posted
I experienced weakness in my L leg along with a headache when I was on the bike at the gym. Was worked up for stroke, but nothing came back positive on my tests even though my L eye started drooping while I was in the hospital getting tested.
They sent me home, and after I woke up one night completely numb and unable to move anything, I knew something was seriously wrong.
I'd forgotten waking up with numb/partially numb hands earlier in the year, so when this happened, I Googled "night numbness", and came up with various unusual myelitis' and Lyme.
I remembered a weird insect bite I'd gotten last year but didn't go to the Dr. about, and I knew then that's what I had.
Getting my Drs to believe that's what it was is another story, which I know many here have toiled with as well.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
My wife was diagnoised with Fibromyalgia a couple of years ago but pain and symptoms continued to worsen.
Started to walk with a cain, unexplainable pain in her hip joints, extreme eye dryness were just a few.
After MRI's all over her body and a lumbar puncture to rule out MS I started looking for an answer. There is NO WAY she feels this bad to have doctors say there is nothing wrong.
She has about 95% of the symptoms on the list for Lyme. Her appoint with the LLMD is the 19th and we really hope for some relief!!!
Posts: 82 | From Summerville, SC | Registered: Sep 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Keep us posted cgooge,, glad you will finally find some relief for your wife..
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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Only when I got mastitis (inflammation of the mammary gland) and my gyn suspected an inflammatory breast cancer,
Gabrielle
My gyn ordered a mamo, ultrasound and surgeon all on the same day because he suspected inflammatory breast cancer. It wasn't until a friend with cancer who called the next day to tell me she was praying for me, my family and the outcome of these visits did she mention that her grandson had been taken to the doc with a large lump and dx with lymes that morning.
I remembered that I had pulled a tick off my back & put it in an empty medicine bottle marking the date (6/28/05) to on the bottle. I set the bottle on top of the refrigerator and never gave it much thought.
I asked the gyn to order a lymes test (silly me) and what I found was nobody wanted to test me. I went to a walk-in clinic where a nurse practioner who claimed she had contracted LD many times prescribed 2 weeks of doxy and sent me home. At that moment I was relieved I had lymes (I had 2nd thoughts later).
I have since found a LLMD and was tested through IGenex. My lymes came back positive, Babisia, Ehrlichia - mono & granu - all low titer; chronic.
Now I know that the majority of 40 years of serious health issues which have included salmonella, severe anemia, classic & hemiplegic migraine, seizure activity, several rounds of pneumonia, strep & staph, irritable bowel, divaticulitis, hypothyroid/hashimotos and an unnecessary brain surgery by JHU, have been partly / probably due to an undiagnosed case of lyme, babs & ehrlichia.
I'm getting better (actually I think I'm getting worse first) but the hope is that I will be a healthier person overall. Broker but healthier.
The best part is I now know that I need to fight a fight for my children. If I wouldn't have been bit by the lastest tick, I wouldn't of known, and they would have just lived a sick life, like I have.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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posted
Terrible night sweats - so bad that I couldn't sleep for weeks. I looked for YEARS on the net, only to find the Lyme dx through a bladder infection support group.
The nightsweats and fever, the cold, the temperature changes to unbearable, so painful, I was going to kill myself. fortunately, months later, I found my answer. ( and some meds )
( and I am still feeling better - I just herx for 2 weeks a month, compared to 4 ). Stopping meds in two weeks after nine months ( zithro/plaquenil/mepron )
Posts: 19 | From vancouver, BC, Canada | Registered: Apr 2005
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posted
Long post but please read, its a compendium of my symptoms I've been recording since I suspected lyme and saw my LLMD:
TIMELINE
1) Sometime in June/July: bitten by tick, lodged in cheast possibly 3 days, tic size of capital D approx. Ticks were very aggressive and numerous that day, sat on bench saw many crawling on me within seconds. 2) July 30: after neglecting to take Enbrel for about 2 weeks, resumed taking enbrel, took 25 mg dose early Am with coffee I believe. Within about 6 hours felt slight dizziness/brain fog, sudden onset. My theory: lyme was in me incubating, when I took the enbrel (for spondylitis) the immune system crashed and lyme took the opportunity. 3) Fog, breaking of concentration continues for two weeks, concentration drops off when driving as if very tired, but I was not really tired, only brain was. 4) Cognitive symptoms worsen during next two weeks on resuming law school classes. Pressure/inflammation feeling moves around in head, flared up when talking with professor, was in back of head. Also flared up a bit when at rest, however. As if trying to concentrate/flex with a tense, grinding muscle. Symptoms wax and wane over hours/days. 5) At one point earlier last week felt as if was really leaving the cognitive symptoms, then they returned.
