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» LymeNet Flash » Questions and Discussion » Medical Questions » Useless tests you've had in the past- before Lyme diagnosis

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Author Topic: Useless tests you've had in the past- before Lyme diagnosis
Tincup
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I know I am pushing my luck.

You all have responded so well to my inquiry to misdiagnosis... I'd also like to know what tests you've had done before Lyme was diagnosed.

If you are like I was way back when... you spent much of your mobile time at or in hospitals doing every kind of miserable test known to man... and NOTHING showed anything!

Thanks for helping!!!

[Big Grin]

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

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tdtid
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This will be tough to remember, but here I go....
(Lots of these were done multiple times since you never know if you might get a new result you know.

Heart Catherization

Stress Test

Bone Scans

Multiple M.R.I.'s and CAT scans

lots of scans for the Pheo's with radioactive markers

Lots of lab work for lupus,
R.A., Elisa tests THREE TIMES [Smile] , blood counts over and over

Upper G.I. for GERD and also some test you drink something and they dump you upside down and tell you to burp.

E.E.G.

Again, I'm sure I had many more and would have to dig out my records, but this is a start of what comes to mind the fastest.

Cathy

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

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adamm
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Arboviruses/ Flaviviruses , ANA, a clean MRI, of course all the Quest

TBI tests,

Rheumatoid Factor, Sed Rate, C Reactive Protein, Hemoglobin

(ID told me a normal result would rule out Babs [Roll Eyes] ),

and a host of others I'm sure

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cantgiveupyet
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gosh so many ER visits i will try to recall it all.

MRI of cervical spine
MRA of head to rule out Pineal cyst was pushing on nerves

EMG
EEG
EKG
Cat scan of abdomen and kidneys to rule out apendicitis, with barium and injectable.

Cat scan of kidneys

Ultra sound of pelvis looking for fibroids
MRI of pelvis

CBC
CMP
Liver panel
Allergy panel
lupus
ANA
Sjrones
sceloderma(spelling)
RA
Diabetes- about 5 times this was done
Thyroid testing
Pregnancy test-at each ER visit, some blood some urine
Eye exam to figure out photophobia so all the tests that go with that

Quest WB ordered by neurologist and my PCP almost refused to run it. He did, and they only ran IGG.
Hepatitis,
HIV- done twice
EBV
urinalysis

Hydrodestention and cystoscopy of bladder


I had dr disagreeing so much one neurosurgeon threw down my file and said i was too young to be suffering like this!!! He said i dont know why a MRI of your neck was done, you do NOT have occular migraines and your neck is not causing this!!.

--------------------
"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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Dawnee
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3 MRIs (brain, Cervical, then whole spine)
1 CT scan
1 EEG
2 EKGs
1 Echocardiogram
1 EMG
2 Allergy panels
1 ENG (and about four other hearing and vertigo tests ran by my ENT doc)

countless blood draws
a handful of ER trips and several visits to different doctors

My heart specialist wanted to do some sort of catheter into my heart through a leg vein but I drew the line there..

(this is all in the last 6 months before I got dx'd in May except for one of the EKGs)

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jamescase20
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Being insured only part of the time, I went from ear infections, very very bad ance, boils, um, flus, ammoinoa, mono, depression... then I got fired for calling everyday with air hunger. So I went on for 6 more bitter yrs alone.
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Bobidor
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24-hour Holter
Echocardiograph
ECG
EEG
Brain scan
Thyroid echography
Sinus x-rays
Spine x-rays
Breathing capacity
Hearing capacity
Allergy pannel
Provoked hyperglycemia (5 hours)
Tons and tons of blood tests

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bettyg
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mentioning only things not mentioned above:


4 skin biopsies; 2 showed "UNKNOWN BUG BITE"!!

2 tests going down throat checking on things; found SUSPICOUS thing; repeated in 6 months ... still there.


during colon polyp/appendix surgery, i had surgeon check this problem out ... FATTY TISSUE!!!! good grief!


xrays showing paralyzed vocal cord; they didn't have me standing correctly and also showed ENLARGED HEART!

