randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I think being mis-diagnosed with RSD (reflex symphathetic dystrophy) and having to go through 13 lumbar blocks is bad.
Then they diagnosed me with arthritis and asthma and kept me on steroids for years........
Ok, bad enough....
What have you been mis-diagnosed with and what bad medicines have you been on????
Makes me wonder what all those bad meds are going to do?????????
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hmmm lets see.
when i was having wierd head pressure and strange sensations, i got the ocular migraine diagnosis. Dr gave me some migraine med from his closet of drugs. (never took it)
Anxiety- same dr asked me if i thought i had this, went to his closet of drugs and gave me Lexapro- researched online and didnt like the side affects, plus couldnt swallow pills at that time.
Hormone problems- 1 dr said see gyno other said see endo...endo thought i was nutzo
Inner ear infection- given steroid for inflamation in nose. I think this helped to set off all my symptoms of lyme.
Neurologist- ran MRI of neck and found severely herniated disc, and almost had that operated on, but they couldnt gaurantee that it was causing all my symptoms.
Pineal cyst in brain- dr couldnt tell if it was pressing on nerves causing symptoms was told may have to have operation.
I must have had 100 blood draws and atleast 50 gyn cultures. Multiple urinalysis.
The only good diagnosis i have had by non LLMD is pelvic floor dysfunction and im now in PT for that, and the PT says it could be causing all my bladder pain or most of it. Im progressing slowly.
-------------------- "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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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
When I first got sick These are the things I was diagnosed with ages 10-12
- growing pains - faking - stress - its viral it will go away - It is all my fault I am sick
No meds given
this is why when I was 12 I had enough the best of the drs werent helping and the worst of them werent very nice
When I was 23 symptoms started getting much worse pain was spreading and fatigue getting bad started missing alot of school so I finally went back to the dr at 23
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I didn't get officially diagnosed because it was such a preposterous 'diagnosis', but when I first went to a DUCK and told him I"d been tick-bit, had gotten a red spot around the bite, and developed flu two weeks later followed by arthritic pains a month later , he first went on a rant about how everyone thinks they have Lyme (This was in New England, by the way), and then offhandedly said "well, it could be Lyme, or it could be leukemia, or AIDS". I think he determined the fact that I must have AIDS from the fact that I had tattoos and was thin (the 'thin' part was because I happened to be an athlete at the time)
-------------------- Symptom Free!!! Thank you all!!!!
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
We were told there was no Lyme in Tennessee. Hubby was DX with early onset Alzheimer's.......and given steroids until MRI and scans were to be done.
Duck said he could provide steroids, and memory enchancing drugs, but no ABX.
The steroids made hubby crash even further....
Dr. C had a cancellation and we were able to get an appointment a couple of weeks later. Thank God.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Where do I start? Multiple Sclerosis Fibromyalgia Mastoid bone (behind ear) infection Chondritis (spelled right?) Ocular Migranes tested multiple times for hepatitis, AIDS, Lymphoma...docs think there MUST be something wrong with her....but it's NOT lyme
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
Might I add to the above that Lyme is the ONLY thing I have tested positive for (with PCR test-1st time, etc.)
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Interesting misdiagnoses:
Mumps encephalitis A sore back because you are very tall Addison's Disease
And my favorite undiagnoses:
"That doesn't happen" (Interstitial Cystitis and chronic candida as a child)
"You don't have chronic lyme because lyme patients get very sick. You don't look like someone who is in pain."
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I didnt get the typical bulls eye rash. But I had huge hives on my legs for months. And I had a fever, stiff neck, heart palps... I was told it was from first Desert Valley Fever, and my first test came out positive but when the second one was negative I was told it was a black widow bite.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Weirdest treatment:
Emergency room doc put my hand in a cast, despite a negative x-ray. Real helpful for a gymnastics coach!
Four days later, the "fractures" were travelling to different joints, so I ripped off the cast, went to my favorite walk-in doc, and got a positive Western Blot.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
House Wive's Disease....I haven't found a definition in any of my medical texts...
I surmise that it's a disease known only to male doctors who think women are delicate or complaining beings who find misery in every day life when they should be grateful for their husbands' being alive...delight in their sheer presence as a remedy for this malady.
