Topic: What was your very first sign something was wrong?
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Mine was dizziness. I am finding most diagnostic literature do not list this till much later and think this is wrong. Of course this is without EM rash. I didn't have.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Ocean
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Member # 3496
posted
I was having heaviness of the legs a month after getting the 'flu' in July 1996. The biggie symptom though was having a sudden episode of tachycardia in Oct 1996...everything went downhill from there.
Interesting question. However I believe have been infected at least 4 times, with 4 different onset symptoms.
But I didn't know something was really wrong until many months and years passed.
In my most recent infection, the only time I found a tick, I had dizziness too. This was in Nov '07
It felt like my blood sugar was low and I had just stood up. But my blood sugar was fine. This started about a week after the tick bite. (I sent the tick in, it was positive for lyme. No rash).
(I've been having bouts of this for the last week, 14 months into treatment).
I was not formally diagnosed until June '08, after I was chronically exhausted, dizzy, and felt disassociated from my body movements. I finally went to a LLMD I got from Seeking a MD.
But I was lucky, I had the smoking tick!
The first time in the summer of '83, I had strange oval rashes (not bullseye) followed by chronically swollen glands. I had NO idea what it was, and didn't go to a dr. I had not heard of lyme disease.
The next time, in June '95, I came back from a 3 week hiking trip through the NE, and a week or so later I had severe intestinal problems. This lasted for years with the dx of IBS. I didn't associate it with lyme, and cos. until last year. (My LLMD thinks it was from bart).
(My brother came back from a week in Cape Cod in '05. A few weeks later he developed similar intestinal problems that got worse. Then lots of other problems, that the Drs could not explain. Eventually, he was diagnosed with lyme.)
Finally, in Oct '04 I just started feeling tired and achy feverish (no fever though) after being in the Berkshires of MA. Like I had a mild flu-like virus. No one else around me was sick. I became more and more fatigued over the years.
This is when I believe I was infected with babesia (from later symptoms). But if I got babs then, I'm sure I was yet again reinfected with lyme.
In winter '87 I started having the classic symptoms of lyme. Brain fog, swollen joints, extreme fatigue, etc. My MD said I had CFS (of course).
However, I'm not sure if I was reinfected again in fall of '86, or if it was a worsening of the infection from '83.
So, only once did I get the rash. And only once did I see the tick.
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
I have to back to when I was 14 years old and had a large lymph node in my neck.
It was removed via biopsy, but the doctor/lab could not determine a cause.
Fast forward 15 years, I experienced TMJ, bloodshot eyes, and ears that would become red for no apparent reason.
Ten years later, I experienced considerable stress and started twitching all over, combined with heaviness in the legs. Brain fog, speech problems followed. Miserable!
Posts: 11 | From Orange County, CA | Registered: Jan 2009
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Heart palpitations which were diagnosed for years as panic attacks.
posted
I frankly dont know when something began to be wrong . Maybe it started after one wierd episode in summer where I had fever and felt like crap for about 1.5 weeks (in the mid of the summer mind you) -we were in Russian country so doctors access was very complicated , so we didnt do anything.
Then mild symptoms stayed with me throughout rest of my life - incredible fatigue in the morning, joint pains (mostly knee), cold hands (so I guess thyroid was broken back then ), some headaches. Then I had really bad depression for 5 or 6 years .
Now this year (that is 14 years later) all the symptoms really flared up (except depression which went away about 2 years ago), I get light sensitivity,brain fog x2, tingling, burning, hand going numb (that one really freaked me out). Which prompted me to actually go to pcp, who actually ran test - bam positive WB. on top of it screwed up HPTA, Thyroid, very low Vitamin D and high lead and mercury
Now I dont frankly know if its lyme which was causing it all of it . I had like 6 mercury fillings done at about 5-7 age old. Fillings soviet dentists used to make were really ****ty so they crumble,fragment and fall out in 2-3 years (and apparently I swallowed them when chewing). And I had horrible , horrible headaches till about 16 starting at about 6 or 7. I mean "climbing the walls " horrible . Plus I seemed to get food poisoning every few months (vomiting,chills etc) -which could have been food poisoning (soviet public schools food was not exactly a paragon of cleanliness and sanitation), but given the frequency might been something else.
I mean when one of your most clear childhood memories is head splitting headaches in retrospect you think it might been something wrong. So lyme symptoms which started at 14-16 were really mild compared to that, so I just ignored all that . I was happy horrible headaches were gone and replaced with milder symptoms.
