------------------
It never was so dark, or it will be light.

2. Female

3. New Jersey

4. 5 months (but have some late stage symptoms)

5. 5 months....starting IV's next week

2) Sex
F

3) What state do you live in?
CT

4) How long have you had Lyme?
This summer it will be 18 years.

5) How long have been recieving treatment?
Since Sept. 2003.

6) Where you mis-diag'ed w/ something else before Lyme? What was the diag?
Yes. Ankylosing Spondylitis. Then Fibromyalgia and CFS.

What a nightmare! I wish had positive labs!

2. F

3. MI.

4. ? up to 10 yrs.

5. for 7arl. mounths in 2002-03, Doxy.
relapes.

That is rather odd that most are female that are on this board. Is is because the males do not seek help? Or most will not go to the doctor unless they feel liket they are going to croak? Hmmm, just a thought.

Since I did not copy the q's, let me see if I can get it right.

Rash on leg in 1988.
I diagnosed myself, requested WB at Igenex, and tested positive December 2003.

Previously diagnosed with fibromyalgia and migraines.

Self treating, but now seeing an LLMD.

misdx for 34 years after getting mono;
======================================
dx correctly for 3 months since 7-12-04;

2 mo. treatment: biaxin, doxy, & biaxin, and AVOIDING SUNLIGHT; eliminating supplements

misdx: mono, FMS, CFS, MCS, IBS, gerd, 3 x lupus w/out any meds given!; major depression, anxiety.

1. 27 (28 in nov.)

2. still female

3. NJ

4. infected 1987

5. morons treated me from July 2000 thru march 2001

my current llmd (who saved me from a wheelchair and who knows what other horrible fate) has been treating me from march 2001 - present (and until i'm well)

6.
before diagnosed ages 10-12: growing pains, faking, i drank to much ice t, it was my fault i was sick, viral (dont worry about it) and more nonsense. (never even tested for lyme)

since dx of course fibromyalgia cuz i had treatment for lyme

7. I have been disabled since 2000 (my symptoms are very severe right now after many complications)

8. had ehrlichiosis (its gone now)

llmd suspect babesia

Oh and I also wanted to comment that I think that part of the reason most of us are female on here because more females get misdiagnosed there fore get delayed treatment

(i believe women are much more likely to be diagnosed with the its all in your head plus they can always play the "its menapause" card)

I think the other reason is because men are less likely to reach out for support like this board offers.

2. Female

3. Utah-may have been bitten in England
or Washington DC

4. At least since 2001, probably childhood or early teens-definately late diagnosis

5. 4/2004 Amoxocillin, Bioxin, Spectracef, Levaquin, Doxy, will be starting IV Rocephin soon

2) F

3) Virginia

4) Not sure...have been strongly symptomatic for 4 years, but now suspect milder symptoms going back 9 years (like permanent unexplained numbness in one hand) may have been lyme. Last time I know I was bitten by a tick was about 13 years ago. Thought nothing of it at the time

5) Specifically for lyme, 2.5 months. But I've been on oral abx for over two years (for reactive arthritis).

6) POOR POSTURE (not kidding...my first dx. I got sent to physical therapy for two months by an orthopedic surgeon, which HURT!).

Then two neurologists said no idea, and a third said it might just be depression (hmmm...caused by my lousy medical care??)

A mind/body doctor (when out of desperation I tried an alternative pain clinic) told me my mother had been abusive and anger was causing my pain (my mom certainly wasn't abusive, but I soon became angry).

My eyes started bothering me and given the pain I was in my opthalmologist suspected Sjogren's and sent me to a rheumatologist ... who said there was nothing wrong with me!

quote:

---

Originally posted by c-rob:
I would like to conduct a quick/informal poll of other Lymies. Here are the questions.

1) Age 39
2) Sex Female
3) What state do you live in? PA
4) How long have you had Lyme? diagnosed 1 week ago
5) How long have been recieving treatment? 1 week Doxy
6) Where you mis-diag'ed w/ something else - no but they thought I had mono.

I am feeling better since starting the abx but still have bad days. I think I may have had this for a while as I've been having chronic neck stiffness and headaches which I thought were tension headaches. I just kept goign to the chiropractor...the would wax and wain but they were getting worse and worse and occuring more frequently. Three weeks ago I cam down with what I thought was a bad viral infection or flu...high fever for 4 days, very tired...couldn't get with it.
What was the diag?