Symptom history:
1) headache mild comes and goes 2) pressure/feels like brain tenses up when its worst 3) focus drops off, difficulty concentrating, etc cognitive waxes and wanes but almost always there....felt like it was gone a few days ago, then came back 4) maybe some ed/loss libido (related to propecia?)...propecia discontinued as of two weeks ago approximately...today19 sept. 5) hypersensitivity, painful (mild) of patches of skin: near left wrist, on top of left foot/toes...that was on the left side, prior to that....week before, we had hypersensitivity of skin on under side of upper arm, on right side...feels like a rash sort of, but with no visible redness....at the moment so sensitive on right side of wrist that it hurts slightly, feels like rash/burning.....the sensitivity on the wrist seemed to follow the big vein sticking up on my left forearm... 6) some tingling occasionally in limbs, feet 7) mild cheast tightness 8) possible very vague sore throat 9) increased (?) floaters black blurry specks on eyes, transient, other than that no vision changes 10) eye pain occasionally, a little more when moving eyes 11) maybe some discomfort swallowing, vague feeling sore throat
Sept 18th --Felt worst cheast tightness so far. It was very mild relative to a heart attack, but the most intense from what I've experienced so far. Cheast tightness seems to be always present now, accompanied by dull pain when filling lungs up to a certain point.
October 5th
Been on doxy 2-800 mg per day for about 2 weeks, peripheral neuro symptoms have subsided...by that I mean no more hypersensitivity of skin, no more tingling in hands feet.....not sure if it is due to the doxy tho....mental symptoms wax and wane as normal.....but are always there at some level.....cheast pain not as bad as before...comes and goes slight pain in cheast area....main problem is just this difficulty concentrating feels like my head will lock up when trying to concentrate...like a muscle that gets tense from flexing.....the ``tingling'' and tenseness of the brain is concentrated mainly in the lower rear of head.......
Doxy oral doesn't seem to be working.....going to switch to ceftin after my four week course of doxy has run.....
LLMD in Springfield, MO took blood sample, waiting on results....
Does the fact my lyme (probably) is concentrated on causing relatively mild cognitive symptoms account for the fact it seems to be resistant to oral doxy???? Am I being too impatient with the doxy? Will it work if I give it 8 weeks?
The lyme concentrates on causing these ``mild'' cognitive symptoms....therefore, does that mean I will only respond to IV abx?
Any help will be greatly appreciated.....After reading the posts and stories of people with chronic lyme, I feel very lucky to have caught it quite early, within 2 months or so of the bite.....and I am really hoping that it IS in fact lyme becuz if it is I know at least I have decent options for treatment and am on the right track.....I want to get this out of my system so I can get back on track with my life and we need to get the word out on lyme disease, I want to start another lyme discussion forum with lots of info.....and I am going to recommit to my goal of crusading for more medical research funding....we need to cure diseases,...not make better VIAGRA....doctors are often arrogant and incompetent and lazy and it makes me furious...others are wonderful, compassionate, and brilliant.....so it goes.....
Posts: 1 | From St. Louis, MO | Registered: Oct 2005
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posted
I let a arthritis doctor talk me into going on an arthritis drug that lowers your immunity. Within one month, I found a tick on me. A month later, I awoke and had mild slurred speech. Then swallowing difficulty started. I also had 9 mold antibodies in my system.
I will never take another drug that lowers my immunity.
Posts: 146 | From New Jersey | Registered: Jun 2005
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posted
As someone with a near (if not actual) genius level IQ, the most disturbing symptom was studying for a college test, and once it was placed in front of me, realizing I didn't remember ANYTHING I studied. It never came back to me. The test actually looked like it was written in another language. I couldn't make sense of the sentences in front of me. I burst into tears, and ran out of the room, scared of what was happening to me.