Posts: 856 | From MA | Registered: Jul 2009
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TO LIFE
Unregistered
posted
Hi,
A double bulls eye rash with swelling.
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She found out first what it was and then 1 month later, I had identical same symptoms.
Posts: 18 | From tickland,pa | Registered: Jul 2009
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posted
Swollen lymph node in my groin. Removed for biopsy, could not determine cause "benign inflammation".
But, the first pain symptom that made me go to the doctor was "pressure" and burning on my neck....which has now spread.
But it's hard to tell, after I had my son, I got an eye infection in the hospital after he was born, then 1 after that about a year later, and then another one after that. Ear infections going on while the lymph node thing was happening.
It's just hard to tell what was from what.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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posted
I think I ignored all the flu like symptoms I must have had -- things were always "going around" and I worked in the schools at times.
But what finally sent me seeking help was decreasing stamina and energy and very sore hip joints. I thought it must be arthritis -- but no bone damage on an x-ray.
Fortunately, I had a doctor who thought it could be Lyme and had me tested - Igenex -- came back positive.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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posted
The first sign for me was that I began to only be able to go to the bathroom once a month.It was as though the nerves in my GI tract completely stopped receiving signals from my brain.
Posts: 710 | From West Coast | Registered: May 2008
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posted
1994- bulls eye rash after camping, followed by swollen knees and the first of several vertigo attacks.
Never treated until several months ago due to negative tests.
Interesting to see (yet sad) how many others list dizziness...
Posts: 819 | From East Coast | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Thanks guys. This was for a fellow from another
country who suddenly got sick after a plane ride.
Dizziness, neck and shoulder pain are his chief
complaints. Can't decide if it is flu or something
tick related. I don't know but I suspect the plane ride may have stirred up something.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
First a flu like illness with a really bad sore throat.
Later a constant ache in my right greater trochanter (hip).
Then developed a fibromyalgia syndrome.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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it strikes after sea/air travel and prolonged motion
Posts: 819 | From East Coast | Registered: Apr 2009
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
my first symptoms (didnt have a clue they were related to lyme until after a 7 month lapse):
started with sore lymph nodes under my arms, and progressed to the following over a period:
fever of 102 for 3 days, dehydration with headaches on a regular basis, phlegm in throat, intolerance to alcohol, weak wrists,
fatigue, two small bruises the size of a quarter that lasted for months, (still did not know lyme even after visiting a dermatologist-he didnt know what the marks were)
abnormal heart beat, heart palps, shortness of breath, and constantly feeling like i was coming down with something but never did,
finally pain in groin, and then every bone in my body hurt!
asked my regular md to be tested for lyme in addition to his menu of tests. came back CDC positive. (that was like a gift!)
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Thanks Kitty that is needed. I read about it some time ago but could not remember what it was. WOW
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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seekhelp
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Member # 15067
posted
Fatigue, leg weakness, severe muscle tightness, faintness, severe chills out of nowhere at work. So bad I couldn't work and kept having to leave early. I never was like that before. I felt like I was losing my mind.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymeparfait
Unregistered
posted
The first was definately intestinal problems in my youth, along with foggy thinking afater I had dental work in my youth.
I just learned to live with these problems, thinking it was just me.
Over the years all the other hard core symptoms progressed until my immune system could not handle it anymore, along with lyme.
Diagnosis of lyme actually saved my life. I am now lyme free, and workihng on the root of all my dystegulations.
We need to focus not on what was so bad that got our attention for treatment, but what was missed originally to cause our immune system to go haywire!
Most likely heavy metals, parasites, things affecting our intestinal absorption, like bad diet and environment along with inherited things.
Our illnesses happened way before we knew they existed.
Our current medical tests fail to pick up our problems until they are way too bad.
I encourage everyone reading this to do an over the counter type, intestinal cleanse along with a parasite cleans. Either Humaworm, or Dr. Natura can be ordered on line. Very effective.
You will be very surprised what you find that a stool test misses! Parasites are at the root of all lyme sufferers!
Everyone should clean the system before lyme treatment, for quicker success and absoption of the nutrients you will need for healing to occur. Also parasites get into all your organs, muscles, mind along with your intestine...they cause quiet, and severe damage over time as they become a part of your body.
I wish I knew this first, so I share it with you. I am finally healthy and feeling so good it is amazing.
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Lymeorsomething
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Member # 16359
posted
Strange, uncharacteristic chest pain...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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quote: Diagnosis of lyme actually saved my life. I am now lyme free, and workihng on the root of all my dystegulations.
We need to focus not on what was so bad that got our attention for treatment, but what was missed originally to cause our immune system to go haywire !