I left that doctor in the dust...telling him exactly what I thought of his diagnostic skills...
I wasn't properly dianosed for five years when I actuall found a tick on my belly, pulled it off, developed two huge EMs in 24 hours along with severe headaches, low blood pressure, eratic heart beats, paresthesias and neuralgias, and severe confusion...I passed out in an ID doc's office and he told me to call a cab to take me to the ER...
My parents' doctor, a friend of mine from high school, asked me what I thought it was, I said lyme, he said, OK, what do you want to do about it? I got 500mg of Doxy twice a day, herxed like a banshee for four weeks and felt much better...moved to California and relapsed...
began the run around all over again...I was consistently diagnosed as depressed and in need of lots of therapy...
Family doc back home sent me doxy until l could find someone here to help me...Thank God for that wonderful man...
That was 1999...I've had an LLMD since.
I still may be crazy, but it's my own personal brand of crazy, more like crazy like a fox!
Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey Randibear we had a local (moved to Chico) who had a diagnosis of RSD too!!! She was also the most neuro neuro Lymie I have ever ever met- and got better self-treating through animal abx from a feed store!!! She was great-!! Just wanted to chime in and let you know you're not the only RSD Lymie in the world!!!!!!!!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Vanilla
Unregistered
posted
I had so many I can not list them all but did get told to run out and get an AIDS test by my gastro duck at Kaiser.
My lovely sister I will refer to her as Ms. Supportive (not) told me I was just ready for a nervous breakdown. She is one of those types that feels better about herself if her younger sister is sick and having neuro problems. Isn't family nice? I think her boyfriend has Lyme and he is still walking around un-diagnosed after a bulls eye rash (his doctor told him there was no reason to test for Lyme) and he is adddicted to Paxal and can not get off the stuff. He teaches college but has to call in subs a lot because he often has trouble finding his car keys at home. I do not talk to my sister so I can not help diagnose her boy friend - I am not a doctor either - I just play one on T.V.
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posted
UBD: Underwire bra disease or costochondritis
I had severe chest wall pain. After a stress test, I was told by a University of Chicago cardiologist that costo was caused by a rib bruise from an underwire bra.
Nevermind the fact that I went braless 99.5% of the time. On the rare occasion when I wore a bra the underwire had been yanked out with pliers.
Fibromyalgia and chronic fatigue: TRIGGERED by Bb, EBV, candida, and chlamydia pneumonia. Hey, anyone would be EXHAUSTED and hurt all over if they were fighting off 4 infections with a substandard immune system.
Sarcoid: They suspected TB but finally decided it was sarcoidosis! I was hospitalized for 3 weeks in 3 different hospitals with encephalopathy.
I had an abnormal chest x-ray with spots in a milliary pattern in my lungs for over 5 years with no problems. They did a bronchoscopy to remove the sarcoid but completely overlooked the tick bite with a baseball sized EM rash on my leg. About 25 ducks looked at the bite but no one thought it meant anything.
Epilepsy: I was transferred to a larger teaching hospital on the day I was supposed to get an ELISA test for borrelia. I had developed aphagia and dysphagia episodes. My face kept going numb so I couldn't talk or swallow.
Because my EEG was slow the ducks decided it was a form of epilepsy and started me on Depakote. After a few weeks on that med I didnt' know if I was an animal, vegetable or a mineral.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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posted
My 14 year old daughter was given RSD as diagnosis after 2 months of a sprained ankle not healing. They didn't bother to test her for anything -not one blood test at all- even though I ttold all the MDs that we had been camping and an engorged tick fell out of her head, and we took 30 ticks off our dog. Af ter 16 doctors - I finally ordered igenex kit and found osteo to sign for blod draw-then 3 labs refused to draw blood because it was kit. Once she was finally tested-guess what- Public Health Dept called me to tell me she was positive.!!! Thank God for this website and CALDA and caring people like you all to give me good avice. My daughter-now just 15 years old, is finally getting good care and responding to treatment slowly. Thank you everyone!!
Posts: 75 | From San Diego, CA | Registered: Feb 2007
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posted
hmmm... lets see where do i, start worst diagnosis has to be... 1. Addisons Disease 2. "Your Crazy"" 3. LOL... Endconologist told me go home by spring time you will feel fine. 4. Neurologist... You have the typical symptoms of MS, but we cant diagnosis it, act like your ok, and you will be ok. ............. .............