Another time, I went to stand up, and I dropped. I was paralized from the neck down. My ex husband acted like I was making it up for about half an hour, before he called 911 (see why he's my ex?). They had to carry me out in a coccoon. I ended up regaining some movement, except I couldn't move my neck for 3 days.
Another disturbing symptom was the pins and needles sensation from my knees down.
I also have light sensitivity, my hearing "turns off", pain in muscles and joints, hair loss, etc. etc. You know all that.
I was tested for Lyme Disease just as a fluke. I was in complete denial of the diagnosis at first... "I never saw a tick in my life!" until I started reading more about it, and realized I had almost ALL of the symptoms of Lyme Disease!
Posts: 37 | From Jamestown, NY | Registered: Oct 2005
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Rib Pain Right Knee Inflammation Sciatica in Left Leg from Tush to Big Toe Weakness in Left Leg/Foot Drop Light Sensitivity...I lived in Sunglasses All FOUR Seasons
Andrew Jernigan called from Wichita & led me to the Co.'s Site...I had ALL but 4 Symptoms! After all of those Wasted Years, he literally Saved My Life! He & Dr.P will always hold a special place in my Heart!!!
-------------------- ~Life's too short, eat dessert first Posts: 134 | From PA | Registered: May 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
MaFunk, I also had the experience of full paralysis as part of my first major herx.
I could think and speak but couldn't move any part of my body at all. It's happened twice. The first time, we called 911, and I was rushed via ambulance to the ER. They didn't know what to make of me.
It's the nearest I ever felt to dying. The second time, it was less scary. Both times, the paralysis lasted about 4.5 hours...then left me exhausted for the next few days.
Also, like you described, there was that whole memory thing. I used to write music and sing professionally. I was driving somewhere, listening to a new song. The lyric line was pretty simple, but despite playing that song over and over again, I could not remember the words. I'd try, fail, think: this is nuts. Go back to the beginning of the song and try again.
It seemed like an enormous victory last week, when the song came on, and I was actually able to sing along with it!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Up for Newbies.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I woke up one morning and both arms and legs were numb and a whole bunch of hair had fallen out all over my pillow. I was misdiagnosed with MS,a nd then with FMS for 17 years. What finally got me dx'd with Lyme was that I started having Rages, and that was totally out of character for me. Other FMS patients, who had found out they really had Lyme, had been telling me for years I might have it, but until my personality changed so drastically, I could not believe it. Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I was diagnosed with CFS, but when I started getting heart palpitations, severe anxiety, vision problems, join pains etc... I started to think it was something else. Then I found Lyme disease on the net' and basically diagnosed myself, I had literally 90% of the symptoms and I was one of the lucky ones who found a little tick a year before my illness. What a shame my doctors didn't pick up on this, my tick bite was all over their records because they removed it!!!!
Posts: 263 | From UK | Registered: Mar 2006
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posted
So many of the symptoms folks are mentioning sound familiar. My list: 1. occasional extreme fatigue (though now pretty constant) 2.odd transient feelings in my spine and neck (what I called a *buzzing* feeling and was one of my first symptoms) 3. awakening in the middle of the night with extreme heart palpitations (this was my first known symptom) 4. tingling in the jaw and face 5. occasional swallowing difficulties 6. neck creak every time I turn my head to the right (I still have this after 6 months of treatment) 7. mood issues including bouts of extreme irritability 8. bad headaches that don't get relieved with motrin 9. vertigo (mostly a few hours following exercise) 10. inability to exercise with out huge flares in all symptoms mentioned above. 11. light sensitivity 12. pin prickles all over my body
Posts: 98 | From cambridge ma | Registered: Oct 2005
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posted
"Night numbness." This is what I Googled after waking up in the midddle of the night on more than one occasion w/partial or total body numbness.
I'd had lots of other symptoms too, but like others, hadn't put them all together.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
Diagnosed with CFIDS/FM 5+ years. Tried many treatments, mainly naturopathic and complementary. Still not better.
Went to FFC and got worse on their treatment. Dr. suspected Lyme.
