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
Posted by BJG (Member # 4723) on :
Hi Skin burning and twitching.
Peace, BJG
Posted by newdurham77 (Member # 7815) on :
chest pains, bell's palsy, numbess and &tingling, panick attacks....
Posted by ICEiam (Member # 7519) on :
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
Posted by trueblue (Member # 7348) on :
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.
Posted by timaca (Member # 6911) on :
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.
I had a complete loss of bladder control. I did an internet search and 2 diseases came up: Prostate Cancer & Lyme Disease.
Posted by NUTBOBUTT (Member # 7242) on :
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.
Posted by SAK (Member # 7387) on :
Unfortunately, it took losing part of my mobility after almost 20 years of the bite to question the 'it might be MS dx.'
------------------ Bye for now, SAK
Posted by dharmacleaning (Member # 2114) on :
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
Posted by Andie333 (Member # 7370) on :
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 ]
Posted by troutscout (Member # 3121) on :
Multiple Chemical Sensitivity TREMENDOUSLY BAD>>>in fact almost life threatening.
Besides that...twiching muscles, sinuses, pleuresy, bronchitis...on and on.....
Trout
Posted by lesley1954 (Member # 7626) on :
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 by niki (Member # 7720) on :
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 by duke77 (Member # 5051) on :
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.
Posted by HEATHERKISS (Member # 6789) on :
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.
Posted by skimpbiz (Member # 4433) on :
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.
Posted by 3greatkids (Member # 3838) on :
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.
Posted by Just Julie (Member # 1119) on :
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
Posted by Jellybelly (Member # 7142) on :
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).]
Posted by mbroderick (Member # 5220) on :
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 by HopeHelps (Member # 7781) on :
Just Julie, I'm a Mom with questions about my kids too, would you be willing to chat by email? Posted by shazdancer (Member # 1436) on :
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**
Posted by rosesisland2000 (Member # 2001) on :
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.
Rosemary
Posted by Just Julie (Member # 1119) on :
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
Posted by Squeegee (Member # 7219) on :
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!
Posted by Michelle M (Member # 7200) on :
Nonstop migraines. Of the "I am dying of a brain tumour" variety.
Jumping out of my skin at loud noises. (DX'd with "anxiety" and put on antidepressant.)
Periods abruptly stopped. Developed hypothroid problem.
May never have figured it out but for a very smart radiologist who read my brain MRI and said 'multiple lesions consistent with lyme disease.'
Bless that man!
Michelle
Posted by Curley911 (Member # 2205) on :
I love your question and this thread!
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 by Tj33 (Member # 7214) on :
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
Posted by Foggy (Member # 1584) on :
Chest pain & drenching night sweats.
Posted by Curley911 (Member # 2205) on :
TJ33,
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 by snowboarder (Member # 6346) on :
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.
Posted by seibertneurolyme (Member # 6416) on :
Thanks to everyone who responded -- I don't think any 2 answers were the same. Reading this sure gives meaning to the term multi-systemic.
Niki -- Maybe you should think about having your 7 year old tested for Lyme etc.
Lesley1954 -- Welcome to LymeNet.
How about it -- Are there any more strange and unususal symptoms out there?
Bea Seibert
Posted by AlisonP (Member # 7771) on :
I'm still waiting for a diagnosis . . .
But it was just one post on one forum that I read. Before that I was totally clueless. One little post on curezone.com that read:
"Fibromyalgia/CFS may be Lyme"
I owe whoever posted that more than I could possibly say.
Alison
Posted by Andie333 (Member # 7370) on :
Reading everyone's posts makes me think of the pols' and ducks' assertion that "Lyme disease is easy to diagnose and easy to treat..."
...right...
Posted by jimsmissy (Member # 7796) on :
cardiac arrest was the first sign I had. Then 4 days of v tach and v fib
Posted by niki (Member # 7720) on :
Ordered the testing kits from Igeenix last week!
I had no idea the no sweating was from lyme!
Posted by desiree (Member # 7226) on :
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).]
Posted by millymollymandy (Member # 7703) on :
What a great thread this is!
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.
Posted by bg (Member # 46416) on :
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 ]
Posted by duke77 (Member # 5051) on :
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.
Posted by Nanbo (Member # 7382) on :
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
Posted by pab (Member # 904) on :
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 by seibertneurolyme (Member # 6416) on :
Up for Newbies.
Posted by Gabrielle (Member # 5329) on :
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
Posted by livinlyme (Member # 3773) on :
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..