Posts: 217 | From Everywhere | Registered: Nov 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
I guess the worst thing that I diagnosed with was being -- OK --
posted
Cervical myelopathy in which I had a spinal fusion which re-triggered the rest of it.
Fibromyalgia-numerous times CFS Depression Myositis and my favorite.......Somatatization disorder
Posts: 340 | From Ohio | Registered: Oct 2005
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never tested nor talked to about the possibilities of Lyme.
Dermatologist said moles on my body look like Lupus! ?
so much for the medical community....and IDSA
Posts: 158 | From PA | Registered: Oct 2006
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WildCondor
Unregistered
posted
Too many to list..but the ones that stand out are West Nile Virus, full blown AIDS, and a brain tumor. All lies and all wrong, it was all Lyme, all along. hey I rhymed!
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posted
In college, my roommate took me to the ER and the doctor there told me I was drinking too much alcohol and that was why I was so tired all the time that I couldn't get out of bed.
Another ER visit, they took my bp lying down and standing up, determined I was dehydrated and gave me an IV, sent me home.
One doc told me it was the flu I had had six months ago still lingering.
My most recent duck told me it was Somatization Disorder, but did the blood work for me so I could get Lyme out of my head. It was a no-brainer for her because I took the IGeneX kit into the appt. with me. When I was Igg CDC positive, she told me I didn't have it, it was Somatization Disorder.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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We both live in Ohio. Maybe we saw the same doctor as we both got the same diagnosis "somatatization disorder" LOL!!! Mine was a jerk at the Cleveland Clinic. I was really angry about it at first. Now I just laugh about it.
Posts: 340 | From Ohio | Registered: Oct 2005
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Treatment given - lithium, depakote, benzos, topamax, celexa, paxil, effexor, etc etc etc (the list is a mile long).
And still the bipolar disorder is on my chart for all time.
Here's a question - naive question - why do doctors have so much faith in psychiatric diagnoses but not Lyme disease diagnoses? Both are CLINICAL diagnosis. There sure isn't a reliable test to diagnosed bipolar disorder (or any psych disorder) and yet they totally believe the diagnosis!
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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One doctor actually told me I needed a boyfriend...so I guess my diagnosis was...lackoboyfriendiosis?
Posts: 3 | From Pennsylvania | Registered: May 2007
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posted
PS>...maybe it was because my with my terrible case of RLS no one could stand to lay in bed next to me
Posts: 3 | From Pennsylvania | Registered: May 2007
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posted
My 18 YO daughter has been told she has: Chronic mononucleosis Chronic Fatigue disorder possible Autoimmune lymphoproliferative disorder and since testing positive for Lyme's: Fibromyalgia Depression "something other than Lyme"
Posts: 217 | From New Jersey | Registered: Apr 2007
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
MD in Steere's office said I had Fibro, need I say any more? Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Patti, different doctor, mine was in Cincinnati.
GreatFrustration, the stress of losing a guy was enough stress to trigger my first full-blown Lyme flare. That was the time I was told not to drink so much. I wonder if he'd have come back to me if that would have made me better?
Stress has always been the trigger. Severe emotional stress ... thus the Somatization Disorder diagnosis.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've had several.
One was from a chiro: scoliosis.
I even believed him because I could look in the mirror and see that I couldn't stand up straight any more. I was also desperate to learn why I was in such excruciating pain and grasped onto anything that sounded the least bit reasonable.
Prior to that I had a dx of depression.
I was actually hospitalized for two weeks, and came out feeling worse than when I went it. Hmmmm....
After I got home, and was unable to return to work I began to tell my psych duck that I thought it was unusual that I would get up in the AM, get dressed and eat breakfast, then go back to bed to sleep.
His response: "Give it time, that's normal." HA!!!! I'm really hitting HIM over the head, not myself!
Finally, CFS and FM. At least we were getting warmer with these, but still no future.
Cyber friends began suggesting Lyme, but finding a doctor who would actually give me the clinical dx I needed after being ill for over 40 years wasn't easy.
