posted
Besides the obvious -- tickbite or rash or Bell's Palsy -- What strange and unusual symptom led to your Lyme diagnosis?
We all know that Lyme is a multi-systemic illness. Some of us have learned that the hard way.
My hubby spent 1 1/2 years looking for the cause of his nausea/vomiting/dry heaves and tremors. A friend just emailed me that one of her early unexplained symptoms was a "frozen shoulder". beach4so mentioned a high sed rate in another thread -- thanks Starr.
What about you -- I am sure there are more strange symptoms out there that weren't initially recognized as Lyme disease symptoms.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My daughter had Lyme for 14 years before I finally figured out what it was so she has had most all of the symptoms at one time or another.
Had to nearly threaten a duck with her life to get her to do a WB on her. No really, she was actually pretty cooperative. After the positive test came back she said she didn't have time to learn about Lyme.
All the symptoms seemed odd, they just showed up for no reason one at a time from age 10.
ICEY
Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Burning and numbness on the front of my left leg, from hip to knee. Not sciatica, another nerve... I want to say femoral, not sure. I was told that this would be the one symptom that would not resolve with treatment. It did but comes and goes.
Arthritis in right foot, hip and shoulder. The shoulder felt like it dislocated sitting in a movie theater. The A/C joint was shot, I didn't see an x-ray until a year after diagnosis and it freaked me out.
Sleep Disturbances - my worst enemy.
Posts: 3783 | From somewhere other than here | Registered: May 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Burning, sparking, creeping, crawling nerves all over my body. That was a main symptom....that caused me to see 4 neurologists who didn't have a clue what was happening to me. (Actually, I told the last neuro I thought it was lyme, and he rolled his eyes at me, and would not consider it)
My first symptoms were extreme dizziness, rapid heartrate (that lasted for 45 minutes) and a 30 hour bout of extreme fatigue that repeated itself twice thereafter.
Since it took me a year and a half to get a diagnosis, I ended up with about every lyme symptom one can have.
posted
I had an elevated sed rate (and still do). It's anywhere from in the 60's to 110. Along with pain between the shoulder blades and into the shoulder.
Posts: 109 | From MN | Registered: Apr 2005
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posted
3 July, 2001 at 1 pm, I was just starting a cleaning job and was hit with shakes, hot/cold tremors, and a headache that literally had me on my knees. That night I had the first of the night sweats. A smart doctor tested me for babesiosis. The Lyme had been tooling around for years without my knowing - it was the babs that did me in. love dharma
Posts: 731 | From NH | Registered: Jan 2002
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
For me, it was my right foot going numb whenever I walked any distance at all. I would often have to just sit down and wait for someone to come back for me.
Dx with tendonitis, shot up with cortisone. MRIed, Xrayed, only getting worse. Suspected bladder and endometrial cancer.
I'd had a bunch of other symptoms over the 9 years my Lyme disease went undiagnosed; the numbness was the one that got my attention.
I was actually lead to the possibility of Lyme by my acupuncturist. Smart woman!
Andie
[ 07. October 2005, 12:16 AM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Multiple Chemical Sensitivity TREMENDOUSLY BAD>>>in fact almost life threatening.
Besides that...twiching muscles, sinuses, pleuresy, bronchitis...on and on.....
Trout
Posts: 5262 | From North East Iowa | Registered: Sep 2002
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posted
For my 14-year-old daughter, it was constant visual disturbances: seeing shimmering, white lights 24/7, visual trails, after images, flashes of color, floaters, etc. After several months, she also developed auditory disturbances, including tinnitis and hyper sensitivity to sound.
Other symptoms included fatigue, dysregulation of her autonomic nervous system (low blood pressure, rapid heart beat, and difficulty regulating her body temperature). More common Lyme symptoms include pain in neck and upper back.
posted
Wow my seven year old has the vision isssue. Several doctors and eye specialist have just said some children just see vision anomalies. Lyme disease sounds like a much more sppropriate answer.
My strange syptom was recurring meningitis going on 13 times now since July 2004.
I discovered lyme as a possible cause after two months of strong antivirals that didn't help. The only other possible cause was tumor or a worm like paristie that infects the brain. Not sure which diagnosis is the best but hoping treatment will mean I don't ever have to experience meningitis again.
posted
Tinnitus, tingling and numbness in extremeties, extreme fatigue, no stamina, shin splints, motion sickness, dizziness, strange transient sensation along my spine.