Posted by lymeloco (Member # 7192) on :
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.
Posted by lymie tony z (Member # 5130) on :
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 Posted by hatsnscarfs (Member # 6562) on :
Great question!
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
Posted by jsnyde2 (Member # 7888) on :
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.
Posted by psano (Member # 7785) on :
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.
Posted by cgooge (Member # 7922) on :
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!!!
Posted by livinlyme (Member # 3773) on :
Keep us posted cgooge,, glad you will finally find some relief for your wife..
Posted by elle (Member # 7721) on :
quote:Originally posted by Gabrielle:
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.
Posted by lymex5&counting (Member # 7202) on :
Morgellons
Posted by DolphinLady (Member # 6275) on :
I'd wake up feeling like I was run over by a truck.
I was losing my memory and having a hard time finding words to express myself.
Everything took lots of effort even the smallest thing. When I had energy I'd do a little more and crash for days.
My neck was stiff.
I felt like I was deteriorating and slowly dying.
I had periods of disorientation and felt like I was going crazy.
My heart felt like it was doing summersaults in my chest.
Normal touch would cause me tremendous pain.
Limbs that would go numb.
Decreased ability to control bowels.
Trouble swallowing.
Running into walls.
Trouble going into stores because of over stimulation.
I'd wake up and feel like I just had a seizure. I'd remember seeing lights.
Just some of what I can remember at the moment.
[ 06. October 2005, 07:39 PM: Message edited by: DolphinLady ]
Posted by Shaunabhealthy (Member # 7189) on :
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 )
Posted by mike r (Member # 8043) on :
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.....
Posted by coach (Member # 7539) on :
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.
Posted by MaFunk (Member # 8019) on :
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!
Posted by Reno'sBack (Member # 7367) on :
Long Story Very Short...
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!!! Posted by Andie333 (Member # 7370) on :
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
Posted by seibertneurolyme (Member # 6416) on :
Up for Newbies.
Posted by klutzo (Member # 5701) on :
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
Posted by ChrisBtheLymie (Member # 8916) on :
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!!!!
Posted by nicolette (Member # 8133) on :
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
Posted by psano (Member # 7785) on :
"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.
Posted by seibertneurolyme (Member # 6416) on :
Up for Newbies.
Bea Seibert
Posted by hopeful4 (Member # 8486) on :
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?
Posted by AP (Member # 8430) on :
No rash, flu-like symptoms, history of tick bite or anything.
My right thumb went numb.
I've spiraled downhill from there, but all my tests (blood and CSF) came back psoitive, so I can't question it.
Posted by gwenb (Member # 7217) on :
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.
Headaches and weight gain were my first symptoms.
Gwen
Posted by mtnwoman (Member # 8385) on :
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?
Posted by seibertneurolyme (Member # 6416) on :
Up for Newbies.
Posted by LisaS (Member # 10581) on :
I had been to the Dr with almost all the lyme symptoms through the years. Not once did any of the drs I had gone to ever mention lyme. Then
about 6 months ago after my last diagnosis being carpal tunnel, I went back and told my doc that the numbness was moving to my foot. When I
drove it felt like my foot was on backwards and couldn't feel if I was pressing on teh gas pedal. It was like a light bulb went off, and
she said Oh My God, did you ever have a tick on you? A week later she called and said my Elisa and Western blot were positive for lyme. That
was 15 years after my initial symptoms. I was so excited to have a real diagnosis, little did I know my adventure was only just beginning!
Posted by sienna (Member # 10980) on :
Flu, swollen painful hands, cracking knee joints, strange rashes, itching, swelling in legs and pain in knees.
Posted by lymeladyinNY (Member # 10235) on :
Besides a bull's-eye rash, my first symptom was hip weakness. I couldn't hold myself up and couldn't walk at all.
Posted by motownlyme (Member # 11485) on :
Hyperacusis finally led me to getting a Lyme diagnosis.
Posted by EWT1638 (Member # 11315) on :
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.
Posted by AutumnDay (Member # 9532) on :
Hi,
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.
Posted by runcyclexcski (Member # 10749) on :
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.
Posted by jwf (Member # 6292) on :
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
Posted by Geneal (Member # 10375) on :
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
Posted by Cass A (Member # 11134) on :
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
Posted by Robin123 (Member # 9197) on :
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 ]
Posted by seibertneurolyme (Member # 6416) on :
Up for Newbies
Posted by amk33 (Member # 13206) on :
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.
Posted by motownlyme (Member # 11485) on :
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..."