Then my own duck became a LLMD! Thank God for that!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
This one may not be the worst I've gotten, but it's the most recent: TODAY--
I am very healthy! Only I am a nervous wreck (this comes from being a woman, I'm sure)
So because I'm so darn healthy, these are the drugs this duck duck duck prescribed for me, to start taking all at once:
Xanax ER Mirapex Cymbalta Depakote
I continue to look for a PCP who will refer me to the LLMD in Tampa, whose office won't see me without a referal.
No one with Lyme Disease has EVER tested negative. Ever.
I may not have needed these drugs before my appointment, but I think I need them now!
Posts: 353 | From Florida boonies | Registered: Nov 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Well, one in particular comes to mind. During the time I was being treated for my TMJ I had someone tell me..*I was in so much pain because it was bad Karma and I must have done something terrible in my previous life*!
Except I am a Christian and I don't believe in previous lives. Posts: 6638 | From Michigan | Registered: Jun 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Was told I had fibromyalgia...
Posts: 2557 | From home | Registered: Aug 2006
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posted
1. i was first told I could have lymphoma when I had swollen glands in the right side of my neck when I was ruinning a high fever. The doctor disregarded the fact that I had a red rash and the me that the muscle twitches I was experiencing were normal.
1. Then when my symptoms progressed i was told that I could have MS or low blood electrolytes.
2. Then when I started complaining about vision problems they told me this was normal. I saw an optomitrist who told me I might be having ocular migraines.
3. My next Symptom was heart palpitations and I was diagnosed with "anxiety" and sent me to see a psycholigist. This psychologist SAVED my life by telling me that I was not crazy and I had
lyme disease and needed to find a way for the physicians to diagnoss me. When I brought this up to my physicians they got ver upset and told
me that lyme disease did not exist in Florida and referred me to a neurologist who read my file, didnt listen to anything I had to say, and just assumed I had anxiety.
I was a college student at the time and had insurance trhrough the school so I decided to drive back home (which is 3 hours away) and see a new physician.
He told me i either had Lupus, RA, CFS, or Fibromygela. When both tests came back normal he was shocked and a casualy mentioned that I had been bitten by a tick (which was a lie) and I finally got my diagnosis :-).
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
I really didn't see that many doctors before I was diagnosed (Thank God). But I did a lot of waiting and seeing if it would just go away. I wish I would of been more agressive in the beginning. I knew something was wrong.
~The first doctor thought it was stress. (Whatever! )
~Then I had a doctor tell me I had heartburn. Uh, ok..
Everyone! I'm so sorry that all of you have gone through so much. Posts: 248 | From Tejas | Registered: Jun 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Cleveland isn't the only place that you can have "somatization disorder." This Marylander was diagnosed with it too.
My LLMD threw the report in the trash.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Meniere's Disease Migranes one of the Myalgias IC sudden onset of floaters, flashes, strobe light etc (was told this is normal) Panic disorder RA (in knees) PCOS
Too many to name!!!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
EBV CFS PTSD (and I needed Biofeedback!) Meniere's Hypertension Herniated disc Dehydration CDiff Chronic sinusitus TMJ Myo-facial pain syndrome MS (but gee, you present like a Lyme patient. Oh, your PCR from Quest is negative, so you CAN'T have Lyme)
Ugh!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
After my primary duck tested me for everything he could think of based on my symptoms - sent me to an infectious disease duck who said no way did I have lyme and told primary that - primary concluded that I was just depressed and there wasn't anything really wrong with me b/c all tests were negative/normal (except 4 different positive ELISA's):
Primary told me I needed to quit worrying about everything so much, and then actually wrote me a prescription that said "go out and have some fun"
Not as bad as all the horror stories here - but I find it humorous now!
Posts: 438 | From SE Michigan | Registered: Jul 2001
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Because I was bitten by a tick during my last weeks of pregnancy, had a bull's-eye rash and was "adequately" treated for Lyme, my continuing symptoms couldn't possibly be Lyme-related and thus I was diagnosed with:
postpartum depression
conversion disorder (the doctors thought I didn't want to care for my new baby)
dependent personality disorder (because I told a psychologist I had to live with my sister because I wasn't able to take care of my kids alone).
My niece, a physician's assistant, still thinks I have conversion disorder! After 4 years? Geez, I deserve an Oscar for this performance!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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