings (Member # 9222) on :
All the memories come flooding back...GRRR
Chronic Fatigue Syndrome
Arthritis
Possible MS
Allergies
Menopause
Fibromyalgia
Anxiety
Depression
Thyroid problems
et al.
Posted by TerryK (Member # 8552) on :
Rheumatic fever
Allergies to abx (turns out I'm not allergic, just a herx)
Growing pains
IC
Fibromyalgia
Chronic Fatigue Syndrome
I have many other illnesses - most if not all probably related to decades of chronic untreated infections. They are real illnesses so they are not mis-diagnosed.
The worst thing of it is that they found some pretty severe abnormalities 20 years ago that they told me were the cause of my illness and that I would get better as I aged. For that reason, I didn't continue looking for answers for years.
I finally started looking again when I developed fibromyalgia. They tell fibromyalgia patients that they just have to learn to live with it so it took time to realize that there could be a lot of reasons for fibromyalgia and that the medical community doesn't know what it's doing with these types of illnesses.
When I finally realized it could be lyme, I couldn't find a doctor who would run a test because "we don't have lyme in Oregon". We are endemic here but we don't have lyme?? I didn't push too hard because I thought it was only a remote possibility since we don't have lyme here or if we do it is very rare!!
I finally got a fibromyalgia doctor who agreed to run the test. ELISA came back IND and WB came back IgeneX positive. 3 doctor's told me it was negative and not the reason for my illness.
Then I found lymenet. If it weren't for lymenet telling me how to get an LLMD, I'd probably still be wondering what is at the bottom of my illness.
Lack of Coordination/and Balance Issues as well as Left/Right Disorientation problems.
Usual childhood diseases [Measles,Mumps,Chicken- pox].And Tonsilectomy/addenoidectomy age 4.
Grade School years: Also Pneumonia w/ ongoing *listing above* from Early childhood and Growing pains continuing thru...
Junior-high-thru- Highschool : Strep throat,Mono-, Various flu like Symptoms, Heartburn,stress. Possible Reflux, Ulcer etc.Painful Chest Spasms/w/ extreme Drop in temperature[like 93'F I think].
Various *Gyn' problems from Age 14[hmm also when I had Strep and Mono' together].Dysmenoreah/Amenohreah,Dx'ed as Adult w/ Endometriosis and PCOS resulting in Total Hyst '94.
Interstiatial Cystitis, frequent cyst problems at base of bladder/end of Urtital[sp.?] tubes.
CFS/FMS/IBS/TMJ/and Tinnitis
Gall bladder Disease/gallstones[ surgery '04].
Rt. Neuro Migraine/Migraine Variant/Migranic 'Seizures etc.
///// '95 CT scan Brain: Rt, Frontal Lobe small sub-Aracnoid Cyst of " Doubtful Significance..."/////
Yeah,thats why I have White Matter Lesion disease now,w/ 2 demilination lesions on my brain now.
Possible Prolactinoma on Pituitary[?] negative [ Milk in breasts for years],
Deviated Septum w/ all the Sinusitis bit...
Pneumonia like illness w/ *lung bleed [*burst Alvioli sacs]in '01.
Frequent bouts of dizziness,
Loud noises sensitivity and Light sensitivity/Photo sensitivity... Did I say Chostachondritis and Pleurisy at various times?
After HS Graduation,College: Thoraxic Outlet Syndrome [w/ extra cervical ribs,surgery later in '82 w/ collapsed lung], and Continuing w/ the above issues.
Allergies, severe to Oats from Jr High on... Frequent weakness/ knees weak, and would give out Sr.year highschool... Hospitalized -called- an " Unknown Virus w/ Neuritis".
Endometriosis, at least Five miscarriages, Neo-adanoma Tumor/Cyst rt. Ovary fallopian tube,
Tested several times for MS, indeterminate. " " " " " " " " " Myastehnia G. negative.
