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
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
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.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Dawnee
Unregistered
posted
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.
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posted
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.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
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 ]
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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?
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
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..
Posts: 14 | From New Jersey | Registered: Oct 2005
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posted
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.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
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?????????? Posts: 24 | From lymeland | Registered: Sep 2008
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bettyg
Unregistered
posted
thanks for bringing this up; good reading the latest newbies to reply here. xox
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posted
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.
-------------------- Sherlock Posts: 31 | From PA | Registered: Jan 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
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.
Posts: 1104 | From N.California | Registered: Jan 2008
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
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.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
Insomnia-Hyperacusis-Tinnitus then the nerve pain and the cognitive issues added to the mix.
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
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
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
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.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
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
Posts: 223 | From Western Mass. | Registered: Nov 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
What a great thread!
My son had flu-like symptoms followed by pain in knees and then pain in ankles.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
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.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
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.
-------------------- SEREN WEED Posts: 116 | From LOS ANGELES | Registered: May 2005
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posted
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.
Posts: 447 | From Vermont | Registered: Jan 2011
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
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.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
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...
Posts: 3 | From Montana | Registered: Jan 2011
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posted
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.
Posts: 342 | From northern california | Registered: Dec 2010
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posted
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"!
Posts: 60 | From PA | Registered: Jun 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
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!
posted
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.
Posts: 49 | From Taunton MA | Registered: Jul 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
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.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
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.
Posts: 173 | From Washington, DC | Registered: Oct 2013
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posted
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.
Posts: 873 | From WA | Registered: Dec 2005
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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).
Posts: 2387 | From New England | Registered: Aug 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
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
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
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? ??????
Posts: 2888 | From USA | Registered: Mar 2004
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posted
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!
Posts: 5 | From Connecticut | Registered: Jul 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
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.
Posts: 2888 | From USA | Registered: Mar 2004
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
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.
Posts: 2094 | From NY | Registered: Oct 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
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.
Posts: 2094 | From NY | Registered: Oct 2011
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