Had many symptoms for years and went to the doctor for some and wrote off others as old age or whatever. What made me think that it might be Lyme was the extreme fatigue, motion sickness, and couldn't sleep because hands and feet were resting on pins and needles. I was one of the lucky ones, after only two ducks telling me it wasn't lyme and refusing to even test me I found an LLMD and got tested.
Posts: 649 | From United States | Registered: Dec 2003
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I had alot of symptoms....... but never put it together.
A freind of my family sent me the checklist. That's when I knew Lyme was my problem.
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
A widespread feeling of nerve irritation throughout the body that left my skin feeling irritated all over.
This has improved a great deal with treatment, but I still feel that nerve irritation feeling sometimes - especially when I am frightened suddenly and have a rush of adrenalin. It is so weird.
Posts: 173 | From Lakeland, FL 33813 | Registered: Aug 2003
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
A Summertime Flu?
I would always get that in winter.
Also,my thighs felt like concrete and ached.Put a whole new meaning to thunder thighs.Going upstairs was a killer.
Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
woke up May 5, 2000 with all over muscle twitching. Got onto Google, typed in "twitching" and got Lyme and MS & ALS.
Remembered my tick bite from 1987 (13 years earlier) but had negative Lyme test at that time (but had severe knee pain after the bite).
Both boys had vague beginning symptoms. Oldest son started getting headaches in 2nd grade, which progressed to being daily headaches after 3 yrs of intermittent type h/a's.
Youngest son woke up the day before his 5th birthday (Aug. 27th, 1997) and couldn't walk! His right knee was so painful, he got up out of bed (in Lake Tahoe mind you)and fell down on the floor. We were due to leave the next day. I simply could not believe that his knee hurt him so bad that he said he could only crawl on the floor to get from room to room.
It breaks my heart. My mothers heart aches that this has been my children's childhood.
I was a nature girl, loving this Northern CA landscape. But no more. I'm in, probably for good. Hoping to move to Paris permanently when the youngest is 18 in 5 yrs so I can love the city I live in.
So, for me, muscle twitching, for oldest son, headaches that progressed to daily ones, youngest son, severe, sudden onset knee joint pain.
Julie
Posts: 1027 | From Northern CA | Registered: May 2001
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Not sweating and looking anorexic. There were a zillion and one other symptoms, but they could be explained under FM and CFS. Never met anyone who didn't sweat, that is until I came here.
[This message has been edited by Jellybelly (edited 19 August 2005).]
mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
For me...last week of school (I'm a teacher) my fingers swelled up and my hands started to ache. Then my forearms started to hurt like tendonitis. Then, and this is the best one, my ankles swelled, and my heel and foot hurt so badly that I couldn't walk on it!
My daughter...she would lie in bed for hours unable to go to sleep. No symptoms during the day other than really tired from not sleeping. Also, she only got a period ever 3-4 months.
My husband...had every symptom under the sun. Some odd ones are TMJ, sleep apnea, mitral valve prolapse, etc. etc. etc. etc. etc.
Jordan's symptoms were pretty normal - extreme fatigue, vomiting every morning, memory loss etc. etc. etc. etc. etc.
My oldest son has not been tested - as soon as he takes the dental school entrance exam we'll send him to the lab - don't want to stress him out right now. Just a week and a half to go! He's having a lot of trouble sleeping and some memory problems but I don't know how much to attribute to the intensive studying that he's doing. We'll see soon.
Thank goodness that my dog is healthy! Wally may outlive us all!!!
posted
Just Julie, I'm a Mom with questions about my kids too, would you be willing to chat by email? Posts: 25 | Registered: Aug 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
IN 2000, my hand swelled up and turned red. It was hot and very tender. I thought I might have broken my hand.
The first doc thought I an infection of some sort, and gave me steroids. The second doc decided to put my hand in a cast, just in case. **sigh**
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
quote:Originally posted by shazdancer: IN 2000, my hand swelled up and turned red. It was hot and very tender. I thought I might have broken my hand.
Ditto for me and the added carpel and tarsel tunnel syndrome in all four quadrants with me not having a job where this would be happening. Looked up those symptoms, and wala, this site came up.