Hopefully I haven't repeated much info' Sure I forgot some stuff... Looks like everyone elses list... I've had issues sinceI was a tiny tyke.worsenig at around 14, never got really well...I'm 51 now...Jus' confused Silverwolf here in SE Idaho.
[Hope this helps w/o being too confusing.]
Posted by Silverwolf (Member # 9196) on :
Since the Lyme/ BArt diagnosis in '06 ... We've found out about an MVP problem and the White matter lesion disease/brain .
Prolly didn't mention Dequervanes tendonitis RT. wrist/hand/arm [spent '95 summer in a cast from it].
I'm gonna go wander...and pack more boxes for our move...before I tax anything else...
Jus' Silverwolf...cornfused as usual.
Posted by heiwalove (Member # 6467) on :
somatic delusional disorder -- this is the 'diagnosis' that got me locked up for five months in two separate psych wards, including a state hospital.
also: IBS, interstitial cystitis, depression, anorexia, panic disorder, chronic fatigue syndrome, possible MS, hypochondria, nothing. mitral valve prolapse, but that was post-lyme and coinfections diagnosis.
Posted by jigaram (Member # 15954) on :
The first pediatrician I took my daughter to said that it was probably a SPIDER BITE!! LOL. And that I was overreacting.
You would think in a tick/Lyme endemic area the physicians wouldn't be so ignorant. And the symptoms were probably the flu going around in school.
The second pediatrician I took my daughter to was not sure it was Lyme.
I see flyers educating the public but where are the ones educating the physicians?????
Posted by darla135 (Member # 15688) on :
Chronic Fatigue Syndrome
Endometriosis
Interstitial Cystitis
Chronic Sinusitis/Allergies
Hypothyroidism
**Note: all of these are actual conditions I have but no one could fully explain my symptoms with them.
Posted by Tincup (Member # 5829) on :
Update...
Been hand writing the lists. About 200 different diagnosis so far.. and have only gotten 2 pages done!
Thank you all... good information. I am going to go count to be sure we have at least 100 people with a list.
BTW-
Questions...
Tailz... what is pcos?
bobidour- channeling powers?
Thanks again everyone!
Posted by Tincup (Member # 5829) on :
ALMOST THERE!
We need 12 more people to respond that haven't already.
Anyone?
I know this is hard to do and I am really impressed by the details and time it took to do it. Hope it didn't bring up too many bad moments or memories.
Posted by joysie (Member # 11063) on :
"Conversion disorder" (you had a real illness, babesia, it is gone but you need psychiatric help). Posted by klutzo (Member # 5701) on :
endolymphatic hydrops
multiple sclerosis
depression
fibromyalgia
Posted by pj1954 (Member # 11722) on :
arthritis,fibro,chronic,fatigue,gerd,ibs,migranes,myofacial pain syndrome,chronic sinus infections, had pnemonia 2x and heres the kicker cushings disease all incorrect dx's in reality it was babesiaa all along.
Posted by aiden424 (Member # 7633) on :
K, I am chiming in my two cents worth, I am 31........ Pseudotumor Cerebri myofascial pain disorder 3 different jaw disorders uterine fibroids uterine and ovarian cysts have had cervical carcinoma in situ PCOS fibrocystic breast tissue EBV CFS Fibro Lupus(possible) Migraines Cluster headaches spastic colon IBS GERD severe gastritis have had gallbladder removed ALL THE DIGESTIVE ISSUES WERE DX'D BY SCOPING hypochondria PTSD OCD GAD (Generalized Anxiety Disorder) Chronic anxiety Depression Arthritis psoriasis eczema pityriasis rosea
That is all I can think of at the moment, but I know there are a few more
Posted by Tif (Member # 12701) on :
OH YEA.. Hypothyroidism Adrenal fatigue various endocrine abnormalities inappropriate sinus tachycardia supraventricular tachycardia with PVC's and PAC's mild valve regurgitation
Posted by daise (Member # 13622) on :
I'm sorry. Please add carpal tunnel.