For me:
1) 35
2) Male
3) New York
4) June 2000
5) October 2000 (Doxy)
6) Yes -- Possible ALS

---

quote:

---

Originally posted by jackieu:

---

quote:

---

Originally posted by c-rob:
I would like to conduct a quick/informal poll of other Lymies. Here are the questions.

1) Age
2) Sex
3) What state do you live in?
4) How long have you had Lyme?
5) How long have been recieving treatment?
6) Where you mis-diag'ed w/ something else before Lyme? What was the diag?

---

quote:

---

Originally posted by c-rob:
I would like to conduct a quick/informal poll of other Lymies. Here are the questions.

1) Age
2) Sex
3) What state do you live in?
4) How long have you had Lyme?
5) How long have been recieving treatment?
6) Where you mis-diag'ed w/ something else before Lyme? What was the diag?

---

1) 23, will be 24 in November!

2) female

3) Massachusetts

4) EM rash and initial symptoms in 1996, treated with 10 days of doxy

5) In treatment since February 2004.

6) After the original lyme dx (which was allegedly treated - ha!) I was diagnosed with CFS, fibro, MS, bipoloar disorder and depression. Three years on antidepressants did nothing for me - 3 months on antibiotics and the depression was gone!

Oh my goodness. I just noticed the original posting is from Nov 2000!

Well, at least I tried...

Michael

quote:

---

Originally posted by groovy2:
What do you think?.
I have had Lymes about 17 years( 15 yrs undiagnosed ) I have gone threw all the
hell most of you have. I am now 49.
After reading hundreds of your posts
and looking back threw many of your
historys (posts)--It seams like
nobody ever gets cured or gets
much better. Lymes has Totally
ruined my life. I have fought as
hard as I can --But I am loosing
the battle- My 85 year old parents
are in better shape than me.
My kids are in there 20s and
dont really have much to do
me. Ive been sick most of
there lives- Lymes distroyes
families too.
So I have been thinking of selling
all my Stuff-home ect. worth about
$100k .Then go see the world for as
long as I can.Do fun stuff-Sky dive-
ride a bike in Holland - take a helecopter ride- see NYC - eat some good food- ect.
I do not want to wither away. I kind of
think it would be better to be a bright
flame than smolder away. Dose anyone
know anybody that has choosen this path.
I would like to know how it went for them?
---thanxs --Jay ---

---

Dear Jay,

First of all it is just NOT true what you're saying about nobody gets cured or gets better.

Lots of people have gotten cured and are feeling better.

I saw a discussion/link about this a few weeks ago on this forum.

I hope someone else will come along with the information cause I can't find it right now.

So there is hope! And how difficult can it be to kill some damn keets?

Yes, I know. DIFFICULT!

I know it sucks to have Lyme.

I've only known that I have it for 7 months now, during which I have received treatment.

I'm no better than 7 months ago.

I'm certain that I've had Lyme for >10 years, possibly my entire life.

I feel your dispair and level of irritation that nothing seems to help.

I fight that every day. And so far, I've gotten the upper hand.

But there are times when I feel like giving up. And damn it, I hate it when that happens.

FWIW.

If you don't mind me asking, I, and others too I can imagine, would be very interested in learning about your test results, medications, treatments, and reactions over the last two years.

And which LLMD are you seeing?

Which coinfections do you have?

Btw, all the things you wanna do sound like so much fun...

1983--Bitten by the tick that put my life on hold for 21 years.

Immediately diagnosed with strep (first and only time)
Diagnosed with `mood swings' shortly thereafter
High Epstein Barr Titer
Had a root canal and it was all downhill from there.
Had to give up custody of my 3 very young children
Psychiatric hospitalizations

