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!
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
Gout, Bursitis....
Posts: 2804 | From Texas | Registered: Oct 2000
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Alv
Unregistered
posted
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 ...
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
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.
-------------------- If you think it you can achieve it; if you dream it you can become it! Posts: 22 | From Germantown, Maryland | Registered: Apr 2008
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posted
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?
-------------------- If you think it you can achieve it; if you dream it you can become it! Posts: 22 | From Germantown, Maryland | Registered: Apr 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
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
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
OOPS forgot
Stress
told that stress could give me everything but a baby!
Posts: 3975 | From usa | Registered: Aug 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
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.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
...at 26 years old.. all in my head....and depression...
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
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.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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adamm
Unregistered
posted
Nothing...it was all in my head.
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Dawnee
Unregistered
posted
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
posted
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.......
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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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.
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bettyg
Unregistered
posted
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!!
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
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
Posts: 7052 | From Colorado | Registered: Mar 2003
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
CFS and fibromyalgia
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
"myofascial pain syndrome," "pudendal neuropathy," "fibromyalgia-like syndrome," mono, "muscle imbalance causing nerve like pain"
Posts: 129 | From Virginia | Registered: Feb 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
-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).
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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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.)
Posts: 52 | From Atlanta, Ga | Registered: Jun 2007
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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
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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
Posts: 488 | From NY | Registered: Oct 2004
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Post traumatic Stress Disorder.
Fibromyalgia.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
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!
posted
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.
posted
"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?
Posts: 514 | From . | Registered: Apr 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
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!!!
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
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.....
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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-------------------- Its not easy bein green... Posts: 11 | From Tickville | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
'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 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
Non-specific inflammatory arthritis Candidiasis Generalized anxiety disorder Depression Chronic fatigue syndrome
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
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
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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bettyg
Unregistered
posted
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!!
IP: Logged |
-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!
Posts: 46 | From Texas | Registered: Apr 2008
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posted
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..
Posts: 248 | From Tejas | Registered: Jun 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Asthma Depression Fibromyalgia And according to my family, just lazy!
posted
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!
Posts: 46 | From Texas | Registered: Apr 2008
| IP: Logged |
posted
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
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Then possible MS. DLL
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I've never been depressed.
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