Posted by Mtgirl (Member # 13278) on :
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.
Posted by lymebytes (Member # 11830) on :
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 by sfcharm (Member # 9392) on :
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
Posted by bettyg (Member # 6147) on :
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 Posted by Sparrow (Member # 11734) on :
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.
Posted by Gert (Member # 13584) on :
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.
Posted by InADaze (Member # 7711) on :
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! Posted by disturbedme (Member # 12346) on :
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!
[ 12. May 2008, 09:19 PM: Message edited by: disturbedme ]
Posted by hokie (Member # 14720) on :
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.
Posted by cookiegirl (Member # 15226) on :
exhaustion, swelling, weight gain, and pulsing leg pain following short course abx
Posted by laurie sm (Member # 14584) on :
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
Posted by tickssuck (Member # 15388) on :
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 ]
Posted by MBB3 (Member # 13459) on :
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 ]
Posted by seibertneurolyme (Member # 6416) on :
Up for Newbies.
Posted by Lauralyme (Member # 15021) on :
Initial symptoms were random and abrupt electric jolts all over my lower body. I just knew something was wrong with my CNS and pursued it.
Posted by steve1906 (Member # 16206) on :
Question=What strange symptom led you to Lyme diagnosis
High Blood Pressure - never have it before
High Cholesterol - Never had it before
Flu
Sinus infections
chest pains
Rash (sides of both lower legs, both elbows, and stomach
difficulty in thinking Forgetfulness, short term memory
Mood swings/ no patience Fatigue / hard to work - better
can't sleep
Decrease in balance - getting better Neck cracks, neck pain
migraines
These are all started within 4-5 weeks.
Steve
Posted by Starfall1969 (Member # 17353) on :
It wasn't any one symptom for me.
I just got hit out of the blue last summer with a host of really odd, seemingly unrelated symptoms:
Light-headedness, dizziness, numbness/weakness in my limbs, shortness of breath, panic attacks, visual disturbances (floaters, inability to focus, and most weird was a dilated right pupil),
fever and chills, shakiness, joint pain, neck and back pain, fatigue, olfactory hallucinations, clumsiness, ringing in ears, TMJ.
I could go on and on.
I'm still waiting for a diagnosis. I see an LLMD next month.
Posted by Dawnee (Member # 15089) on :
I'd already had heart palps, racing heart, fatigue, weak muscles. But what lead me to suspecting Lyme was all over muscle twitching (after suspecting MS due to L'hermittes sign, internal vibrating, tremor, tingling in extremities and WAY hyper reflexes). When I looked up muscle twitching it came up almost exclusively with ALS... which threw me into a major panic curled in the fetal position for months and had doctors calling me crazy. My father in law finally asked if I'd been tested for Lyme Disease and thus began my googling, and finally my CDC positive diagnosis.
My 15 yr old just got CDC positive also. Her symptoms being strange skin rashes and recent muscle twitching.
Posted by adamm (Member # 11910) on :
Brain rot
Posted by Nicole_Denise (Member # 20620) on :
So no one has posted here for a while, but I found this very interesting!!
For me- I had a bunch of symptoms of two years without putting two and two together.
It was when I woke up when day and felt like I had sprained my ankle, when I had done nothing that I started to look for something.
At first, I just connected my achilles tendonitis, shin splints, carpal tunnel, tennis elbow etc.
I got tested for Lupus, RA, etc., all came back negative, and I decided it was all in my head.
Then, I started having crazy vision problems, muscle twitches, and tingling. That's when I booked the appt with the LLMD. (ND actually)
My biggest road-block was that although I had fatigue, it was never so debilitating that I couldn't function.
And since I come from a family of hypochondriacs, I always think that I am being one myself.
It was only when I was filling out the medical history at the doctor's that I realized I couldn't be making this up.
Posted by gemofnj (Member # 15551) on :
The main symptom that led me to lyme was soreness under my arms (swollen lymph nodes) shortness of breath, chest pain and heart irregularities.
Had all these before my doctor tested me for lyme (at MY suggestion):
alcohol intolerance, fatigue, small/large joint pain, extreme sensitivity to all my senses, especially LOUD anything and bright lights, loss of memory, stuttering, confusion, inability to concentrate..
and I could go on forever! LOL
[ 06-12-2009, 10:10 AM: Message edited by: gemofnj ]
Posted by Kreynolds (Member # 15117) on :
The symptoms that led me to get my blood done and than get a CDC positive diagnosis were:
Dizzyness Brain Fog Really wierd ear problems( like couldn't hear) Legs really weak Vision problems
On June 25th,2007 I was perfectly fine, when I woke up the next morning and went to work at exactly 7:15 AM, those symptoms happened.