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lymebytes
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After "lyme exploded" in me ...

Many CBC's and other blood tests including 2 lyme blood tests, WNV, HIV, syphilis blood tests, full body CAT scan (neck to pelvis), MRI of entire spine (neck to lumbar) - Ab ultrasound - kidney ultra sound -EKG - xrays of back and chest - treadmill stress test - examination by cardiologist - thorough examination by neurologist, reflexes, eyes, gait, etc., etc.

Years prior when symptoms were just starting one at a time - Brain MRI - shoulder MRI -elbow MRI -neck MRI - these tests were in the preceding 2-10 years leading up to what I call the "lyme explosion".

Saw 12 Md's in all. My husband and son also have lyme ...between the 3 of us we saw nearly 40 Md's and we were all tested for everything under the sun. My husband had lumbar puncture so did my son, brain scans, ab MRI's, bone scans, ultra sounds - I could go on all day.

We all had onsets at differnt times, my son 1997, my husband 2003, and then me 2006...I was the first to be correctly diagnosed in 2006, at which time finally my son and husband were diagnosed correctly too.

Several of these tests were repeated more than once! I am sure I have forgotten quite a few.

--------------------
www.truthaboutlymedisease.com

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tad
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The most useless test I had - evoked potentials. Nothing like being zapped with electricity. [Frown]
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Nessa1815
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Not diagnosed yet. However.....

Fibro
CFS
Bloodwork out the wazoo
MRIS


Crap, I know there's more but brain fog is here. (and getting worse, btw.)

--------------------
"~*~My smile hides my bite~*~."

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hurtingramma
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Maybe I missed it, but I haven't seen anybody mention Evoked Potentials. I had MRI's up the wazoo, blood work galore, saw 3 different neuros, 1 rheumy, my PCP....They tried so hard to prove I had MS, but gave up and blamed everything on FM.

Finally saw an LLMD, who disgnosed LD

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

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Dawnee
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Yep... I forgot:

Evoked Potential
24 hr holter monitor
30 days looping holter monitor
A sleep Study
That thing where they put lidocane down your nose and then put a scope through your nose and down your throat (hurt like a *$^#(&*^) that showed I have permanent scarring/damage to larynx and vocal cords

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Tincup
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HOLY TOLEDO!

I thought I was just an unlucky one who was poked and prodded like this years ago! I thought things had to be better by now!

Looks like they aren't! So sorry!!!

And this makes me totally NUTS to see what is going on.

Thank you all for taking time to figure this out.. and for sharing it.

And I thought I was "rough" on the ducks. NOT!!!!!

GEEZE!!!!

[Eek!]

OK.. I have a BIG favor to ask... IF anyone is interested.

I am working still on the post where folks are listing their misdiagnosis. It is getting overwhelming but I am sort of keeping up.

I also have to eventually look at the post about children.. which my heart just can't do at the moment... but I will get to it.

To use this information I need it broken down into a simple list of tests with accurate names and spellings.

I know some folks have had the same tests as others... and some will not have.

Once we get a finished list for all three posts... we can make them individual posts for easy reference for others.

I still need these posts to make the list and to use the comments... but a final list I think would be very helpful.

Anyone interested in making it?

If not.. I will.... but it would be VERY helpful to me and others.

Thanks for posting here and considering this project.

[Big Grin]

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

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Geneal
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Hmmmmm. I won't call a nuclear stress test completely useless.

Other tests include:

Pulmonary Function Tests

Doppler Echocardiogram

Tests (blood) for everything including parvo virus, lupus, malaria, etc.

Nuclear scan of my lungs to rule out pulmonary embolism. [shake]

X-rays of my entire body.