daise Posted by bettyg (Member # 6147) on :
hi tincup,
just to clarify; you have 200 DIFFERENT ILLNESSES/SYMPTOMS diagnosis.
you are NOT copying everyone's laundry list; just the DIFFERENT ones not mentioned earlier right?
been interesting reading them all! uffda; what we all have been thru. later... Posted by GADaisy (Member # 12964) on :
For me: Asthma Psychosomatic disorder Depression
Posted by Mtgirl (Member # 13278) on :
Upon getting an MRI of my head, it was found that I have a Chiari I Malformation. Because I was referred to a neurologist, he thought this might be causing my sympptoms. I mentioned lyme to him, as I had had a previous physician confirmed EM rash in 1998 with no treatment to follow. In order to just get me out of his office and to have someone shoot down the lyme suspition, he referred me to Infectious Diseases at a local hospital. After a very thorough history and many labs (all negaitive) the Infectious Disease doctor diagnosed me with lyme an scheduled a picc line to be placed with 30 days of IV rocephin. I found a LLMD to continue my IV treatment after the 30 days was discontinued by the ID docs. Finally, after 10 weeks of IV rocephin, and 6.5 months of oral antibiotic therapy, I tested CDC positive on a Westen Blot conducted at the hospitals lab.
Posted by AliG (Member # 9734) on :
Answering your ?? to Tailz - "PCOS" = Polycystic Ovarian Syndrome
simultaneous Strep Throat + Kidney Infection (suspect cultures not run as vials of patients blood were found in Dr's garage fridge/freezer when he was arrested on drug charges)
Peptic Esophogitis
multiple Upper Respiratory Tract Infections & bouts of Bronchitis
Pneumonia
Stress
Anxiety
PMDD-Premenstrual Dysphoric Disorder
FUO-Fever of Unknown Origin (I gave up, thought it was probably the thermometer)
Simultaneous Dxs- Depression, Allergies and Dr was working on Dxing Sleep Apnea, when I was bitten by a reduviid bug (vector for Chagas) and went to an ID (to whom I spilled my guts over every Sx, Dxd disease and possible exposure to any possible infectious disease that I'd ever had) only to get the following Dx:
Multiple Somatoform Disorder-"multiple somatiform complaints indeed", "complaints numbering 20-30", told "consider alternative therapy such as massage, physical therapy and acupuncture for possible control of some of her symptoms"
TMJ
The flu, followed by Irritable Bowl Syndrome and mild Proteinurea
Astigmatism
"Broken blood vessels under the skin" at age 12(circular petechial rash, Derm attempted to burn the vessels I couldn't take the pain & decided to live with it, recently Levaquin made it go away so it may have been Bart-related???)
???-(On Biaxin XL)-"I have no idea why you're reacting to the Biaxin like that. I've never seen this before. It doesn't appear to be allergy." (pinpoint rash all over abdomen & extreme air hunger, requiring albuterol & Advair to get through the 10 day course of ABX)
???- (On Amoxi) "I have no idea what that rash means. It doesn't appear to be allergy." (same pinpoint rash covering abdomen as appeared previously on Biaxin, different duck - same practice)
That's all I've got for now . If I think of anything else, I'll tack it on later.
Posted by AliG (Member # 9734) on :
PS-
Dxd with ??? - had fluttering in chest during pregnancy, (heart sonogram thingy ??? )was normal,
never received the Holter Monitor from the Cardiologist,
the fluttering stopped and I had a baby so I didn't really care as long as it didn't come back.
Posted by Lauralyme (Member # 15021) on :
Benign positional disorder (to explain the vertigo) Anxiety Peri menopause (I'm too young) Bronchitis Bursitis of the hip Chronic Fatigue Syndrome Lesions appeared on MRI the neuro wants to do a spinal tap to rule out MS.