Searched for three (3) years for what was making me sick.
You may want to just check out the Alligator Pit over in General as it has this pretty covered, I think.
Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
quote:Originally posted by HopeHelps: Just Julie, I'm a Mom with questions about my kids too, would you be willing to chat by email?
Sure, I'm at [email protected]. Both my kids haven't been on abx for almost 3 yrs now, and I've been off of abx for almost 2 yrs, so don't know how much help I can be!
Our LLMD is the famous S.F. one, though. I also have a husband who, while Lyme positive (by Igenex standards) has refused all but 3 months of 300mg/day of doxy. And that was over 3 yrs ago. Lovely. Julie
Posts: 1027 | From Northern CA | Registered: May 2001
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posted
I've had almost all of the symptoms on the list and then some.
I think the weirdest one, though, was the sensation that someone was pouring tepid water down my right leg. It felt so real that I was always compelled to look down at my leg, even though I was alone.
The other strange ones were the body vibrations, sudden onset of migraines at age 49, getting nauseous in shopping malls (due to the flourescent lights), sudden feeling like my head was going to implode. All that fun stuff.
The thing that made me serious about the Lyme diagnosis, though, was when the usual knee pain turned into crippling pain that made it almost impossible for me to walk. Kinda makes you sit up and take notice!
In elementary school I would stagger out of the exercise line while doing jumping jacks. Loss of Balance. Oh, the other one was I thought going under water (we snorkeled) had an interesting ringing sound, no kidding, I was that dumb. Today I had significant ringing in my ears.
You can imagine how symptomatic I was by time I got diagnosed at age 44!
The big tip off for me at 42 was a high ANA w/a Lupus dx that I questioned. A friend saved me w/the Bowen test.
posted
To all above: Just for grins and giggles try elimenating all foods and drinks that contain aspertane ( used in diet foods and drinks and is turning out to be a deadly poison). Yes lyme is a big issue, but get rid of manmade chemicals and foods in your diet. Such as veggie cooking oils, soy, and preservities. Use olive and coconut oils for cooking. Real lard and tallow are good also, if you can find them... These will boost the immune system..
Maybe this will help relieve some of the weird symptoms caused by lyme....
Remember: Drugs cannot replace the Immune system, they can only aid the system... The immune system is a living thing. It needs nutrients and proper food to keep it working... (Google "Dr. Mary Enig")
Good luck to all Tj
Posts: 192 | From Phoenix, AZ | Registered: Apr 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Chest pain & drenching night sweats.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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I can't imagine anyone using aspertame at this point . . . Ouch!
But why no soy? My LLMD has mentioned this before but I never followed why because I don't use it. HOWEVER, I just bought some soy milk and was looking forward to some Shaklee Protein Shakes.
[This message has been edited by Curley911 (edited 22 August 2005).]
posted
Four years ago I woke up with my whole body completely numb. I immediately went to the ER and the doc said to me what did you take?
An MRI was done which revealed a small white spot on the brain. Saw a neurologist who ran alot of tests..even a lubmar puncture to rule out MS.
Doing okay on and off never geting rid of neuro symptoms and baffled. Break my shoulder 12/03 and out of the blue start having ankle pain. Go to a podiatrist for a check up and he suggested PT and to do 2 steroid injections.
Two weeks later I woke up one and the inside of my knees hurt so bad and I progressively start getting worse. Body vibrating all the time and feeling like someones squeezing my arms and legs.
Two months goes by and I see a DO who is also alternative. She mentions lyme disease and I get on the internet and realize I have or have had 90% of symptoms. I Asked her to do a test from Igenex and she agrees. Positive test...finally diagnosed.
That's my story.
Posts: 738 | From Colorado | Registered: Oct 2004
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posted
Constant sweating. I never used to sweat. Needing to constantly stretch arms and legs followed by weakness in arms and legs. Difficulty expressing thoughts and stuttering. Trouble comprehending what others were saying to me. Also remembered having a bulls eye rash 11 months earlier after being bitten by a tick that I actually saw. Tested positive for lyme and bab WA-1.
[This message has been edited by desiree (edited 30 August 2005).]