There are many, many more. These are all I can remember at the moment. [dizzy]

Hugs,

Geneal

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Alv
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Echocardiograph -usa
ECG-usa
EEG-usa
Brain scan 2 times , cat scan 2 times , MRI with color once USA
TEST FOR MIGRAN( can not recall) GERMANY
Breathing capacity once in europe
Hearing capacity ( 3 times lost high pitches) usa
Allergy pannel and mold panel in germany
Tons and tons of blood tests also ...my entire life.
Kidney test USA and GERMANY
colonoscopy , endoscopy-USA
strept test for cronic TONSILLITIS -GERMANY
X rays -in my right knee when swollen -draw fluid from knee when in pain -germany (clueless)
X-rays for my chest -USA
Checking for TBC -suspitous..could not breath -USA

2 ELISAS ( when LYME ACTIVE -came negative ) and another on ER -WHEN INSISTED I HAVE LYME -USA

GERD -test -USA

Ultrasound for PELVIS pain -USA

LUPUS-usa

RA test -usa
Scaner for my liver( granulomas( spelling ) from BART -they called it HEMANGIOMAS)

Thyroid test -usa
AIDS-EUROPE
HIV-EUROPE( they were clueless)
Viruses -both
SKIN biopsy ( mollars changed color they thought is skin cancer ) was bart mollars.
THEY ALL were buffered and could not exsplain my MYSTERIOUS DISEASE.

LYME and all coinfections -ALL OF THEM AND VIRUSES.


HAVE seen the best doctors in Eastern EUROPE and in NORDHEIM WESTFALIA GERMANY and HERE in USA.NONE of them diagnosed me.I diagnosed myself.

IF I say 50 doctors I WOULD LIE!

HAVE BEEN MORE..in diferent or better say in all areas...for each organ,from head to toe....

Only when I saw the LLMD I linked all the dots..the rest of doctors are really clueless..what this disease can cause.

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lou4656
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Hey -- Soon-to-be Granny TC!

Are you looking for a listing of all of the tests mentioned in the posts, and a total of how many people had each test? Or do you just want a listing of the tests?

I'll try to help with that. I'm just not sure exactly the information that you need.

My list:
EEG
MRI
CT scans
Nuclear Stress test
Neuropsychological exam
Sonograms

The #1 most worthless tests are:
Elisa and Western Blot from Quest! [Big Grin]

--------------------
LouLou

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Tincup
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Loulou!!! Good for you!

Thanks for offering! I have trouble organizing and making lists... and I am sure it will be complicated for a "normal" person but it just about sinks me under to try to do. So much appreciated your offer is!

I would like to get a nice list of the different tests. Duplicates should only be listed once... not each time.

I would also LOVE to have an "average" ... but nearer to the end of this... as to how many patients total... and how many tests on average they have had.

I hope that makes sense?

Hopefully we can get at least 25 patients to list their tests... so we can get a good sampling.

If you could do this... you'd be making me MIGHTY happy!!!

I KNEW I shouldn't have offered to do a "series" of articles... but the opportunity came up unexpectedly... and they wanted them... so I couldn't really waste the opportunity to get the word out there.

Plus.. this information will be shared with others so it hopefully can be used more than once.

So, if you can... I would love the help!

TANKS BERRY MUSH!!!!

[Big Grin]

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

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Tincup
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And thank you to all who respond. Without you... this would not happen!

[Big Grin]

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

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lou4656
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Happy to do it, TC.

I've been doing the summary in the Hikers/Walkers group, so I am getting used to going through the posts and drawing the information that I need from them.

I'll get started on it now. (Luckily it is a slow day at work . . . so yes . . . I am doing this on company time. SSHHHHH!!)

Do you want me to post it here . . . or send it to your e-mail?

I will do the list up to this point and then I can update it as new posts come in.

How's that for a plan, Granny-to-be!

--------------------
LouLou

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Tincup
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Hey kind loulou...

You can email me with results... but if you can keep the list till we have at least 20 responses.. and just send the final... that would help MY brain very much!

I am horrible with numbers... no secret... and get confused.. so don't want to make mistakes.

THANKS again!!!

[Big Grin]

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

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dbourne
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rumetoid arthritis (sorry about spelling)
hand scans to figure out joint pain
EKG
lupus

*both tests were done multiple times because symptoms would not go away. I had already been treated for lyme with a 30 day antibiotic.

It wasn't until later that I found Lymenet and an LLMD to explain it all.