Well I can attest that positive WB lead me to read a lot about health. And radically turned around my perception of medicine and treatments .
quote: Most likely heavy metals, parasites, things affecting our intestinal absorption, like bad diet and environment along with inherited things.
Yeah my plan now is to do a round of parasite cleansing ,remove mercury fillings ,then cutler's chelation protocol and hit lyme somewhere along the way.
quote: I wish I knew this first, so I share it with you. I am finally healthy and feeling so good it is amazing.
Great to hear it . How long did it take you to get well though? I am kinda not very optimistic at the whole path. Because it is long ,arduous and from what I ve seen not guaranteed.
posted
I started here on lymenet after diagnosis almost 2 years ago.
Thought this may be a lifetime of treatment at the time. So I suggest don't think about duration. Just follow your intuition and your current LLMD's treatment if you see success and feel better.
I did abx and hit the co-infections first. Still had neuro lyme symptoms and tested positive still for lyme after 1 1/2 years of treatment with symptoms improving.
Needed an abx break as my body just felt toxic. Hard to explain. so I told my LLMD I wanted a break for a few month to detox. She could not really help me with the detox, so I went to a ND to learn detox. Also was helped here on lymnet tremendously!
After working backwards...I now realize that I should have started with the cleansing first with hitting the parasites, that I did not know I had.
Also, after following much advice about taking out my mercury amalgams with a biologic dentist who gave me chlorella before and during removal, I finally got rid of all my brain fog. It was amazing.
Then all the candida and parasites started to show. The three live together. This was when I decided to test myself again for lyme.
It is not testing at Igenex or energetically.
I have no more lyme symptoms. I still have lupus and symptoms related to poor absorption and intestinal problems, that are monthly improving with the proper protocols.
So how long did it take me to get well ?...I guess it was 40 years! I am over 50 years old and only now understand what has happened and how to get well. I had brain fog for so long that I don't remember when I could think normally, most likely in elementary school. I had stomach issues, constipation, bloating and food allergies that increased over the years since that time also.
I had my first real health crisis in college with pneumonia. Then progressed like others stated with all the symptoms from thyroid, hormonal problems, lung, asthma, muscle weakness, vocal cord problems, eye problems, rashes, light sensitive, smell sensitive, chemical sensitive, fibromyalgia, chronic fatigue, EBV , loads of viruses, and bacteria, then depression and anxiety, miscarraige, and ovarian cysts.
Most symptoms and conditions are gone now! The root of all, my intestinal tract and leaky gut will take time to heal I believe. This is not a hard thing to work on, just needs patients.
I am helping my children now, with major success.
I suggest to all who read this, work on the intestinal tract, via parasite , candida and metal elimination, and add the good probiotic bacteria back....
This could take a while, and I may be doing this for the rest of my life, that is to be seen, ...but I am feeling fantastic for the first time I can remember...
We are all different and have unique pre-existing conditions or heredity that effect our unique road to healing. It is hard to compare protocols, but I do know that each of us will benefit from cleaning and healing our gut and our blood! Candida, parasite, and metals are systemic!
I am still on this board, learning from those who are healthy and sharing what has worked for them.
I post to share my truthful experiences. I also was very sad, discouraged, angry and lost when I started here. No longer. There is hope.
posted
Oh I remember! Reducing stamina and 'heavy' arms that felt like lead. And then soon afterward weakness, tingling hands, vertigo, tremor, dystonia, brain fog, and extreme fatigue.
Come 1 year of treatment and most of it is resolved; thank goodness I found a doctor who took my Lyme concern seriously with those symptoms. And of course to ya'll for sharing your stories and advice -- I wouldn't have found my doc without your advice.
Posts: 36 | From Corvallis, OR | Registered: Jul 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I thought I had the flu or something...wasn't sure what it was.
After about 2 weeks, I was feeling "normal" again so got up and went for my morning walk.
About 5 or 10 min into the walk had a great deal of trouble moving the legs.
I knew it was more than just the flu at that point.
Even with the flu, I was able to go to work after a day or two..even if I still was not feeling up to it.
With this, I wasn't able to get up and shower or eat or think or move, etc.
I recall one side of the face feeling like I had been to the dentist office and they had numbed it, the tail bone feeling like I had cracked it, the ribs also feeling cracked or bruised.
In other words, I felt like I had been run over by a fully loaded Mack Truck.
I walked like a drunken sailor when I was able to walk down the hall to the bathroom...bouncing off the walls.