Symptoms are mainly neuro and fatigue. Extreme brain fog, cognitive problems, memory, vision, sensitive to sound, light, people, vibes, muscle weakness, TMJ, sleep disorder. Does cancer count?
Posts: 873 | From WA | Registered: Dec 2005
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posted
I started getting grinding headaches about 3 months after I was bitten. Then I developed severe neck and back pain, numbness in fingers and toes, weight gain, hands and feet "falling asleep", constipation, problems with digestion, problems concentrating, difficulties with my memory, extreme fatigue, trouble sleeping, thyroid and menstrual problems, light sensitivity, sore feet, losing my balance etc.
posted
I'm Ignex CDC positive for Lyme. No coinfections have showed up yet.
The symptoms that finally made me look for Lyme were: persistent bilateral conjunctivitis, increasing fatigue, dizziness, then the squishy sore soles.
For years I had chemical hypersensitivities, tinnitus, ear pain, brain pain, teeth pain, paresthesias in my extremities.
An intense emotional stress flared my lyme to the new symptoms that led me to test for lyme.
I have a question about breasts and Lyme for anyone who wants a shot at an explanation. Recently I did Vitamin C IV's 50 gm every day x 3 days. Within an hour of completion I had diffuse bilateral breast pain that lasted for about 8 hours. No redness, warmth, rask. ANy ideas?
Posts: 211 | From NC | Registered: Dec 2005
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posted
Flu, swollen painful hands, cracking knee joints, strange rashes, itching, swelling in legs and pain in knees.
Posts: 67 | From UK | Registered: Jan 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Besides a bull's-eye rash, my first symptom was hip weakness. I couldn't hold myself up and couldn't walk at all.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Fibro, CFS, extreme fatigue!, weakness, sleep disorders, headaches, cognitive difficulties, odd/transient pain (usually left side), LOTS of my friends have it (we all hang out pretty much at eachothers' houses). A lot of my symptoms also turned out to be Disautonomia.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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I have had a lot of lyme symptoms, but to me, I thought the strangest ones were dizziness, my vision would "jump", and I had no depth perception.
-------------------- quote form Mother Theresa"God won't give me more then I can handle, sometimes I wish he didn't trust me so much." Posts: 20 | From Wisconsin | Registered: Jul 2006
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posted
Extreme fatigue that would come and go (once in several months). Also, I just switched my primary, and has been assigned to an intern kid whom I did not think much of at the beginning. The kid ran the Lyme test based on the fatigue. A 2nd/3d/4th (this was the 5th, actually) opinion never hurts.
Posts: 59 | From CA | Registered: Dec 2006
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posted
We really came in the back door with our recognition that Lyme disease was afoot.
Extreme itching, pin pricks, blue, red, and clear fibers on skin with black specs, cognitive dysfunction, extreme fatigue, and a big black cloud over our heads, helped us recognize that we had Morgellons.
After digging around and finding out that as many as 90% of those with Morgellons were test- ing positive for Lyme disease we sought and got that confirmation for us as well.
My wife and I now have no Morgellons symptoms and the Lyme has for the most part abated.
Blue Skies......John
Posts: 134 | From North Carolina | Registered: Sep 2004
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I had been not feeling like myself for a long time.
However, following Hurricane Katrina, the loss of my house, etc.
It was easy to dismiss fatigue and other symptoms as being stress related.
I took one Advil cold and sinus medicine a day...for at least 2 years due to chronic sinus issues.
It was in July of last year that I started with significant hip pain and what I
Thought was "tender" soles of my feet.
In September, I was in Walmart when I began to feel as if I were going to pass out and couldn't
get a good breath of air...Called my husband and told him
Something is really wrong with me.
Symptoms started increasing with joint pain everywhere, fever, incredible fatigue, brain fog,
Short term memory issues, etc.
Googled symptoms. Came up with Lyme and Lupus.
Did a lyme disease symptom list and had 54 out of the 75 symptoms listed.
I knew I didn't have Lupus (negative ana), so it had to be....Lyme.
Then my quest to find a duck to even draw a Western Blot began.
