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» LymeNet Flash » Questions and Discussion » Medical Questions » Prior to Lyme- what other diseases- Need 100 answers- FIVE more to go! (Page 1)

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Author Topic: Prior to Lyme- what other diseases- Need 100 answers- FIVE more to go!
Tincup
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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.

[Big Grin]

[ 22. June 2008, 02:27 PM: Message edited by: Tincup ]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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tdtid
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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

--------------------
"To Dream The Impossible Dream" Man of La Mancha

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Allie
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Mine were anxiety and allergies.
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Tincup
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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!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sixgoofykids
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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

--------------------
sixgoofykids.blogspot.com

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painted turtle
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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. [rant]

--------------------
www.lymefire.blogspot.com

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Larkspur
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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!

--------------------
"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

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charlie
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Gout, Bursitis....
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Alv
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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 ]

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Tincup
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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!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Blymey
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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!

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Blymey
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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!

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feelfit
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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

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feelfit
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OOPS forgot

Stress


told that stress could give me everything but a baby!

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cactus
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Fibromyalgia
Chronic Fatigue Syndrome
Myofacial Pain Syndrome
Migraines
Plantar Fascitis
Carpal Tunnel
MS
IBS
Endometriosis
Mitral Valve Prolapse (syndrome?)
Mono
"Mono-like illness"
Tortocolis (spelling, sorry)
Costochondritis

Oh man, I can't stop...

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

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jkmom
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For my daughter:

migraines
anxiety
depression
mood disorder-nos
intermittent explosive disorder
psychosomatic

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webmeg
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anxiety
suggested fibromyalgia, chronic fatigue

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mtree
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...at 26 years old..
all in my head....and depression...

[Mad] [Roll Eyes] [dizzy] [loco] [toilet]

--------------------
worrying about tomorrow takes its strength away from today

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cantgiveupyet
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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.

Interstitial cystitis
vulvodynia
pelvic floor dysfuction

[ 17. June 2008, 11:24 PM: Message edited by: cantgiveupyet ]

--------------------
"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

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adamm
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Nothing...it was all in my head.
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Dawnee
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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 ]

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Lymetoo
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IBS
migraines
sinus infections
Fibromyalgia
Endometriosis
fibroid tumors
anemia
Mitral Valve Prolapse
Mono
Interstitial Cystitis
Depression

Gee, how did I get depressed?? [Roll Eyes]

Dawnee.. YES, the Lyme caused the female problems!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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ICEiam
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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

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tailz
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Early on (in my 20's)...

depression
anxiety
OCD

A little later (in my early to mid 30's)...

acid reflux
irritable bowel syndrome
allergies

Later (in my late 30's)...

endometriosis
PCOS
chronic fatigue syndrome
fibromyalgia
rheumatoid arthritis
asthma

Terminal stage...

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
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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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soonermom
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Hemiplegic Migraine
possible MS
susac's syndrome

--------------------
3/08 CDC Positive
IgM 18++ 23-25IND 31++++ 34++ 39+ 41+++ 58+ 83-93+

CDC Negative
IgG 31IND 39IND 41+++ 58+ 66+

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Melanie Reber
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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

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joalo
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CFS and fibromyalgia

--------------------
Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006.

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hokie
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"myofascial pain syndrome," "pudendal neuropathy," "fibromyalgia-like syndrome," mono, "muscle imbalance causing nerve like pain"
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disturbedme
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-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

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moosejive
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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

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cameronb
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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.)

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mazou
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Working backwards, regarding my derealization for 15+ yrs:

Chronic Fatigue
"I think it's food"
"Have you tried hypnosis"
ADD
depression/anxiety

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TS96
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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 ]

--------------------
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.