[ 08-18-2009, 09:02 AM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
At the age of 12......severe fatigue, headaches, chronic sinus infections and a sore throat all the time.
God, I hate this disease......
Posts: 893 | From Florida | Registered: Dec 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
He is in intensive care with what they don't know.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Massive fatigue that hit me like a Mack truck one day, and that was 2.5 years ago.
Posts: 215 | From Phoenix, AZ | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA! I agree with JamesNY..
"When the MDs said "Gee, I don't know what it is, maybe you're just depressed."
I think one of the dumbest things they said that made me go woah... was...
I had been very sick. Ended up at the ducks office again (a regular thing over many months).
One arm was hot and red, the other was ice cold and blue. I was so dizzy I couldn't sit up and so weak I could barely speak.
It was early in the morning, unusual for me to be there at that time of day... as the days normally got worse for me as they dragged on.
The nurse had asked me some basic questions when I got there and when the duck came in he had determined my condition was due to not eating breakfast that morning.
posted
I think I missed earlier clues, but I knew something was wrong when my face started to tingle and feel prickly.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Thanks Guys. They are saying he has Legionnaires Disease. He is on a respirator. Pray they found it in time.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Depends. The VERY first symptom many years ago when I was in high school was the headaches I would have EVERY SINGLE DAY. Then I had scary episodes of depersonalization/drealization while at work and it would scare me so much I'd end up crying while at work. That was during high school. I knew something was wrong, but doctors told me to just take 4 Ibuprofen when the headaches started. They said nothing else.
When I REALLY started to know something was wrong was when I had chronic tachycardia that NEVER stopped and then started having bad episodes of palps.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
His friend is tracking with the CDC via state
health depts to motels where they stayed and
airlines. They said he most likely got it because
he was immune compromised not aged. Keep you posted
but he is having arrhythmia's and I recommended pace
maker if need arises. He needs prayer.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
For my son it was his daily temps. We never saw under 100.5 and went as high as 105.8. We would have entire months where it would be 102-103 every day.
For me, it was stomach pain. First I was told I had just become more sensitive to my cycle. Then I was told I had turned thirty so "I was getting older!"
Posts: 28 | From southwest | Registered: Aug 2009
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posted
"ringworm" (lol) rash that covered my check and neck in August 1979.
Then knee issues within a year. No more sports.
Then TMJ about 3 years later.......
Then...got bit by one tick too many....reinfected...
1996. Crushing fatigue. Could not move left side of body. Did not have a rash. Had trouble even finding a Dr. to test me for a TBD!
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
My very first symptom was a cute one: a crunchy patch in one earlobe, which lasted a week or so. I was mystified, and am identifying it in retrospect.
--- Polly Polygonum
Posts: 1226 | From USA | Registered: May 2007
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posted
Driving my car into oncoming traffic, fatigue and digestive gas all around the same time.
But I could blow that off- for years. It was the overwhelming light and sound sensitivity that drove me into bed morning noon and night and made my child's laughter feel like knives in my head that made me KNOW I had a serious problem.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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cantgiveupyet
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Member # 8165
posted
I had the dizziness at onset too...one moment ok, and a split second i hand tingling , felt hot, head pressure...then on and off dizziness....was worse in the car.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
shortness of breath, dizzyness, heart palpitations all landed me in the ER one night out of nowhere.
not much happened after that until 6 months later I found myself getting lost in the area I grew up in along with full bore neuro symptoms.
the rest is a blur.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Pinelady,
Prayers go out to your friend.
The sudden onset of the flu that never went away, and the fatigue that went with it.
Posts: 2607 | From Hooterville | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Got good news today. They are going to wake him up
as infection is clearing. Haven't heard how he did
but he is a big strong man or I don't think he
would have made it.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Thank You all for your prayers, well wishes, and input. It was much appreciated and I will send him the link when he can get up.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Great to hear. Hope his improvement continues.
Posts: 819 | From East Coast | Registered: Apr 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Pinelady, I'll be praying also.
How I first knew I had Lyme.
I was unable to have a normal conversation with my friend. I couldn't make photo copies. I also had a strange burning sensation on my scalp. I mentioned this symptom (my scalp) to a doctor after being in the doctors office for 5 million other serious things. She said "have you ever been tested for Lyme". After looking up the bite on the internet it all came back to me. I had been bitten 1 1/2 years ago. I actually saw the bug on my leg but flicked it off. I called my doctors frantically I HAVE LYME. I left several messages and my doctor thought I was nuts (not many people in CA get Lyme).
Posts: 2232 | From USA | Registered: Aug 2009
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