It scared the crap out of me. I was 21 and in really good health.
I was brought to the doctor and he ran blood. I was treated for an URI and sent home.
Was out of work for 3 days then the doc called me in and said that I had 7/10 bands Positive on the WB.
Two years later, after a + Spinal Tap and a Moderate-Severe SPECT scan along with Bartonella,Babesia, Mycoplasma and Lyme-Induced Addisons Disease, I am feeling no different.
My family and I have come far these 2 years. Started a support group and we just keep researching and educating ourselves.
Gotta keep your head up, right?
Posted by sutherngrl (Member # 16270) on :
I woke up one morning feeling achy like I had the flu. This led to one symptom after another, the worse one being extreme fatigue. Then one day I was reading the Canadian Lyme Foundations list of 75 Lyme Disease symptoms. I had 53 of them.
I was ill 2 years before getting a LD diagnosis.
I have learned so much about the medical industry and how you have to fight to get your health back.
Posted by seekhelp (Member # 15067) on :
Muscle weakness, severe fatigue, chills, hot flashes, muscle pain, panic attacks, eye issues, left sided weakness/bone pain, head pressure, off-balance feeling and more. Came on literally in 3 weeks and I've never been the same.
Posted by suel (Member # 8198) on :
In 2005 I had a sinus infection. I was put on Levaquin. I started having trouble walking, and starting getting numb, sweats and alot of sleepless nights. I must congratulate my MD who is not a LYMD it was the last test she took and she treated me for 6 months also IV treatment and I was doing great.Still had arthiritis. I am now positive again and battling Lyme for the last couple of months.Well as we all know for the rest of our lives. I have new symptons I did not have before. Creepy crawling, tingling and still seeing the same MD. We will see where we go from here. Good Health to all of us..
Posted by Wonko (Member # 18318) on :
After about a year into my undiagnosed illness that was expressed primarily in neuro symptoms, I took a prescribed course of oral steroids.
While temporarily relived of all symptoms, shortly (about a month) later, I was sicker than ever, with the addition of joint pain.
Knowing that a neurological condition could not suddenly manifest in the joints, but that an infection could, the light bulb finally went off, and I soon proceeded to seek out an LLMD.
Posted by lymeherx (Member # 17182) on :
For me and my sister that had symptoms 1 month before me,it was left-side complete numbness from head to toe She thought she had a stroke and then got a number of a LLMD that her friend told her about and then turned and told me. Turned out she had lyme and Rocky mountain spotted fever,went on antibiotics,and got better. A little strange that I had the same symptoms as her,and got better too! Don't ya think?????????? Posted by bettyg (Member # 6147) on :
thanks for bringing this up; good reading the latest newbies to reply here. xox
Posted by She R Lock (Member # 18823) on :
On 6/3/08 I discovered a strange looking OVAL rash on my chest. Didn't realize I was bit and the rash didn't itch and wasn't painful. I saw a similar rash on the CDC web page.
Went to my family doc and asked him if it was Lyme and he said in his professional opinion "No" and sent me home with a lotion.
The next week the rash expanded and I developed 2 more rounded rashes(one on each leg). I basically had to become my own doctor and researcher. I had a nurse practitioner in a dermatologist office confirm my diagnosis of Lyme 10 days after the initial rash. Those were crucial days, my treatment was delayed and inadequate.
I suffered from all kinds of symptoms typicial with Lyme and my first WB was positive for all 3 IGM bands.
The worst symptom was the constant 24 hour burning pain on my legs from the knees down. I am happy to report that I am much better. My legs felt like they were on fire for 6 months but that is gone. I still have swollen ankles and a few lingering symptoms but I'm almost my old self.
I've been educating neighbors and friends particularly about the rash. Education, prevention and the sooner the treatment the better.
Posted by blinkie (Member # 14470) on :
hypersensativity to mosquito botes. They would swell to the size of my fist.
It led me to CFS, which in turn, led me to the truth...lyme.
I also had deteriorating memory and fatigue.
Posted by blinkie (Member # 14470) on :
hypersensativity to mosquito bites. They would swell to the size of my fist.
It led me to CFS, which in turn, led me to the truth...lyme.
I also had deteriorating memory and fatigue.
Posted by xoxoxox (Member # 18778) on :
Insomnia-Hyperacusis-Tinnitus then the nerve pain and the cognitive issues added to the mix.