One I found one he also did a brain MRI.

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Sojourner
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How about the USELESS labcorp lyme tests (on blood and CSF) that the ducks used soley to rule out lyme disease in my husband.

And all the other non-specific tests that are used to dx MS! [Mad] but which the same results can occur with lyme. [cussing] [cussing] [cussing]
This makes me mad...can anyone tell?

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mtree
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Before diagnosis

Ekg
Eeg
ecocardiograms
Mri..brain
Mri.. spine
Spinal tap
Ultrasounds
Colonoscopy
Endoscopy
Exploratory surgery
Nuclear stress test
Heart holter monitor
Catscan
x-rays
Numerous blood tests

I'm sure there was a phyc test in there somewhere..... [loco]

[dizzy] mtree

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

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lou4656
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Up for more -- I am holding the results for TC until we have at least 20 responses.

Thanks!

--------------------
LouLou

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lou4656
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up

--------------------
LouLou

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Keebler
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-

Just one example of many:


Severely anemic. Off the charts low. Repeatedly.

Falls. Seizures. Fatigue, Severe sensitivity to all stimuli, etc., etc.


Doctor ordered an upper and lower G. I. BARIUM x-ray to find a source of internal bleeding. None found.


Two more years of severe anemia and many other symptoms before finding a new doctor who knew more.

Western Blot positives for Borrelia, HME (an erhlichia) and BABESIA -

Babesia can cause severe anemia.

Also diagnosed with elevated mercury. That certainly affects red blood cells.

-

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Tincup
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Just a few more to go- about 4-5 more people responding.

THANKS!!!

[Big Grin]

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

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UnexpectedIlls
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7 chest Xrays

4 Chest Ct Scans

MRI/MRA/MRV

2 Head Cat Scans

Abdominal Xray

Abdominal Ultrasound

Pelvic sonogram

3 Echocardiagrams

Stress Echo

Numerous EKG's

ANA (positive)

RF (positive)

Lupus

MS (MRI)

ACE (Sarcoidosis)

NUMEROUS blood tests

Urine tests

3 Lyme tests through Quest (Negative)

IgeneX WB (positive)

And MANY more I cannot remember, I have had so many tests

--------------------
"You'll be surprised to know how far you can go from the point you thought it was the end"

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lou4656
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It's your last chance to post about testing that you had before your lyme diagnosis.

I'm hoping to get time today to tally this up and send the results on to TC.

Thanks for your responses!

--------------------
LouLou

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KS
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Let's see if I can remember everything....

Abdominal CT (2)
Brain MRI (2)
Neck MRI
Abdominal ultrasound
cervical ultrasound
Throat/nose scope (2)
Chest X-ray (2)
EKG
Echocardio
Nerve Conduction Study
EMG
Upper Endoscopy (2)
Esoph. Manometry Study (UGH, awful)
Barium Swallow
Stomach Emptying Study (2)
HIDA Scan
ACTH Stimulation test (2)
Metyrapone Study
Spinal Tap
Probably 150 tubes of blood for endless bloodwork

I should be all set with skipping an 'annual physical' for awhile...

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duke77
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Brain MRI
Neck MRI
Stress echo
Nuclear stress test
gallbladder and liver ultrasound
Chest X-ray
EKG
Nerve Conduction Study thought it was ALS
Endoscopy
Liver panel
Allergy panel
ANA
Hepatitis
HIV
EBV
RPR
urinalysis
colonoscopy
RA
C-reative protein
Blood clotting test (fibrogen)
So many blood tests I think I could fill a swimming pool

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lymednva
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EEG (at age 12)

Multiple sinus x-rays (yes, I did STILL have infection!)

Allergy Testing (negative, btw)

Chest x-ray (yes, I did STILL have pneumonia!)

Bone marrow biopsy [Eek!]

Multiple ELISA's (all neg)

PCR for Lyme (neg)

Multiple cbc's

Thyroid panels

24 hour urine test

Female hormones test (no, I wasn't menopausal!)

Sure there were more, but all I can think of at the moment.

--------------------
Lymednva

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