Not Necessarily in Order:
High Epstein-Barr titer
Acne
Blood clot in my leg
Insomnia
Inability to wake up
Anxiety
Depression
Panic
Chronic candidiasis (1980s). Nystatin powder
Allergies. (Dr. Croker) Beef, mold and dust allergies
5 miscarriages, 1 ruptured tubal pregnancy
Respiratory muscle weakness/periodic paralysis
Lost sneeze, cough and gag reflex
Leg and arm paralysis at night
Hearing loss in 1980s
Galactorrhea since 1984
2 vaginal hemorrhages and heavy menstrual loss since tick bite.
Periods stopped in 2001. Began again after lyme treatment started in July 04.
Gout-like lumps on fingers
Migraine headaches
Seizures began in 2003
Irritable bowel
Bladder infections
Suspected kidney problems
Blood specimens frequently hemolyzed. Also have hypersegmented neutrophils on manual smear.
Lymphedema
Carpal tunnel
Had epidural steroid injections in spring of 2004.
Altered pigmentation
Electrolyte imbalances
Raynaud's phenomenon
Lupus
Reiter's Syndrome
Stridor
Chronic Dehydration
Hypokalemia
Chronic anemia

September 4, 2003. Fecal and urinary incontinence. Thankful it was temporary.

October, 2004. Lost my two front teeth (crumbled) and have had 2 dental consults. I need a full mouth restoration, but no gum disease and few cavities.

November, 2004. Right eardrum ruptured. No cold, sore throat, etc.

Meningitis December 13, 2004. Hospitalized in Springfield, MO from 12/13/04 to 12/22/04. Uncontrollable High Blood Pressure. 200/120. Also low magnesium and potassium.

December 28, 2004. Another ER visit. Diagnosed with Cellulitis in my face and Herpes Simplex.

April 2000. Endoscopy was done and GI told me I had `some kind of infection' in my stomach. Told me it `might be' H. pylori. Also removed a colon polyp.

Breast Cancer. Diagnosed with infiltrating ductal carcinoma in April, 1995. Lumpectomy and radiation.

Much of 2003. Stroke-like Symptoms. Rushed to ER with stroke-like symptoms. Worked up once for stroke with one CT/MRI.

Mayo Clinic, 2003. I spent 8 months on and off at Mayo Clinic in Rochester, MN. I asked for one thing when I was initially screened by internal medicine: `Please test me for lyme disease.' Dr. told me my lyme test was negative and I had great difficulty believing her. I learned this spring that she didn't order a western blot.

Mayo Clinic, 2003, Lung Transplant. Mayo Clinic told me I was looking at a lung transplant/lung reduction surgery in the near future. Have the letter from the pulmonologist right in front of me.

Sleep Study/Mechanical Ventilation. Mayo Clinic performed a sleep study. I met with the doctor the following morning and he read the results on the computer. He said, `I don't know what to make of this . . . the bottom portion of your sleep study indicates you need to be on mechanical ventilation.' Records later state `technical difficulty.'

Breast MRI. Mayo was able to visualize the breasts with MRI until contrast enhancement. They had `a problem with image acquisition following contrast enhancement.' Another technical difficulty.

Mayo reversed lung diagnoses and records state `technical difficulties.'

Scalp Lesions. Diagnosed with folliculitis while at Mayo.

Medical Genetics at Mayo. Said I most likely have Ehlers-Danlos syndrome. Also told me my respiratory muscles (diaphragm?) was weak and we needed to look at entering the research study for the tenascin gene.

Precancerous Lesions. Three precancerous lesions were removed from my face and thigh within 2 months while at Mayo.

Autonomic Studies. Peroneal nerve and old nerve root injury.

Degenerative Disk Disease.

Mitral valve prolapse with mild regurgitation (June of 2003).

Cognitive Studies. IQ was 89th percentile in 2000 when I was diagnosed with ADHD. IQ had fallen to the 9th percentile when I was tested at Mayo.
Mayo Sent me to Psychiatry then home for good. They were finished with me.

Pituitary Problems. June 23, 2004 Pituitary, adrenal problems, low testosterone, low growth hormone, low progesterone, low ferritin.

Bronchoscopy/Lung Biopsy 2002. Blood in throat/sputum, had lung biopsy/bronchoscopy. Candida was isolated in the lungs and trachea.

Another Endoscopy 2002. GI found antral lesions and told me `something is attacking your CNS.' Dr. said I had paraneoplastic syndrome or radiation damage. Later retracted and told me I have a somatization disorder.

Elevated Parathyroid Hormone
April 12, 2004
PTH 108 (Normal 10 - 60)
Ionized Calcium 1.30 (1.14 - 1.30 mmol/Liter)

April 22, 2004
PTH 61 (Normal 10 - 60)
Serum Calcium 9.7 mg/dL (8.5 - 10.4)

Elevated VMA, Adrenal glands. Worked up for pheochromocytoma twice with elevated VMA.