Posted by Cass A (Member # 11134) on :
Tinnitus that just started up out of the blue.
Other symptoms that I had which didn't lead me to Lyme were low body temperature, dysfunctional thyroid, fatigue, brain fog, vertigo, memory loss, short-term memory gone.
Best,
Cass A
Posted by peacemama (Member # 17666) on :
Random pains in my abdominal area, hip pain even after I got a better bed and most of all Blood Pressure of 50 over 28.
Posted by swachsler (Member # 18155) on :
i already had cfids, fibro, and mcs, so i missed the significance of most of my initial, acute symptoms.
however, i had never before had joint pain. thank god for the joint pain.
i mentioned it to my PCP, she said it was probably a new manifestation of my existing illnesses, but she would test for lyme and rheumatic diseases.
when she said, "Lyme," i remembered pulling that *thing* off the back of my neck a few weeks before and the big bug-bite it left behind.
I went home and looked under my hair. there was a red rash.
i researched lyme online and discovered a lot of the sx i'd been attributing to other thingsin the last few weeks -- new headaches, neck and shoulder pain/stiffness, vertigo,. . . -- weere lyme sx. i freaked and called the doc on call and demanded amoxi. (i'm allergic to tetracycline.)
so, while i did have the rash, i didn'tknow about it for quite a while because it was hidden under my hair, and i wouldn't have known any of the other sx were significant if i hadn't told my doc "joint pain" and she hadn't said "lyme" and i hadn't remembered the tick bite.
thank god for joint pain! it was only in my finger joints at that time. now it's in almost all of them.
-sharon
Posted by momlyme (Member # 27775) on :
What a great thread!
My son had flu-like symptoms followed by pain in knees and then pain in ankles.
Posted by bcb1200 (Member # 25745) on :
Wow..old thread. LIke that it is resurrected.
One thing I noticed...most of the people who were posting 2-3+ years ago are no longer here...so I assume they are well. Well people don't lurk on lymenet. They are out living their lives.
My story:
Between Nov 2009 and my dx on May 2010:
-Nausea -Sweating -Chills -IBS attacks -URQ (gallbladder) pain -Anxiety -Sore lower back and neck -malaise -brain fog -vision issues -stuffy ears -drunk / drugged feeling
then
-tinnitus -majorly stuffy ears -dizziness. Not vertigo, but like I was walking on a boat -Thigh pain -Calf pain -Visual disturbances (light patches in vision, waves, shimmering vision)
Then
-Fatigue -Chills -Flushing -Red ears
Went from my PCP, to a GI doc, to a chiropracter, to an ENT, to a TMJ dentist, to a neurologist and finally found my LLMD.
Posted by seekhelp (Member # 15067) on :
Not all of us.
quote:Originally posted by bcb1200:
One thing I noticed...most of the people who were posting 2-3+ years ago are no longer here...so I assume they are well. Well people don't lurk on lymenet. They are out living their lives.
Posted by SEREN J WEED (Member # 7280) on :
1995 1st...Bad Flu 2nd...Awoke to find out I couldn't sit up. The lower half of my body didn't function, I turned over and slid out.
3rd...Next day and for many many days after, I had to watch the other cars to know whether to stop on red or green. Also the movement of the cars caused my eyes to go crazy
Others... Walking down stairs were impossible, no perception. Twiching on eyelids and other areas, motor running feeling on different parts of my body.
Numbnesss, really bad neck and right shoulder pain. Lots and lots of others that are too many to write down.
Posted by rera2528 (Member # 29886) on :
bcb1200--I am waiting for my LLMD appointment, but your symptoms sound very similar to mine. Thank you for posting.
If I get a Lyme diagnosis, I will come back to post in this thread.
Posted by Haley (Member # 22008) on :
After many serious symptoms and many different doctors, I mentioned an odd sensation on my scalp. I was sure they would think I was a hypochondriac so I wasn't going to mention it. It seemed so unimportant compared to all of the other stuff.
That was the symptom that made a doctor say "hmmm, that makes me think of Lyme disease."
It took me 1 1/2 years to get that response.
Posted by BarrelKat (Member # 30329) on :
We had ticks so bad in Texas that I would step off the porch and be covered from knee to ankle. Think I got bitten?? that was 1990. Don't remember a classic flu/rash/etc-but then my memory is so bad...
several months later was diagnosed with Scarletina. I think that was actually possibly the beginning of my Lyme debacle.
