Topic: Useless tests you've had in the past- before Lyme diagnosis
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
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 , 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 Posts: 2638 | From New Hampshire | Registered: Oct 2006
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adamm
Unregistered
posted
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 ),
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
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 Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Dawnee
Unregistered
posted
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
Unregistered
posted
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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posted
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
Posts: 209 | From Montreal, QC, CAN | Registered: Jan 2008
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bettyg
Unregistered
posted
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
Frequent Contributor (1K+ posts)
Member # 11830
posted
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.
posted
The most useless test I had - evoked potentials. Nothing like being zapped with electricity. Posts: 41 | From Singapore | Registered: Jan 2008
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posted
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
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
Honored Contributor (10K+ posts)
Member # 5829
posted
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!!!!
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.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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.
X-rays of my entire body.
There are many, many more. These are all I can remember at the moment.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Alv
Unregistered
posted
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
Frequent Contributor (1K+ posts)
Member # 10300
posted
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!
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
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 Posts: 1276 | From maryland | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
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! but which the same results can occur with lyme. This makes me mad...can anyone tell?
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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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.....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Up for more -- I am holding the results for TC until we have at least 20 responses.
Thanks!
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
up
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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.
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" Posts: 946 | From Massachusetts | Registered: Apr 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
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 Posts: 1276 | From maryland | Registered: Oct 2006
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posted
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
Posts: 649 | From United States | Registered: Dec 2003
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
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
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 Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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, blood counts over and over![[Roll Eyes]](rolleyes.gif)
), 
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but which the same results can occur with lyme. ![[cussing]](graemlins/cussing.gif)
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