1985. Sudden onset of flank and abdominal pain with bloody urine. Hematuria has been persistent/chronic for 20 years. Onset of migraine headaches, joint, muscle, bone pain and fatigue began around the same time. Lupus, scleroderma etc. suspected/treated on/off for 2 decades. I have had consistent negative workups, but had good response to plaquenil. Rheumatologist eventually prescribed 10 mg. of prednisone which I took for a few years.

Prednisone. 10 mg. of prednisone discontinued w/o taper. I had adrenal failure with a 90 lb. weight loss, (vomiting, anorexia), eventual cessation of menses, increased pigment in skin.

More Prednisone 2003. Prescribed 60 mg. of prednisone for 3 months. Things got even uglier.

Hypotension. BP is typically too low, sometimes unobtainable.

Had sudden onset of high blood pressure in the fall of 2002. Blood pressure had always been on the low side until then. ENT doctor sent me to the ER at a routine visit due to high BP. Spent 7 hours in ER stabilizing BP.

Suspected Internal Bleeding. Had excruciating abdominal pain (worst pain I've ever had). ER treated me for constipation (duh). Left this facility and went to Mayo. Mayo discovered significant anemia, coded as iron deficient anemia secondary to blood loss. Initiated iron supplements 3x per day, was able to walk more than 10 feet for the first time in 2 mo. Cautioned about future abdominal pain and internal bleeding.

Antral Lesions. Antral lesions found at endoscopy.

Diagnosed w/ tinnitis and hearing loss (both ears) in 1986? Doctor recommended hearing aid recently (decided to wait).

Vestibular Neuropathy, 2002. Technician could not obtain pressure in tympanic membranes.

Parathyroid/Calcium. Calcium levels fluctuate. Hypocalcemia and high parathyroid.

Necrotic Bone, Striated Muscle. I have bits of necrotic bone and skeletal muscle coming from my oral cavity (jawbones).

Radiology. Symptoms of kidney disease with chronic hematuria since 1984. Granular casts and mild protein with high clinical suspicion for kidney stones when evaluated 1985 through 1995.

Bone Demineralization. Bone demineralized in left elbow area 1994.

Bone Lesion. 4/20/03. Lytic / Sclerotic Lesion (Zygomatic Arch)

03/03/2004 NM Bone and/or Joint Scan
Procedure. 27 mCi technetium-99m HDP IV.
Findings. There is a focus of increased uptake which seems to be in the left L4 vertebral body. This is seen only on the anterior view and not seen on the posterior views, suggesting this is an anteriorly located area of concern. Also, there is questionable increased linear activity in the right anterior iliac crest of the pelvis. No other foci of increased or decreased uptake are visualized in the skeleton to suggest any areas of bony metastasis.
Impression.
1. A small focus of mildly increased activity is suspected in the left side of the L4 vertebral body. This could represent metastatic disease or trauma. Further evaluation of this may include MRI, especially if plain films are negative in this area.
2. Questionable linear increased uptake in the right anterior iliac crest area, which is also slightly suspicious.

Abnormal Pituitary MRI. The suprasellar subarachnoid space protrudes slightly into the sella turcica in the midline. I think this probably simply represents bulging of the diaphragm selli into the sella turcica. This really does not have configuration at this point to be what I refer to as an empty sella or partially empty sella I do not believe. Likewise I do not think this represents any type of subarachnoid cyst with no evidence of mass effect in the pituitary stalk midline.

Gallbladder Removed. Pain and nausea, unable to eat due to vomiting. Inflamed gallbladder, no stones.

Common Bile Duct. Fusiform dilation of the common bile duct found after numerous tests. Initially thought to be congenital but was not seen on films 3 yrs. later.

Pathologic Fractures. Pathologic fractures noted in ribs and occult stress fracture in lumbar spine (L5).

Osteopenia. Suspected osteopenia in 2001. No further workup.

Osteoporosis. April, 2004. Suspect osteoporosis in addition to other orthopedic complications per radiology studies.

Endocrinology. Advised to make appointment with endocrinology to address metabolic issues, bone disease.