Can't handle holding onto anything that vibrates.
Early onset osteoarthritis. (early 20s) Painful joints.
Memory and nuerological problems. Short term and long term memory loss that comes and goes. Memory fog that comes and goes.
The list goes on. Developed endometriosis, asthma, chemical sensitivities, light and noise sensitivities, etc etc etc.
Although I had suspected Lyme, I was tested once early on and told nope. At the time I was basically symptom free.
A friend many years later told me to push for further testing. He also had chronic Lyme, and had had to be tested repeatedly before getting a true positive diagnosis. My Dr., although he kept saying Fibromyalgia, agreed. He gave me a blank dated blood test and had me go in on my worst day. (I literally had to be carried from bed.) Came back positive. Although he was supportive, he did not do anything as far as treatment or research. Arthritis meds and painkillers.
On the hunt again as now I being told it's Fibromyalgia...
Posted by norcal (Member # 29829) on :
A weird symptom?... WHICH ONE? I did not read everyones posts.
One of the weird ones that comes to mind is knee buckling.
Felt like someone was kicking me at the back of the knee and your leg buckles.
Posted by seibertneurolyme (Member # 6416) on :
Back to the top for newbies.
Bea Seibert
Posted by Mama2six (Member # 38069) on :
Though not an unusual symptom for lyme, for me it was dizziness. The dizziness switched "on" like a light-switch one day, and it was incapacitating. It never lifted. (Ups and downs, but always "there".)
Here is the weird part. My dizziness is made worse (exponentially, as in I become "not" a person, more like a puddle on the ground) by noise, and it is also made worse by movement, especially left-right head movement. And the really weird part? It is only ONE ear that has the problem.
So, of course, we spent 8 months thinking it was an ear problem (SCDS), and then for the otologist and neurologist to bounce me back and forth before being diagnosed with lyme. (At the otologist's suspicion... at first I myself was doubtful, but he brought it up at 2 appointments. Thank you, Dr, for being thorough and thoughtful when nothing you are familiar with "fits"!
Posted by GretaM (Member # 40917) on :
Hemiplegic migraine lasting 44 days instead of an hour.
I lost the ability to speak, brain-wise and muscle-wise, and I kept forgetting where I was, had bells palsy on the left side, and left leg lost all reflexes.
I should clarify, it was my mom phoning me everyday telling me to keep looking that prompt me to seek out a lyme doc for an assessment.
And my coworkers having to find me at work-because I kept getting lost and wouldn't show up for lunch break.
Posted by Razzle (Member # 30398) on :
I didn't figure it out - a new Naturopath did.
But my symptoms started with wandering leg pains at age 5, which were blown off as "growing pains" though they persisted and I still get them now that I'm "over the hill."
I was bit at age 4 by a red fire ant in the California desert. 3 LLMD's and 2 LLND's have all said yes, red fire ants can carry and transmit Lyme...and then I found out red fire ants eat ticks!
So from age 5 until diagnosis (2007), I had seen over 100 doctors for a wide variety of seemingly unrelated issues.
Got lots of mis-diagnoses along the way, and when I started researching this stuff, I found I never quite "fit" the diseases with which I was diagnosed.
So I continued to search, question, and try to puzzle out what was going on, as my health deteriorated year after year after year.
Some of the strangest symptoms include:
Visual tracking problems. I have almost been run over by several vehicles when trying to cross a street. I simply cannot see the car coming sometimes...it is not there to my brain/eyes. I've also crashed into walls, posts, furniture, etc., for this same reason...always when I am walking.
The same issue is why I can't drive a car, or play fast action video games on the computer. My eyes stop processing moving objects, or don't process them correctly.
Couple that with my very slow reaction times, and it is a recipe for disaster if I'm driving, or a recipe for losing the computer game quickly...
Waking up and feeling like someone had their hands on my neck and were shaking me. The shaking was uncontrollable if I was relaxed, but would stop if I used my muscles in my neck/arms/head/torso. This lasted 10 days. Neuro didn't even LOOK at me, told me it was "essential tremor" and blew me off.
Went to church one Sunday morning. After service was over, stood up to leave the sanctuary, and felt like my legs had been replaced with someone else's legs... It was so, so hard to walk. And it felt like the ground wasn't where it looked like it was (I think my legs/feet coordination was way off, had to have help to walk or hold on to stuff to walk).
The sensation slowly faded over the next 24 hours. My PCP at the time yelled at me for not going to the ER, and then she scheduled me for an EEG (which was normal).