Posted by jklynd (Member # 7550) on :
Fibromyalgia High Blood Pressure Irritable Bowel Syndrome-Was given meds for ulcers
Posted by LisaS (Member # 10581) on :
panic attacks black widow bite desert valley fever (even though symptoms started in Wisconsin) carpal tunnel inner ear infection sinus infection ulcer acid reflux mostly anxiety disorder Posted by coffeebehm (Member # 15048) on :
Hi, I was dxd with
12/2006-neuro said " Basilar migraines and Benign Fasiculation syndrome" (at the time I had a positive IGM band 23, but was never told and new nothing about LYME Test from neuro)
4/2008- neuro again said BFS and to go home and have a drink.
Three days after that wonderful wrong dx from neuro, primary dr tested me for LD and it came back positive.....
I only wonder how things would have been if I would have been treated 2 years ago....
Posted by KS (Member # 12549) on :
Possible:
MS ALS Addison's Disease Post-partum depression Gastroparesis (did have this but wasn't the cause of making me so sick, just a by-product of lyme)
Posted by Clarissa (Member # 4715) on :
clinical depression stomach aches (kid trying to get out of school) fear of having BM's (as a child) hypochodriac/faking/weak constitution over-sensitivity EXTREME anxiety, SEVERE OCD by the time I was 8-years-old allergies swollen eyes codependency on Mother (anxiety) fear of leaving home (anxiety) homesickness (anxiety) mono thyroid problems mytral valve prolapse of the heart horrific mind-blowing two weeks worth of PMS (every month for over a decade) mind blowing stiff neck (like in a vice grip) freezing feet, hands and nose even in CA & FL severe lower back pain (had to take steroids for my "slipped disk") herpes simplex on my chin in a clock like circle? skin tags conjuctivitis bladder control problems melasma of the skin chronic insomnia extreme daytime fatigue rage impulsivity "psycho" risk taker crazy one in the family; black sheep promiscuity heart palpitations acid reflux extreme stomach pains/GI Tract issues chronic sore throats thrush (several times) vomitting sensitivity to light, noises, smells warts severe acne germ issues compulsive washing/bathing tmj clumsiness, dislocated knee from swinging a bat self-hate weird reactions to food...swollen lip suicidal thoughts hopelesness, envy, jealousy due to low self-esteem ingrown toenail fungal toe infections soft teeth (14 cavities first check up as a child) roasecea of the skin anorexia body dysmporphic disorder night sweats delusional thoughts ritualistic behavior headaches severe back acne reclusivity/turning off phone/towels over windows overdose of xanax actions without thinking of consequences smoking cigarettes and other incapable of trusting or being truly intimate on an emotional level inflexible/afraid of change my way or the highway self-blame for almost everything irreverent alone
Posted by lpkayak (Member # 5230) on :
rheumatoid arthritis fibromyalgia irritable bowel syndrome depression toxic shock syndrome menopause (sweats)-i didn't really go thru menopause for another 10 years chronic conjunctivitis
[ 24. June 2008, 10:48 PM: Message edited by: lpkayak ]
Posted by laura j (Member # 14257) on :
Interstitial Cystitis IBS Hyperventilation Sitting wrong way causing numbness!!(in arms too?) Right pupil more dilated(told neuro but didn't know why, still don't) Posted by lightfoot (Member # 2536) on :
Tincup.....I can't imagine that you want to hear more!!!
Atrophied thyroid....removed with nodule
Nutrient deficiencies
Heavy metal poisoning (mercury)
Food, inhalant, chemical allergies
PMS
Menopause....
Hormone imbalances
Miscarriages (3)
Adrenal Exhaustion
MCS
Arthritis
Asthma
Candida
Depression
Bi-Polar
Fibro
Chronic Fatigue (self dx)
Despite all......there was a part of me that thought ALL of it was in my head. Health care professionals confirmed it by their attitude toward my complaints.
Good luck & Namaste......