Only test that ever came back positive for me
Other than EBV...was Western Blot and that
Was only one band (IgM 23)...I am just glad that
Quest dx. found that one!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Thought I had it, due to bull's eye rash, but Quest Labs tests came back negative.
Then vertigo and increasing brain fog and tiredness.
The one that got me was tinnitus that turned on overnight--one day fine, the next like a washing machine in my ear!
It was about 6 months after that when I got the Lyme information, got some better tests done (Bowen Research and then IGenX), which were both positive.
Love,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
This has been an interesting thread to read, Bea. Thx for keepimg it going!
I first went online to inquire about a lipoma(fatty tissue tumor) that began developing in my thigh 2 and 1/2 years ago.
Then there was a fire next to me and I went over-the-top chemically sensitive from exposure to the petrochemical fumes. I asked on a lumps site if anyone knew what that meant. A nurse in Virgina told me online that all the symptoms I was describing sounded like Lyme disease and did I remember any tickbite.
Answer: yes, in my foot in 1981. I had no symptoms at the time. They started three months later, with shoulder soreness, followed by stiff neck and then full-blown muscle pain that was called fibromyalgia and no one knew what that was. 50 odd symptoms followed, but I never knew they were all connected.
[ 19. April 2007, 06:06 PM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
First thing, my hand swelled up one morning. I woke up another morning with the white of my eye swollen up beyond my iris (weird). A few months later, it was hard to squeeze my hands. My right
ribcage hurt. Then I was getting numbness in the right side of my face. One of my knees hurt-I couldn't bend it, but the next day it was the other knee. I had pain in my big toe for a day
or two. Then the palpitations and brain fog started. I developed practically every symptom on the list. But the doctors still said that it couldn't be lyme. Unbelievable. I've had many
negative tests, but have been positive only on the Igenex Western Blot and Central Florida Research Flow Cytometry.
Posts: 418 | From NJ | Registered: Sep 2007
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posted
I could give you a list a mile long, but the one that finally made me look for an LLMD was hyperacusis (super- sensitive hearing).
That and the fact that my mother kept saying "You are acting just like your brother did when he had lyme 15 years ago..."
Posts: 237 | From WV | Registered: Mar 2007
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posted
Aside from the EM rash that my doc said was nothing to worry about, and the bell's palsy that I thought was caused by sleeping on my face wrong (you can't make this S$#T up-hehehe)... Ten years passed...
I lactated for a week, then a week later I had a horrible episode when I thought I was either having a stoke or a heart attack. I broke out in a rash on the right side of my body, had double vision, strong heart palpitations, spasms in my lower abs, and a pressure headache that I thought would cause my eyes to pop out of my head.
Since that day my hearing and vision have never been the same despite 10 weeks of IV tx, and 4 months of orals so far.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Likely my first symptom was vertigo 12 years ago, or maybe anxiety at age 6.
But what made me seek help was after having cortisone shots in 2006 to an intensly painful shoulder blade which caused and explosion of bodywide pain and up to 45 symptoms that followed.
posted
My first symptom was severe back pain in July 2005. After a short course treatment of prednisone I was twitching body wide.
I had enlarged lymph nodes, GI problems, cardiac issues, etc.,
It took me one year and twenty physicians before one of them suggested a simple blood test for lyme.
Sure enough I was CDC positive. I'm still treating with antibiotics 22 months later. I am at 90% recovered.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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bettyg
Unregistered
posted
EDITING to add:
besides the EXTREME FATIGUE, i really suffered for 38 years with EXTREME sensitivities to:
lights, glare, and reflection ... co-workers had to have many of their lights off to make it tolerable for me; painted lightbulbs, etc; and hood over my cubible taped down to not allow ANY LIGHT IN!
noise/sounds ... so painful to my ears! some non-stop printers running spreadsheets galore without a door on; i requested doors be put on there; the copier/fax room; and between a large open area with 20-30 employees in, and me. their chatter distracted my typing of legal agreements tremendously.