And the RSD/CRPS for 4 years that resolved "way too easily" with exercise/PT and never responded to any pain meds...(read: Bartonella/Lyme & who knows what other coinfections...).
So lots of misdiagnoses, tests for things I had symptom of but tests said I did not have, super high SED rate with no explanation, atypical "Lupus" diagnosis, osteoarthritis at age 25, low body temp. with normal thyroid tests, etc.
And the gut troubles...endless, ongoing, constant gut problems...always diagnosed as Crohn's Disease (and the usual "all in my head" or "depression"), but I knew that wasn't right intuitively - and my symptoms just didn't quite fit Crohn's.
So I am very thankful the Naturopath tested me through IGeneX "on a hunch." Finally my symptoms made sense!
[ 10-18-2013, 10:59 AM: Message edited by: Razzle ]
Posted by ookearaoo12 (Member # 41442) on :
The main one for me was my memory and constant brain fog. I've always been the time of person that people say I'm very "with it" mentally. Remember everything.
It was VERY scary for me to lose my mind.
There are some days when I can't think of the name of something so simple as "paper towels".
Scary.
Posted by surprise (Member # 34987) on :
I never sought help from a Dr. for symptoms except insomnia and anxiety, and was given antidepressants.
My memory issues I kept to myself and didn't share about it, but was extremely sensitive to it- just assumed I would have Alzheimer's for sure.
GI issues, ignored best I could. Lots of denial about myself. Put my mind to outside things for causation.
Found out about Lyme and co. through my young daughter, who had struggles since birth. She was diagnosed with PANDAS/ PANS,
other PANS Moms suggested I look for Lyme, I thought they were crazy. But they were correct.
Posted by linky123 (Member # 19974) on :
Came down with the 'flu' that never went away. Also, brain fog, severe headaches, muscle aches, anxiety, depression, sleep disturbances.
Took 19 years to get diagnosed.
Posted by nefferdun (Member # 20157) on :
How I got it is the most unusual thing because it was a wood tick, not a deer tick.
My eyes were so dry and sensitive to light that I had to wear sunglasses in the house. I had horrible back pain, migraines everyday and was so tired i could hardly walk.
I was online googling chronic fatigue and lyme kept popping up. It was rather annoying because I was trying to find out about chronic fatigue - what the heck is lyme anyway - I had been told many times by all the doctors I had been to, that we don't have it here in Montana.
Then I saw "There is Lyme in Montana". It was a newspaper article that had been posted in 2004; an interview with the state epidemiologist saying there was a "lyme like" infection being transmitted by wood ticks. That is how I found out.
So many sick people. This thread was started years before I was bitten. I am glad many of the people that posted on here, are not around any more - hopefully because they got better.
Posted by sparklyholiday (Member # 42456) on :
Aside from the hundreds of symptoms I'd suffered with for years...
The most recent symptom that sent me back to the doctor yet again, that led to my diagnosis was that I'd started losing my hair.
Posted by hopeful4 (Member # 8486) on :
Looking back, I'd like to add this to a previous post...
Two episodes come to mind. The first was that I suddenly saw bright flashing lights that were blinding. It lasted a short time and there was no pain at all.
I thought my retina had detached, and became very scared. Went to the ER and also a retina specialist. Was diagnosed with an "ocular migraine".
The second thing that happened was a short time later. I experienced excrutiating abdominal pain, ending up in the ER again. After many tests was diagnosed with a gall bladder problem, a very reduced "ejection fraction".
Once the gall bladder was removed, the pain never returned. I was told that I would be back to my normal activities within 3 weeks. That never happened.
That is when I had the onset of debilitating fatigue and cognitive difficulties which ended my working life. Diagnosed with Chronic Fatigue and Fibromyalgia.
It took 5 years to get the Lyme diagnosis.
Great thread! Amazing to hear what people have been through.
Best wishes.
Posted by dbpei (Member # 33574) on :
Interesting and 'old' thread! I head sudden and severe hearing loss in one ear followed by horrible tinnitus that sounded like a factory in my bad ear. Soon after, I developed fatigue, mood swings, and got a vibrating like sensation in my extremities (hands, feet and head).
Posted by randibear (Member # 11290) on :
the rash on my leg. it then progressed to insomnia, muscle twitching and tinnitus along with other symptoms.
no doctor would even take me seriously.
Posted by seibertneurolyme (Member # 6416) on :
Up for newbies.
