posted
Virus Post partum depression stress hormones Inflammatory illness of unknown cause Lupus- ANA positive MS-possible Sarcoidosis-possible due to elevated ace Hypercondria Generalized anxiety disorder Sinus Tacycardia (which I still have) Post traumatic stress disorder (yep you better believe it)
ER docs- PPD, Sinus infection, vertigo, anxiety, anxiety, its all in my head, I am scared because I jsut had a new baby and need to see someone for help, Theres nothing wring with you, bladder infection
It goes on and on.....
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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-------------------- Its not easy bein green... Posts: 11 | From Tickville | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
'60 Scarlet Fever (approx. age 7 in S. Ill.); heart murmur;
'71 Mono (college in Wisconsin);
'72 Tonsils out at age 19; constant ear & respiratory infections; vertigo; severe startles;
'76 Valley Fever (B'fd, Ca.; no treatment); ulcer (treated by doctor with only half & half);
'77 severe fatigue and vertigo (Boston, while in grad school);
'82 FM dx (in S. Illinois. Absolutely no information or advice);
'84 connective tissue disease; severe light sensitivity & fatigue (working in Wisconsin), "probable" LUPUS with high ANA; (Doctor said there was nothing I could do for the lupus.)
'87 walking pneumonia (while vacationing on the east coast); constant sinus, ear, throat, lung infections;
[ '89 - moved to Oregon and have lived there since ]
'90 CFS. High and speckled ANA several times around then. Immune panel with many abnormal markers.
'94 severe anemia; fainting.
'94 misdiagnosed - bipolar, depression.
'95 vestibular dx, hyperacusis & severe sensory dysfunction; endolymphatic hydrops
'95 chronic porphyria (proto & variegate) by Mayo tests;
'96 seizure disorder (triggered by severe startle from sounds, deep or pulsing vibrations, flashes, motion); EEG's normal; 3 QEEG's all abnormal (but QEEGs are not considered by MD's). Oto-neurologist determined the inner ear to be triggering seizures but also told me to get tested for lyme.
'96 Negative ELISA for Bb (lyme).
'97 Igenex positive Western Blot for Borrelia b. ; Babesia and HME (human monocytic ehrlichiosis );
[Testing was ordered through Igenex lab by N.D. (as no M.D. would do the advance testing). Treatment withheld, as no M.D. in my state would acknowledge tests or treat. I did the best I could afford with alternative treatment. After 3 years, I got 2 months' doxycycline.]
'07 Coxsackie virus, positive for a few strains; past exposure.
'08 Cpn with very high IgG and IgA, indicating persisent chronic Chlamydia Pneumonia (by a few researchers, though not by the medical profession in general).
'08 HHV-6 - positive, past exposure.
(Note: many tick attachments since childhood; some discovered days after being in the woods. I've lived in many states.)
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[ 20. June 2008, 01:08 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
WOW! This list is getting soooooooooo long!
But it is exactly what the people need to see to oen some eyes.
You all are getting ahead of me... but keep it up!
I will catch up soon!
And how sad it is to know this is still happening.
posted
Non-specific inflammatory arthritis Candidiasis Generalized anxiety disorder Depression Chronic fatigue syndrome
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Great... we are on a roll!
And if your state isn't listed... would you be so kind as to post it or email me your screen name and the state?
I would like to get a count of where these are coming from... a general area and idea.
posted
I already posted on this thread earlier, but I only did dx from 2003 when full neuro lyme hit.
I was intitially exposed to TBI in approx 1974-ish and prob had several bites since then prior to the "crash" of 2003
Here are more dx from childhood - through early my early 30's
Depression childhood insomnia Anxiety "Shyness" Raynaud's Syndrome Ovarian cyst (surgery at age 20) eczma, odd rashes etc food allergies heart murmur constant sinus infections migraines folliculitis "at risk" for Lupus (whatever that means) fibroadenoma
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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bettyg
Unregistered
posted
hi tincup,
a suggestion since you posted a separate thread to those answering who did NOT show the state they live in.
could you edit your 1st post and ask them to show their STATE in their reply or to send to you by email, and show your home address??
click pencil to open up text part to add STATE needed comment....
thx, i just sent your request to my LYME LIST GROUP including you, and asked them to come here.
most do NOT post here, so by having your request in the top post; they will know that is needed too!!