Posted by MysteryGirl44 (Member # 10201) on :
O.C.D. Hypocondria Depression Anxiety Panic Attacks Severe Dehydration Nothing
Posted by InADaze (Member # 7711) on :
Jumper's knee Seasonal Allergies Calcium deposits in ear canal Gastritis GERD Migraine Motion Sickness Sinus Infection Orthostatic Hypotension Anemia Ovarian cysts
Posted by lpkayak (Member # 5230) on :
ok-you got your 5
are you using graph paper to sort this out???
ps i just added one...sorry
Posted by Tincup (Member # 5829) on :
I am so grateful you all have taken time to do this survey. Thank you so much for spending your time making this come to be!
I will cut it off here... make a final count (including emails).. then start sorting the last 2 pages into categories.
BTW- Good news! The proposal (idea) for this article has been approved. It already was actually... but I gave them the topic titles this time... and they were happy with them.
There will be 4 articles (with possibility to continue doing more if I want- yippee)... and 2 were submitted already and will be published soon... so the third article- this one- will hopefully show people what the heck is going on out there.
The 4th article will be on our precious children with Lyme and tick borne diseases.
Without your help here and the other posts.... we couldn't get the word out there to folks who need to know.
Again... THANK YOU!!!!!
You make me smile!
Posted by lea (Member # 15593) on :
1. complicated migraine
2. anxiety/depression
3. stress
4. "all in your head"
5. flu (a flu that lasts 3 months?)
6. evaluated for MS (MRI's, Cat Scans, evoked potentials, nerve conduction studies)
Posted by LoneDove (Member # 16516) on :
Tincup
I know you cut this off but one thing that really stands out & went thru with an endo that set my teeth on edge - he gave me powerful brain drugs (samples) for depression! after seeing off the chart antibodies and previous ebv...so he gives me some depression meds..can't remember what they were - I tossed them in garbage.
Two other drs dx'd hashimoto's & lupus which I may have prior to zee tick bite/bulls eye rash.
Posted by Peedie (Member # 15355) on :
Tin cup - well now that we are officially Lyme:
My daughter, now 24 Exposed by many ticks when camping with our horses in Anza, CA. 12 years ago.
Taken to Fountain Valley Hospital ER when a bite wound with inflammed and angry bruise appeared.
ER MD Dx'd as infected hair folicle even though he could not elicit any infection. 14
Knee pain - thought were growing pains? xray normal at 14-15
Spinal menegitis at 17 -spinal tap leaked - a painful trip to ER for blood patch application.
Mono shortly after Headaches and Migraines for years, also prone to urinary infections.
Referred to Neurologist and Rhuematologist
Dx as Lupus by Neuro when all over body pain was unbearable - put on Prednisone (steroid)pain got worse, could hardly walk and laying down hurt.
Hands were swollen, especially in the finger joints.
Cysts and benign tumor developed on Thyroid - Lobectomy 19
Tonsils out - ulcerated, infected and bleeding 22
Still in all over pain - DX as Fibromyalgia at 21 or 22 (can't remember) no meds helped.
Always pain and digestive problems.
TMJ
Knees still hurt, back and shoulders also, sleeping problems, depression over sickness.
Got Dx'd when mom discovered she had Lyme.
Tested strong positive for Lyme by Igenix this month.
Mom (me) Health problems over the years I attributed to sports mostly.
Back and neck problems, problem knees xrays neg. flu in the middle of summer?
Things I just put up with - then last August I had a strange rash on my back - then my chest but doctor didn't think was shingles - no Dx.
Then both legs had pain escalating to unbearable and neuropathy in both legs.
Then in pelvis/groin area.
No reflex in left leg.
Asked PCP if it could be Lyme as I researched my symptoms in the computer and kept seeing Lyme.
She said "no - there is no Lyme in So. California. We have a different kind of tick."
PCP referred to Neuro. MRI of lower back showed nothing unusual for 55 year old. No spinal stenosis.
Asked for a WB test and got one (the short version) which showed positive bands but read as a negitive test (printed at top of page).
Neuro Dx'd as Fibromyalgia even though she said "not typical fibro" Wanted to just treat with Lyrica.