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Tincup
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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!!!!!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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wantabe
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-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

--------------------
Lyme+ dx Dec.07
Currently: Levaquin,Cefdinir,Plaquinil,Fluconazole
Nystatin,B12 meth, nortriptyline
Ambien,Clonazepam,many supplements
Dairy, sugar, gluten free diet
infrared sauna and exercise

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Lily
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possible virus
possible Lupus (sero-negative)
possible lymphoma
Still's Disease
Rheumatic fever

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seibertneurolyme
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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

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Bobidor
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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!)

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fatigued15
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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

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Geneal
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Post traumatic Stress Disorder. [shake]

Fibromyalgia.


Hugs,

Geneal

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NanaDubo
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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"

[puke]

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AZURE WISH
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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 [bonk] )

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

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Wimenin
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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...

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Peacesoul
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CFS
Lupus
Migrains
Anxiety/panic disorder
TMJ
Strep throat

(my tests showed anemia, postitive ANA (had + ANA for over 14 yrs), blood in my urine with no known causes, thyroid profile 3.5)

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dmc
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migraines
Multiple Sclerosis

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Peacesoul
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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.

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DakotasMom01
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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 ]

--------------------
Take Care,
DakotasMom01

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Wimenin
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"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?

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lou4656
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Gerd
Tension headaches
TIA/Seizures
Migraines
Fibromyalgia
Anxiety/Depression
Somatization Disorder

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

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AZURE WISH
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YAY!! [woohoo]

congrats on being symptom free Lou [Smile]

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

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bettyg
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lou, CONGRATS; SO HAPPY TO READ THIS!!!! [group hug] [kiss]
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seibertneurolyme
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Need to add

conversion disorder

Bea Seibert

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dontlikeliver
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CFS and Fibro, of course [Wink] Then possible MS. DLL
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UnexpectedIlls
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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"

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herxuk
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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 !!!!

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IMHisda
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Chronic fatigue/Fibromyalgia Syndrom
Carpel Tunnel Syndrome

--------------------
RV

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Tracy9
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Somatization Disorder

Arthritis

Allergic reaction (EM)

Chronic Fatigue Syndrome

Fibromyalgia

Post Lyme Syndrome

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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flintykindofwoman
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DEPRESSION!!

RESTLESS LEG SYNDROME!!!

NNB (NEED A NEW BOYFRIEND)!!!

--------------------
Its not easy bein green...

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Keebler
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-

'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 ]

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Tincup
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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!!!!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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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!!!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Blackstone
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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.

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1rosepedal
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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. [Eek!]

Funny thing here is the neighbor's dog tested positive and is being treated for Lyme.
[loco]

I don't understand. [confused] I've never been depressed.

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ticked-offinNc
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all in my head

Fibro
tendonitis
pre-cancer cervical
alzheimers
ms
migranes
pms
just menopause

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Dancer
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Non-specific inflammatory arthritis
Candidiasis
Generalized anxiety disorder
Depression
Chronic fatigue syndrome

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Tincup
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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.

THANKS again and again and again!

[Big Grin]

[email protected]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Larkspur
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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

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bettyg
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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.... [Smile]


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!!

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kgaTX
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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)

countless times I was tested for:

-Lupus
-MS
-various cancers
-STD's
-ovarian cysts, hernias, ulcers


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!

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LaurenTurner
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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. [Roll Eyes]

I gave him the benefit of the doubt (because I was desperate) and took acid reflux meds. It didn't do a thing..

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Vermont_Lymie
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Asthma
Depression
Fibromyalgia
And according to my family, just lazy!

[Frown]

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kgaTX
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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!

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mikej2323
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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

Currently paralyzed, unable to speak or swallow.

Mike
[email protected]

www.caringbridge.com/visit/angelsforalex

Posts: 252 | From Iowa | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator
Salty Sue
Junior Member
Member # 11929

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Fibromyaliga
osteo arthritis
hypoglycemia
hypothyroidism
chronic fatigue syndrome
possible SLE Lupus
hypochondriac

Hope that helps!

--------------------
Get our free Lyme Aware poster by writing [email protected]

Posts: 8 | From British Columbia, Canada | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
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