Like many others my symptoms were a jigsaw that no-one had put together. Had so many symptoms for such a long time but it was the fatigue, knee pain and weird swollen tingling sensations in my hands that finally made the penny drop.
Posts: 229 | From United Kingdom | Registered: Jul 2005
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posted
Why I had a western blot igm & igg blood test for lyme by Igenex.
I was showing ALL the symptoms of EARLY-ONSET ALZHEIMER'S/dementia! My late sister-in-law died of this at age 40...yes 40!! I knew the symptoms only too well.
After getting both positive lyme diagnosis by IGX, it finally made sense why I had been misdx for 34 years.
In 1970, I got mononucleosis leading to chronic fatigue and later the unrelently pain diagnosed finally 13 yrs. ago!
I also had the SUPER SENSITITIVITY to lights, glare, & reflections plus NOISE/SOUNDS, and the many chemical smells.
Later came the irritatble bowel/bladder syndrome, TMJ, headaches, & the list goes on & on.
I hope after 35 years to finally be able to have some "quality" of life I haven't know in so many decades.
EDITING to add:
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
[ 08. April 2008, 12:09 AM: Message edited by: bettyg ]
Posts: 1 | From US | Registered: Aug 2015
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posted
I too sweat like crazy. Years ago I would not sweat at all. In cross country we would run 15 miles up and down hills in ninety degree heat. Everyone else would be sweating buckets I would not sweat one drop. Anhidrosis is one of the symptoms that leads me to believe I have had Lyme for a very long time.
Posts: 649 | From United States | Registered: Dec 2003
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posted
After reading all of your replies, I am crying. I too have had a long road with Lyme. I was finally diagnosed two years ago and on abx for those two years. Apparently I have had it for possibly 20+ years. I got the symptoms off and on for those 20 years and over the years they all got closer and closer together. I really took notice when I was getting terrible knee pain and it progressed from there to hips, shoulders, neck etc. I have those damn tingling sensations on my legs as well. UGH! I keep looking down to see how many spiders are crawling on me. Difficulty focussing on a subject and fumbling with my words, ears ringing and hurting, migraines, pelvic pain, floaters, light and sound sensitivity... I say my prayers everyday that I will get better as I have two very active little boys 6 and 4 and I had to quit my job as a personal trainer because of this awful illness. I have started to see a naturalpath also and we are working on joining the conventional medicine with some more of a nbatural approach ie change in diet and herbal supps. Take care everyone. Nancy Posts: 11 | From East Lyme, CT | Registered: May 2005
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posted
For Jordan it must migrating joint pain. His left hip would be so painful that he could hardly work. The next day, the pain would be in his right hip.
Jordan's weirdest unexplained symptom is paper sensitivity. His body reacts to the touch or sound of paper similar to how people react to fingernails on the chalkboard.
He is OK with coated paper like magazines and newspapers are the worst.
posted
I had lots of symptoms but no idea of Lyme disease so neither me nor my ducks ever made the connection.
Only when I got mastitis (inflammation of the mammary gland) and my gyn suspected an inflammatory breast cancer, I panicked and started to google and came up with a connection to Lyme. I found the lyme checklist und suddenly everything fitted in the picture. So it was a very rare symptom which finally brought me to the right diagnose.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Ok I was going to say there was no one symptom that called my attention... but what prompted a positive was the neurologist running a battery of tests to find out why I had complete loss of strentgh on my left side after an auto accident..
which I seemed to be in so many for my age.. 11 and only one was my fault and under the reportable amount of damage(859.00).. the other 10 were someone elses fault all damage was over 2,100.00 per incident) but the one in 1995 set my health in a onward spiral down. not just my back but my whole entire body was from then on, over ridden with infection and illness..
when I was seeking help form a well known hospital in PA, at first they appeared to be supportive, then they stopped and started making comments about my being too young to have all this worng with me ,, that I need to be positive and I will feel better...
I began to look elsewhere for answers some doctors found what this hospital missed and others would turn me out ..I never understood why until in 2003 I requested all my medical charts from this hospital.. there was a note that I had a "personality pathology" on one and notes on my active records were to "call this number before treating patient." I can only imagine what these doctors were told upon calling...
I would say that my left side weakness was the reason why I found out.. but total decline in health was there for years prior to this..