SMELL..never could stand smell of cigarettes and on people's clothing; perfume/colognes, hair spray; perms, after shave, cleaning products especially bathrooms being cleaned at night; office supplies...heavy duty markers and WHITE OUT for typing mistakes, etc; foreign foods; deisel; spraying aerosol cans!; are the things coming to my mind now. and CHLORINE WATER, so heated pools/jacuzzi's were off limits!!
going to bathroom all the time; peeing 20-30 times daily and having 10-20 BMs daily!!
rash on my arms from heated pools/jacuzzi; NON-STOP ITCHING causing them to bleed, and this rash going all over entire body!
always had painful periods and migraines; just didn't relate any of that to lyme which took 34 years to correctly get diagnosed.
having all 18 of 18 painful pressure points of fibromyalgia for almost 40 years now! ***********************************
the unusual thing for me was HOW i was bitten! it was a TICK OFF MY FOLK'S LIVE CHRISTMAS TREE IN 1969!! never saw it; never had a bulls-eye rash, etc.
that was my "mono" dx! since i kept a journal from age 13 on; that's how i narrowed it down to this!
i lived away from home; my roommates did NOT plants; it was SUB-ZERO IOWA WEATHER so no gardening was done and I was NOT a gardner then! so that's my story, and i'm sticking with it! Bettyg
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posted
My daughter began having a daily migraine that turned into an intractable headache. She also had her left eye droop so bad, three doctors thought she had been stung by something. She was hospitalized and had a lumbar puncture for lyme, but it was negative. About 6 months later she had the flu and was violently ill. I took her to a new doctor for that and he referred us to someone who specialized in lyme. Then she was tested by Igenex and had a positive blot and PCR.
My daughter had been sick for years before the headache with abdominal problems, insomnia, and joint pain. Her sed rates are always normal, as was everything else--so it was---you guessed it--DEPRESSION!
One of the wierdest things that happened before she was diagnosed is that she did not pee for about three days. I did not realize it the first day. She said something the second day( she was 13 at the time) like "I didn't pee yesterday." I took her to a duck that told me she would have been "like a potato chip" if she had really not peed in 24 hours. I managed to get her a saline IV the morning of the 3rd day(can't say how). Got her home and she began vomiting. Went to the ER, another duck thought we were crazy, but gave her another IV and ran x-ray, blood test, and anything he thought might help. She finally peed the smallest amount she could get out and it was very concentrated. The duck said he thought she was constipated high in the colon and to use glycerine suppositories the next morning. Before we could use them, she had diarrhea the next day. She finally made it through that ordeal, but we never understood it.
She still has intractable headache. We are treating for babs for 3rd time. If anyone has any ideas, I'm all ears.
Posts: 177 | From God's Grace | Registered: Apr 2007
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posted
how about a body full of super-sized EM's that I was told were "hives of unknown origin" and family doc put me on Prozac to help me get the stress out of my life.
On top of those EM's: sore throat, choking, fever, swollen neck, chronic fatigue, swollen painful joints....oh that list is over a mile long
It took me 15 years and 17 doctors later to finally self diagnose myself.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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posted
My first time around (in 1993), I lost 25 pounds. One on the ball doctor at Rutgers University Health Center connected my fatigue and weight loss with Lyme Disease. I am ever so thankful to her!!!
After all, who thinks about fatigue in college -- 18 credits, fraternity, varsity sports, couple of jobs, a few parties.... who isn't tired? Shoulda made the connection with my grades dropping, but I thought it was the fraternity.
.....
This time around, I nearly passed out while standing watching a presentation at work. Didn't think much of it, until it happened again.
Later on, I connected it with the years of insomnia, intermittent dizziness, and other oddities that had happened since my first round. If only foresight were 20/20 instead of hindsight! Posts: 168 | From Delaware | Registered: Aug 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I was bit at around the age of 14 (10 years ago). Saw the tick on my arm, embedded. At the time, didn't think anything of it. Just pulled it out and that was that. My family took in a dog that had dozens upon dozens of ticks, which ended up filling our house with them. I remember walking in the kitchen with shoes on and hearing "pop"s from stepping on them and looking down and blood on the linoleum. I only saw one bite, but I could have had more elsehwere and never known.
Never saw a bulls-eye but did have problems later with "excema". Not sure if that's what it really was or not. Don't have the "excema" anymore though.
During high school had headaches every single day. They got so bad that I started thinking I had a brain tumor. Went to a 'duck' about it and all she told me was to take 4 ibuprofen for it. Great, thanks!!!