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-chronic sore throats (said they were just viruses)
-Cellulitis (several times legs became swollen with rashes from "bug bites")
-pleurisy (hospitalized several times)
-MONO suggested a hundred times ( had it once and then they never knew if it was showing up as past or active infection so they would just give up at that point)
-depression
-TMJ (went away after LT abx)
IN COLLEGE:
- more & more "pleurisy" incidents
- more "mono"
- viral thyroiditis
- endometriosis ( I actually did have a mild case, but I spent 3 years just focusing on the endo b/c they told me that it what was causing everything)
- making it up or depression
- IBS (even though I did not have any symptoms, they put me on meds "just in case")
- normal college stressful lifestyle (except I wasn't able to have a "normal" college life)
-I was told I was pregnant or was having an ectopic pregnancy countless times (especially funny as pregnancy was not possible as I was not having sex)
-drink fluids and get some rest, it's just a "virus"
- breast cancer (ended up being MRSA in one breast)
I grew up in Texas and grew up picking ticks off of my self. I estimate I have had well over a thousand tick attachments over the years, and yet I was NEVER tested for any tick borne illness.
I had to go out of state before Lyme was even suggested as a possibility. We were never taught the dangers of tick bites, as it is thought that there is zero risk in Texas.
It is heartbreaking to read the battles everyone has had to go through to get a diagnosis and I hope and pray that it will not always have to be this big of a fight to get proper treatment!
Posts: 46 | From Texas | Registered: Apr 2008
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posted
Most doctors I saw didn't dx me with anything. They simply said everything looked fine.
The last doctor I went to, before finding an llmd, said I had heartburn. All of my symptoms were because of heartburn.
I gave him the benefit of the doubt (because I was desperate) and took acid reflux meds. It didn't do a thing..
Posts: 248 | From Tejas | Registered: Jun 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Asthma Depression Fibromyalgia And according to my family, just lazy!
posted
sorry, I forgot a few! It's hard to remember a decade of bad dr's visits....I guess I try to block some of them out!
-chronic conjuntivitis (would always come back even after eye drops)
-you just have the flu
-walking pneumonia
-vertigo ( trying to explain dizzy spells and partial blackouts)
- hormonal problems (although they offered no solution) were trying to explain years of low body temp followed by years of constant, unexplained fever
- and my personal favorite....one doc told me I was just constipated and to eat more fiber! Like that would explain all my symptoms!
Posts: 46 | From Texas | Registered: Apr 2008
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posted
1st symptoms in 3/2005= left elbow pain and shoulder weakness.
Possibilities/Diagnoses:
Tumor Guillain-Barre' Syndrome Multifocal Motor Neuropathy Mycotoxicosis/Trichothecenes Chronic Inflammatory Demyelinating Polyneuropathy West Nile Virus {false-positive} Hemiparesis secondary to mycoplasma {but did not give antibioitcs, just IVIg's} Myasthenia Gravis Motor Neuron Syndrome 1 Pediatric neurologist...???? Couldn't tell us... Chiari malformation Syringomyelia
-Twice clinically diagnosed with neuroborreliosis. Ttested positive for mycoplasma pneumoniae 3 times in blood and CSF -IgG positive= HHV-6 -Bowen QRIBb tested highest + at 1:126 -Fry positive -Heavy metals in urine: aluminum, cadmium, mercury and tungsten
-------------------- Get our free Lyme Aware poster by writing [email protected] Posts: 8 | From British Columbia, Canada | Registered: May 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
I already posted my list, TC, but wanted to add:
I presented to my PCP in Oct 2000 with a bullseye rash. It had started out about the size of a quarter and by the time I went to his office 2 weeks later, it was about 5" across.
The PCP noted that I did not see a tick. But, he actually ordered the Elisa and WB (from Quest). Of course, they were both negative.
Negative tests = no lyme = no treatment. Lucky me!
When my body finally crashed in Oct. 2006, the PCP told me that the only abnormality that he could see was that my B-12 levels were on the low side. So the cause of my over-exaggerated symptoms was probably due to my body being overly sensitive to lower B-12 levels.
Shesh . . .
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
Migraines Vestibular Neurinitis Otosclerosis Mononucleousis Chronic Fatigue Environmental Allergies Depression Diverticulitis Anxiety Get this...weak knees Whiplash residual Syndrome X Food Sensitivities Oh, and my favorite: "Could be MS or Cancer"
Oi, Wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Son:
tick bite, age 5
trouble getting classwork done, age 7
panic attacks, age 10
depression and dysgraphia, age 11
depression and oppositional defiant disorder, age 12
+ for Lyme, age 13
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Depression
Mental Disorders
MS
Making it up
HellifIKnow-
and Most often you are Waisting My Time-
Finally I figured it out before it killed me- --I was LUCKY --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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I have a letter signed by my old infections disease doctor in Tulsa stating that there was no possibility that lyme could continue after my 30 days of treatment.