Bea Seibert
Posted by lpkayak (Member # 5230) on :
Oh my...what a trip...i temember so many of the posters...cant believe i didnt post
Mine was mid back pain...it did go away with tx and rarely comes back...but i have plenty of newer sx...mostly neuro...thanks to 15 years without dx and tx
Posted by randibear (Member # 11290) on :
my hands and feet started changing colors. plus all the usual but migraines off the charts.
but the key was a perfect bullseye and the ole "spider bite diagnosis" that jusy didn't fit.
Posted by poppy (Member # 5355) on :
Swollen knee, strange pinpoint burning sensation on one place on my back only once in a while. But it was not until almost three years later when many other symptoms appeared that I finally got diagnosed.
Hardly any of the people who have posted on this thread are still on the forum. Where did they all go? All cured? Stopped being interested in lyme forums, although still sick? ??????
Posted by KimC (Member # 44257) on :
Waiting for my LLMD appointment on next Tuesday after my tests came back negative from the regular doctor. For years I have been getting sicker and my husband talked me into seeing a LLMD.
Worst symptom - pounding sinus headaches daily, especially upon waking and I have been checked a bazillion times with no sinus infections. OTC meds to not touch it. Now seeing a pain specialist - xrays and mri's reveal spinal stenosis in C3. Also my neck "crackles" daily and so do some of my joints. Fingers hurt - they feel sore in the knuckles. I don't get enough sleep - I wake up every two hours and my legs get nightly charlie horses. Shoulder pain and stiff neck comes and goes. Weirdest symptom - On occasions, I keep thinking there is something crawling on me and I keep trying to brush it off but nothing is there - always around my neck and chest. Night sweats Weight loss Extreme food allergies and can't even have one beer anymore Can't wait for this appointment - sick of being sick!
Posted by poppy (Member # 5355) on :
While you are waiting, start taking magnesium. It will help with the leg cramps. Take it about four times a day. It goes in and out pretty fast.
Posted by Lymedin2010 (Member # 34322) on :
IIH (Idiopathic Intercranial Hypertension). Which basically means I had so much head pressure & unbelievable pain. So much pain that I could not stand up & walk.
At the hospital they did a lumbar puncture & found I had high intercranial pressure, while all other tests showed normal.
For years prior I had headaches, then felt like head burns (chlorox in the brain), then neck pains & burns, then years later stomach pains, a few more years and some episodes of shortness of breat, then one day heart palps & down for the count, which quickly lead to IIH in a few days.
Posted by Lymedin2010 (Member # 34322) on :
Adding my daughter & niece. They are 1 year apart & have similar symptoms.
My daughter got bit at 2 1/2 yr. My nurse wife pulled the tick & went to the doc to get tested & was given no ABX. We were ignorant of Lyme back then. At the age of 5 she starts complaining about tummy aches & mostly at night. This would be off & on for months. Sometimes it just goes away.
When I get chronically sick & start reading/education, I noticed I had the tummy pains too & made the connection. My daughter then starts complaining of daily headaches, but on & off. Just like me too. Then from time to time she complains my neck hurts, just like me prior to getting sick. She then develops occasional joint pain, bottom of feet pain, & various migrating pain, even after 1+ year of treatment.
My niece is very similar with headaches, tummy aches, & migrating low pain occasionally. She also out of nowhere just gets tired & says I don't feel good, just like my daughter.
Posted by lpkayak (Member # 5230) on :
Kim mag should help but its possible you are neer mold and have fungal sinus infection.
Regular docs cant find it even tho it is common and it makes lyme worse
Posted by lpkayak (Member # 5230) on :
I cant find that "crazy ride treating mold colony..." thread
Where did it go...can you find it for kim above
Posted by dbpei (Member # 33574) on :
Wow this brings me back a decade but still feels like yesterday in so many ways.
Flashing lights in my vision, fibro type pain, fatigue, eye pain, light sensitivity, head pressure, severe headache/migraines, neck pain, numbness in my extremities, sweats and chills.
Posted by lpkayak (Member # 5230) on :
![[Wink]](wink.gif)
![[hi]](graemlins/hi.gif)
![[bow]](graemlins/bow.gif)
![[shake]](graemlins/shake.gif)
![[Big Grin]](biggrin.gif)
![[Frown]](frown.gif)
![[bonk]](graemlins/bonk.gif)
![[tsk]](graemlins/tsk.gif)
![[dizzy]](graemlins/dizzy.gif)
![[Smile]](smile.gif)
MBB3 ![[group hug]](graemlins/grouphug.gif)
![[toilet]](graemlins/toilet.gif)