Had a new WB done with Igenix. Still negative result:
41+ 58+ 23-25 IND 34 IND for IGM 41++ and 31 IND 39 IND on IGG
Saw LLMD and Dx Lyme.
Twelve Years of visits to various doctors - especially for my daughter.
NO ONE asked a simple question. "Is there any chance you were bitten by a tick?"
Wishing Best of Health to ALL Peedie
[ 27. July 2008, 03:06 AM: Message edited by: Peedie ]
Posted by hokie (Member # 14720) on :
pudendal nerve entrapment
"myofascial-like pain syndrome"
"fibromyalgia-like syndrome"
mono
conjunctivitis
lymphadenopathy
Posted by Peedie (Member # 15355) on :
I would like to add a little something. A special Thank you to "Laura" who posts here sometimes.
When I was waiting for results for the MRI done on the small of my back. The neuro Rx'd Neurontin for me to take for pain and neuropathy.
At first it seemed to be a miracle drug. The neuropathy subsided. But then I started having side effects.
The Neurologist said Neurontin was safe and had no side effects.
I went to the internet and researched Neurontin and found a useful site: "ask a patient.com"
You can search any drug here and patients rate it and talk about it.
I described my original symptoms and asked if anyone out there knew what was wrong with me.
I heard for the first time - in a email from a perfect stranger:
"Could you have been bitten by a tick?" Laura suggested I get tested for Lyme and I told her my doctor said we don't have Lyme where I live.
Gently, she guided me to the ILADs and Calif. Lyme websites and here, where I learned we do have Lyme in So. Calif.
So - I thank Laura - if you are out there - for helping me and my daughter.
Blessings, Peedie
Posted by bettyg (Member # 6147) on :
tincup,
never saw your final note saying you got 100 since your subject line shows you still NEED MORE!
good deal; writing 4 articles!! fantastic... Posted by bejoy (Member # 11129) on :
Have you yet gotten:
Pregnancy!
Yes, people often get backaches, nausea, and fatigue when pregnant. (Don't be such a baby about it.)
No, you really don't understand. This is excruciating. There's something really wrong here.
There is nothing wrong with you at all. You are the picture of perfect health.
Posted by Dan's Mom (Member # 11347) on :
Son: diagnosed & treated (30 days each time) for Lyme at age 13 and again at 14
Seizures started at 15 DX: Epilepsy
At 21 Psychotic episodes that rolled into seizures DX: Pseudoseizures
At 22 LLMD DX: Lyme, Bartonella, Babesiosis
He is now almost 24 and has been on abx for 18 mos. and is much improved.
Posted by Hoosiers51 (Member # 15759) on :
I was diagnosed with something called "Over-Exertion Fatigue" because I got severely ill suddenly after participating in intense sporting events.
Sounds like a pretty lame diagnosis to me, but honestly, the doctor was trying his best and doing a lot of research on my behalf. He was very apologetic and admitted he didn't know, so at least he wasn't a know-it-all.
Another weird diagnosis I got was after a strange reaction to Effexor, I was diagnosed as having an "Atypical Panic Attack." This reminds me of the "pseudoseizures" listed above. It's not a typical X or Y, but at least it LOOKS like one, huh doc?
But then again, I guess "Post Lyme Syndrome" also "looks" like Lyme!
Posted by lymer (Member # 16352) on :
Generalized Anxiety Disorder IBS Scarlet Fever
Posted by LittleLymie19 (Member # 15610) on :
Superior Mesentric Artery Syndrom (SMA) "IBS-C" Crohn's Disease and "IBD" Costochondritis Asthma Anxiety/Depression
Posted by mjo (Member # 7876) on :
gout carpal tunnel syndrome (sudden onset) hypochondria (I think) Hepatitis C Hepatitis B Does this count? From the doctor at the Student Health Service--"Ah, I don't know what you have but it's definitely something. Your symptoms are sort of like mono but your bloodwork is the opposite of mono. Come back so we can draw more blood to check." The blood checks went on for weeks and weeks until my then-beau said, "Don't you realize they're experimenting on you--your blood? Maybe you'd get better if they stopped sucking all your blood!" (I stopped giving blood every few days and I did get better! The fatigue and pounding head went away. Babs? Lyme? This was 1975-76 at the University of Minnesota.)