Posts: 183 | From Texas | Registered: Nov 2007
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daise
Unregistered
posted
Since puberty: Signs and symptoms of bartonella but no diagnosis(insomnia, soles of feet red with pins and needles, and burning.)
Starting at age 52: Stroke (misdiagnosed, actually Bell's palsy) Severe hypothyroidism Bone infarct in right leg PCOS Myofascial trigger points Neck out of alignment with spine at C1 and C2 Fibromyalgia / chronic fatigue Menopause (false!) Depression (no antidepressant) Lyme, bart and babs
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posted
RA Lupus Possible MS Possible Cancer Poor eating and lifestyle choices Depression Crohn's Disease IBS / ulcer
It has to be one of these because THERE IS NO SUCH THING AS LYMES!!!!!
(Ha. LOL! we know that's false!!! And don't you love the addition of the "s" on the end of Lyme????)
Posts: 26 | From Tuscaloosa, AL | Registered: Aug 2007
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posted
was told I have panic attacks then possible MS possible lupus possible RA then was told I had fibromyalgia the GAD
Posts: 229 | From front royal, VA | Registered: Jun 2008
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posted
Dehydration Malnutrition Otosclerosis Fibromyalgia Multiple Sclerosis Dermatamytamosis Stress "Fever of Unknown Origin" Must be Lupus Hypoglycemia TMJ Trigeminal Neuralgia Asthma COPD Costochondritis GERD Irritable Bowel Syndrome Spastic colon Anorexia Nervosa Ocular migranes Herniated disc in neck "Must be HIV" Cancer "somewhere"
I have been told I have ALL of these....but of course there IS no such thing as CHRONIC lyme....you just have EVERYTHING ELSE under the sun. And I am sure I forgot even more of them.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
I'm not exactly sure when I contracted Lyme---I spent all my summers growing up either playing or working on Fire Island, NY (the tick capital of the world!) But I didn't pursue any diagnoses until I was a young adult, so I'll list those:
fibromyalgia chronic fatigue syndrome costochondritis sjogren's syndrome ankylosing spondylitis pleurisy connective tissue disorder, tendonitis ADD anxiety disorder sleep disorder restless legs syndrome IBS GERD TMJ inguinal hernia hiatal hernia chronic sinusitis environmental allergies chemical sensitivities vertigo arrythmia/mitral valve prolapse autonomic dysfunction uterine fibroids migraines degenerative disc disease stomach ulcers vitamin D deficiency "severe neck sprain" (although I had no injury to neck--just couldn't move it--excrutiating pain) infertility (but seven years of experimental treatments and surgeries paid off--3 kids!!)
I had to laugh when I looked at my list. I sound like a walking disaster. That's one of the weird things about lyme----everyone (including my llmd) always tells me..."but you LOOK so good". Maybe if we looked a little worse, people would take us more seriously!
Posts: 345 | From East Coast | Registered: Apr 2008
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posted
I always figured if I had turned green then I would have been diagnosed, treated and on the road to wellness in no time at all. Unfortunately I always look so healthy!
-------------------- Get our free Lyme Aware poster by writing [email protected] Posts: 8 | From British Columbia, Canada | Registered: May 2007
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Fibromyalgia - the main label I got. FM was thought to be possibly a post-viral syndrome. I had had a lot of herpes infections prior to FM, so I accepted that explanation as to what had messed up my body.
Myofascial pain syndrome
Back injury
Poor posture
Costochondroitis
Chronic pain syndrome
Depression
Stress
Anxiety
Undetermined amount of functional overlay (meaning I was getting something out of being not well)
Bad relationship with family
TMJ
Pituitary tumor/hormone disorder
Candida
Chemical sensitivity
[ 23. June 2008, 09:05 AM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I do have many of these either in addition to or as a result of the lyme, but they were offered as stand-alone dxs for all my symptoms at the time
And the kicker - if I only lived a "healthy" lifestyle (proper diet, supplements, exercise, sunshine), I'd get better.