Then developed IBS out of nowhere. And then after college, it went away on its own. Still confusing that it actually just got better and left.
Also during college started having tachycardia and palpitations. The palpitations got really bad. At one point at work they were so bad they lasted for over 30 or so minutes (not exactly sure how long) and it almost ended in me fainting from not being able to get a breath in.
Ended in me having multiple heart tests which came back and still have come back normal.
Then started having shortness of breath, hot flashes, chills, dizziness, and feeling like I am going to faint. I even fainted once (after church) in front of many people and blacked out another time.
Then just last year 2007, is when I got so very ill I ended up in the ER. Felt very strange, off, weird, very dizzy, spacey, feeling like I may die, loss of appetite, nauseated, etc. Duck diagnosed me with sinus infection just because I was having headaches and would have sinus-like headpain and pressure when bending over or talking, etc.
Levaquin that was given to me made me sooooooo much sicker and ended up in ER the next night.
Continued feeling so awful like I may die, and no doctor being able to help, typed in my symptoms in Google and Lyme came up.
It's sad when Google can diagnose a person properly while a duck has no clue or acts as if they have no clue.
PS - Forgot to add that I started having joint stiffness in knees and elbows and even fingers, blurry vision, jump a mile at noises (that weren't even really loud), etc. So many more symptoms, too many to list!
posted
Mine started out as inguinal pain that shifted from left to right rather randomly. Kept me from being able to sit down. Thought I had pudendal nerve entrapment for awhile. This lasted a year until other more common symptoms began to develop.
Posts: 129 | From Virginia | Registered: Feb 2008
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posted
Mine started as bad headaches,cramps in legs which then progressed to severe nerve pain in underarms and arms,numbness in toe and panic attacks.
I was functioning fine until June 07 but when the nerve pain and numbness began I knew something was drastically wrong.
Went to a bunch of ducks all summer and was then diagnosed with Lyme in Oct. 07 by LLMD.
I have no idea how long ago I was bit and how long this was dormant in my system...
Feel much worse now then when first diagnosed!
Laurie
Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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posted
Initially - night sweats and itchy skin (no apparent rash), after about one of year of this, my C-6/7 cervical disc herniated...then about 6 months after that the &$#*&&# hit the fan:
Muscle twitches everywhere, balance way off, took all my concentration to walk, numbness in extremities, face, and tongue, tremors all over - like all nerves vibrating, random stabbing pains, hyperacusis (felt like 1 month old baby's startle reflex), sudden onset high BP, hyperreflexia, propensity to get static shocked, heart palps, Raynaud's Phenomenon...
Hmmm....I'm sure there's more. 3 years searching for answers, doc visits, MRI's, valium rx's, ducks telling me, "you look healthy"...you know the story, the usual "Lyme patient poster child."
Now 2.5 months on orals, hoping to find relief. Tested IGeneX + (not CDC +) for Lyme, Bartonella, Babesia and Ehrlichia.
[ 13. May 2008, 09:42 AM: Message edited by: tickssuck ]
Posts: 566 | From West Coast | Registered: May 2008
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posted
WOW, Just amazing to hear others who have been through this same nightmare! I take comfort that people do get better and perhaps far more do than we ever hear about?
First symptoms? They were tolerable but strange...night sweats, drooping upper eyelid, flushed feeling, cracking/stiff neck, GI problems, twitching and tired beyond words - just attributed to being out of shape or diet but could still function!
This went on for several years until stabbing pains in extremities, followed by the all-too familiar burning in hands/feet. This sent me to the doctors who could NOT figure it out.
Recently diagnosed with Lyme, clearly in my nervous system, don't know if CNS and/or PNS...I have removed the ticks and have many risk-factors. Test was equivocal but the symptoms support it after ruling out just about everything else.
Hoping forthcoming treatment turns this around, if even slowly? This 'herx' talk is scary but certainly an acceptable trade-off for improvement!
Hang in there everybody, there must be a happy ending MBB3
[ 12. May 2008, 11:42 PM: Message edited by: MBB3 ]
Posts: 247 | From The Country | Registered: Oct 2007
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