Posted by KirstenS (Member # 15146) on :
At age 10, possible juvenile rheumatoid arthritis. Knee problems at at 12, was told by the specialist that it was from growing and that your knees haven't fused together just yet.
Mono at 17, which took me longer than most to get over. Raynoids by 19. Boarder line lyme by 22 and treat for a month.
After a month told I had fibro. From 22 to 33 the headaches and illnesses got worse. 33 treated for Fibro.
Finally by 39 treat properly for lyme
Posted by KirstenS (Member # 15146) on :
Sorry I forgot, migraines and vascular headaches. IBS, Bladder infections, yeast infections, digestive problems, gastritis.
Posted by AmyPW8 (Member # 11504) on :
I was diagnosed with MS. I never saw a psych. but at that time I could have easily been diagnosed with mental illness. I like to call it my "early, squirrelly Lyme daze". Every pun intended.
Posted by hiker53 (Member # 6046) on :
Meniere's disease idiopathic myoclonus (translation "we dont know at Mayo clinic why you jerk and fall down) Celiac Disease Cancer with primary source unknown Jacob-C's disease depression tumor in ear
Posted by Ann in CA (Member # 97) on :
sinus infection bronchitis (repeatedly) pleurisy (repeatedly) tennis elbow costrochondritis frozen shoulder (both shoulders, different times) arthritis (L knee replacement recommended)(Mostly OK now) arthritis of both hips (fine now) Iritis of L eye Stress there are more..., can't remember them all,it took 6 years to get my doc to admit I had lyme. I knew.
Posted by janis1023 (Member # 15942) on :
Also, flat feet, root canals, mercury fillings, past life problems, secondary gains, scar tissue (from unnecessary surgeries), etc. etc. etc.
Marla
Posted by Angelica (Member # 15601) on :
"A chronic persistent cold"
Posted by Tick Tock (Member # 15948) on :
You probably have enough, but here are some more for my 17 year old daughter:
Von Willenbrann's Disease (blot clot disorder-not genetic) Poor parenting (my favorite!) Over involved parents (Who wouldn't be with this list of diagnoses) Orthostasis Eating Disorders NOS Possible bi-polar Severely mentally ill Depression Anxiety Panic Attacks Flat Feet Suicide attempt Personality change: Rage, oppositional behavior, impulsivity, promiscuity, attention seeking behavior Dizziness Insomnia Fatigue Sweats Drug abuse Conjunctivitis costochronditis ADD Stretch marks Allergies Cough - unknown origin. headaches Weak ankles, knees, weak core muscles Too much field hockey and sports Growing pains Malnutrition Laziness Poor communication (really! A diagnosis!)
Posted by TF (Member # 14183) on :
Innatentive ADD symptoms....spacy and cannot concentrate at certain times...in certain situations...not all the time. Not hyperactive. In a usually bright kid...not a challenged kid. This says that something else is causing this.
![[Big Grin]](biggrin.gif)
![[rant]](graemlins/rant.gif)
![[Mad]](mad.gif)
![[Roll Eyes]](rolleyes.gif)
![[dizzy]](graemlins/dizzy.gif)
![[loco]](graemlins/loco.gif)
![[toilet]](graemlins/toilet.gif)
![[shake]](graemlins/shake.gif)
![[puke]](graemlins/puke.gif)
![[bonk]](graemlins/bonk.gif)
)
![[woohoo]](graemlins/woohoo.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Wink]](wink.gif)
Then possible MS. DLL
![[Eek!]](eek.gif)
![[confused]](graemlins/confused.gif)
I've never been depressed.
![[Frown]](frown.gif)
![[Razz]](tongue.gif)
![[hi]](graemlins/hi.gif)
![[bow]](graemlins/bow.gif)