Did that for close to a year and got worse. Go figure.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Lupus
Post Traumatic Stress Disorder
Congestive Heart Disease
Generalized panic/anxiety disorder
"It's all in your head" diagnosis
Kidney failure
Fibromyalgia
Pre-Diabetes
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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1Bitten2XShy
Unregistered
posted
I had many, but my 2 "favorites" are:
PCP = You just need to pray more and handed me a religous medallion of his.
PCP = When he figured prayer was not working, he told me I had Leukemia!
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I probably left off another 10 or so but because of the fog I am unable to think clearly.
Posts: 90 | From Knoxville, TN | Registered: Jun 2008
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posted
Posting for my husband who contracted lyme in 1990 while visiting in Connecticut. We live in NC though so all physicians seen were from NC, with the exception of a week at Mayo Clinic which resulted in no diagnosis, more of a "go home and stop faking" type message.
In 2002, 11 year old daughter found an engorged deer tick on her while back in Conn. and tested CDC positive for Lyme. For about three years she kept saying, "Daddy, you have Lyme!" At her next LLMD visit, he made an appointment with her doctor. My husband has never had a positive Lyme test but has been treated on a clinical diagnosis since 2005.
In "fairness" I do have to say that the possibility of him having Lyme was considered by many specialists he saw and he was given the standard Lyme tests each time. They just were ignorant about looking outside of the "party line". I am seeing a slow but encouraging attitude regarding the possibility of Lyme disease in the absence of positive testing among NC physicians in the past year year.
Every little bit of knowledge is better than where we were four years ago when my daughter's pediatrician called our home at 9:30 at night to warn us that her IDSA buddy in Winston Salem told her it was her "professional responsibility" to let us know that the care our daughter was receiving from her NC LLMD "amounted to quackery"! Progress is slow, but it is progress.
Here is my husband's partial list, I can't possibly remember them all:
Chronic fatigue Possible lupus (often considered) RA Sleep disorder deviated septum causing sleep disorder which was causing all the other symptoms surgery for deviated septum which would cure sleep disorder which would relieve all the other symptoms (not) depression cellulitis-several times chronic sinusitis food intolerances allergies cytomeglovirus (or something like that, sounded ominous) fibromyalgia hypochondria/malingering "we've never seen anyone get as many strange infections as you!"
Posts: 25 | From NC | Registered: Jul 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Labels such as MS, Myasthenia Gravis, AL's, Parkinson's, Lupus, Valley Fever, etc were suggested but then ruled out for the most part.
EBV but also had doctor's say that they thought after a certain age everyone tested positive for EBV.
I guess. I did not go back to UCSF or Samsun clinic to get their final dx..ran out of insurance.
Knew enough then to know that when it comes to lyme disease many of the doctor's don't have a clue.
A couple of local primary docs suggested fibro, stress from work, CFS, see a shrink
Saw a pyschiatrist...he talked with me for an hour.
Said symptoms were medical not pyschological and to find a good MD>
Saw a person who specialized in fibro...said he did not know what I had but it was not fibro and to get back to him when I found out as he would like to know.
Had doctor's also who did not believe in fibro or CFS.
Insurance got in the way big time of getting a dx as most docs needed to stay within the insurance box for testing and sending me to specialists or not....mostly not.
If some of those bizarre symptoms I had that came and went for years before I was too sick to work or do household chores were lyme...
I was told at the time..
stress
silent migraines when I could not see or hear..it would come and go
inner ear infection when the classroom would spin around
bad marriage....need to get out of it (they were right, but medical needed to be looked at too.
Mycoplasma was mentioned by one doc but she would not do what it took to get approval from insurance to get the testing.
She also would not send me to a doc at Stanford that had been recommended because she would not get her quarterly bonus if she did so.
I found many of the primary doctor's in the small town I lived in would wait 3 months before telling me insurance had denied something.
Then, when I called insurance to see what needed to be done to get it through they would tell me the doctor's office never asked.
I started catching on after about the 4th primary doctor...yep...lyme brain ya know and being naive about the medical field..thinking they were there to do all they could to find out what was wrong and help me get my health back.
Silly me.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
TMJ torn rotator cuff mystery knee injury gout osteo arthritis arthralgias sinusitus rheumatoid arthritis
Posts: 69 | From So Cal | Registered: Jun 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Holy COW again!!! This is insane!!!
Why don't they think Lyme FIRST?
Grrrrrrrrrrrr....
Anyhow... you all are wonderful to post and share. I will not tally up yet.. as I figured we need at least 120 posts here to make 100.. as some have posted 2 or more times.. like me!
So keep them coming and know that I appreciate each and every response!
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Then possible MS. DLL
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