-------------------- "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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lymeloco
Unregistered
posted
All I know, is as a child I had many throat,ear and kidney problems. Very difficulty focusing!
Don't laugh, but I remember having my eyes tested at school in first grade, and telling them I saw molecules. Junior high, had bad stiff neck.
Cramps in my legs at 17. In my late twenties I fell on the floor when I went to get up to get my baby in the a.m.. Thought my leg had gone to sleep.
Early thirty's one morning after having a minor surgery, literally could not lift my head. My husband at the time had to lift me off the pillow. Lasted 24 hrs.. Hospital doped me up big time!
I also had severe ear pain that would come on out of now where! I could've put my foot or fist through something it was so bad!
I was told t.m.j. and have been wearing a nightguard ever since. I also have a dual bite.
I had a cyst removed from my wrist from over use,and as they were wheeling me out of the o.r. I asked the doc if I was supposed to feel funny. He said why, do you feel funny?
I kept hearing people calling my name, telling me to move my fingers,open my eyes or whatever I could do, but I couldn't. I was told I fainted.
In my thirties and fourty's lots of sinus infections, and one time had walking pneumonia.
The vibrations on the mini vans getting the kids off of them, would mess me up so bad.
I never thought anything about all of this until almost six years ago, when a fellow worker and friend saw me lose my balance. I thought, old age. Then at school putting papers in the kids cubbies, I started shaking, and the teacher I worked with said are you alright?
I told her I was fine, but she wouldn't believe me and asked the parent volunteer at the time to watch the class while she brought me to the nurse.
Severe high blood pressure, slurred speech, pins and needles, balance, and then my memory and cognitive went totally downhill.
Was taken many times from work to e.r. with breathing problems, high blood pressure, even after they gave me h.b. pills.
Were all those signs of lyme as a child way back when? I don't think we'll ever know! I do believe definately my immune system was compromised.
I also had trouble with fine motor. Three times with uncontrollable laughter.
Doctor after doctor, test after test. Finally an mri showed white spots. Had lumbar punture, and they lost the last part of the test.
Kept me at the hospital thinking it was a stroke. Finally a guardian angel said I think you have lyme. I didn't believe her, but she insisted that I see a doctor her brother saw for lyme.
After three tests neg. western blot also. Was put on antibiotics and later tested positive by an llmd.
My doctors here didn't believe it was lyme. Checked me for H.I.V., M.S. I've been through it all!
I hope you guys don't mind me writing so much, but it feels good to vent.
As of right now, I am doing quite well.
Just inquisitive, but what birth order does everyone fall into? I'm the youngest out of four.
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
After briefly reading this post I can tuly say as others have of me that I must have been a poster child for lyme...only thing is all the doctors I saw did'nt see it that way...
I was in so much pain and despair that I was about to blow my brains out....but for the preachers words seemingly directed toward me.
When all els fails ask God... I did and two days later while vegin on the couch and channel surfing I landed on the discovery channel and Polly from Conecticut was describing her symptoms...sounded just like me.
I went in got the test and divine intervention I believe was at work again when it came back positive...
So no, no one symptom...but all the tests for all the other diagnosis I got were negative or normal....cept the western blot....
I thought that was the end of my problem...Huh... we all know how that worked out.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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2 weeks after tick bite I had severe pain in my ear and jaw, difiicultly remembering where I was going, light sensitivity and my arms didn't feel right. 3 1/2 weeks after the bite Bell's Palsy led to quick diagnosis but inadequate treatment.
I now beleive I have had Lyme most of my life. The unexplained symtoms I was plagued with have vanished with Lyme treatment. Those symptoms included: migraines, chemical sensitivities, knee pain, hand pain, numbness in arms, extreme sensitivity to heat and light, pain in back, hip & shoulders, brain fog... Hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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quote:I still feel that nerve irritation feeling sometimes - especially when I am frightened suddenly and have a rush of adrenalin. It is so weird. [/QB]
I know exactly what you mean; around the time I first noticed weird symptoms (mostly muscle twitching and nerve pain), I was driving alone and almost hit a deer, and the adrenaline rush manifested itself in this bizarre nerve pain shooting through my arms. I had never felt anything like it and have not seen anything about it on lymenet until now- thanks for putting one more notch in the "I know I have lyme" belt.
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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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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