LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » What was your very first sign something was wrong?

 - UBBFriend: Email this page to someone!    
Author Topic: What was your very first sign something was wrong?
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Ocean
Frequent Contributor (1K+ posts)
Member # 3496

Icon 1 posted      Profile for Ocean     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Lyme sucks.

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

Posts: 1619 | From Ohio | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
liesandmorelies
LymeNet Contributor
Member # 15323

Icon 1 posted      Profile for liesandmorelies     Send New Private Message       Edit/Delete Post   Reply With Quote 
First symptom that I noticed, but think there were others even before this one like hearing sensitiviy, tingling in legs etc...


Buzzing in my head and dizziness were the first ones that got me to really sit up and take notice!

I hate this disease =(

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

Posts: 869 | From nor - cal | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
JamesNYC
LymeNet Contributor
Member # 15793

Icon 1 posted      Profile for JamesNYC     Send New Private Message       Edit/Delete Post   Reply With Quote 
Pinelady,

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  |  IP: Logged | Report this post to a Moderator
JamesNYC
LymeNet Contributor
Member # 15793

Icon 1 posted      Profile for JamesNYC     Send New Private Message       Edit/Delete Post   Reply With Quote 
Actually,

When did I know something was wrong?

When the MDs said "Gee, I don't know what it is, maybe you're just depressed).

Posts: 872 | From New York City | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
tickwhisperer
Member
Member # 18676

Icon 1 posted      Profile for tickwhisperer     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
LisaS
Frequent Contributor (1K+ posts)
Member # 10581

Icon 1 posted      Profile for LisaS     Send New Private Message       Edit/Delete Post   Reply With Quote 
Heart palpitations which were diagnosed for years as panic attacks.

--------------------
https://www.facebook.com/profile.php?id=1660435643

Posts: 1078 | From Lake Geneva WI | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
coltman
LymeNet Contributor
Member # 21272

Icon 1 posted      Profile for coltman     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
TO LIFE
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
Hi,

A double bulls eye rash with swelling.

IP: Logged | Report this post to a Moderator
lymestinks
Member
Member # 21181

Icon 1 posted      Profile for lymestinks     Send New Private Message       Edit/Delete Post   Reply With Quote 
hi!

My first symptom with my sister and I were left

side numbness and tinglyness from head to toe.

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  |  IP: Logged | Report this post to a Moderator
Beautiful Disaster
LymeNet Contributor
Member # 21882

Icon 1 posted      Profile for Beautiful Disaster     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
dguy
LymeNet Contributor
Member # 8979

Icon 1 posted      Profile for dguy     Send New Private Message       Edit/Delete Post   Reply With Quote 
unusual headache and dizziness
Posts: 727 | From USA | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
mine was my hands and feet turning dark blue and dark red.

also sweating and insomnia. i couldn't sleep for more than 30 minutes at a time.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Judy G.
LymeNet Contributor
Member # 18498

Icon 1 posted      Profile for Judy G.     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
tosho
LymeNet Contributor
Member # 10191

Icon 1 posted      Profile for tosho     Send New Private Message       Edit/Delete Post   Reply With Quote 
Very slightly decreased vision sharpness was my first symptom.

--------------------
[Bb WB igm+] [B.henselae PCR+] [Chlamydia pneum.igm+igg+] [EBV igm-igg+]

Posts: 844 | From Poland | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
LittleLymie19
LymeNet Contributor
Member # 15610

Icon 1 posted      Profile for LittleLymie19     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
kitty9309
LymeNet Contributor
Member # 19945

Icon 1 posted      Profile for kitty9309     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239

Icon 1 posted      Profile for Dekrator48     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
laceyj
LymeNet Contributor
Member # 13862

Icon 1 posted      Profile for laceyj     Send New Private Message       Edit/Delete Post   Reply With Quote 
i look back now and see many signs i had it a long time

but mine was fatigue, fatigue
then pain, insomnia... and symptoms just compiled

Posts: 187 | From FL | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
kitty9309
LymeNet Contributor
Member # 19945

Icon 1 posted      Profile for kitty9309     Send New Private Message       Edit/Delete Post   Reply With Quote 
pinelady--

look into mal de barquement syndrome.

it strikes after sea/air travel and prolonged motion

Posts: 819 | From East Coast | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551

Icon 1 posted      Profile for gemofnj     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks Kitty that is needed. I read about it some time ago but could not remember what it was. WOW

He has a sore throat also.

[ 08-16-2009, 11:22 PM: Message edited by: Pinelady ]

--------------------
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  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
lymeparfait
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
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.

IP: Logged | Report this post to a Moderator
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359

Icon 1 posted      Profile for Lymeorsomething     Send New Private Message       Edit/Delete Post   Reply With Quote 
Strange, uncharacteristic chest pain...

--------------------
"Whatever can go wrong will go wrong."

Posts: 2062 | From CT | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
coltman
LymeNet Contributor
Member # 21272

Icon 1 posted      Profile for coltman     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

[ 08-17-2009, 10:46 AM: Message edited by: coltman ]

Posts: 856 | From MA | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
lymeparfait
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
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.

Good health to all!

IP: Logged | Report this post to a Moderator
ebbakarin
Member
Member # 16362

Icon 1 posted      Profile for ebbakarin     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
kam
Honored Contributor (10K+ posts)
Member # 3410

Icon 1 posted      Profile for kam     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Need Lots of Help
LymeNet Contributor
Member # 18603

Icon 1 posted      Profile for Need Lots of Help     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
rachellemarie
LymeNet Contributor
Member # 16419

Icon 1 posted      Profile for rachellemarie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
HA! I agree with JamesNY..

"When the MDs said "Gee, I don't know what it is, maybe you're just depressed."

[Big Grin]

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.

That's when I knew something was seriously wrong.

[lol]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Wonko
LymeNet Contributor
Member # 18318

Icon 1 posted      Profile for Wonko     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346

Icon 1 posted      Profile for disturbedme   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
kitty9309
LymeNet Contributor
Member # 19945

Icon 1 posted      Profile for kitty9309     Send New Private Message       Edit/Delete Post   Reply With Quote 
Pinelady-

So sorry to hear your friend is so ill. Will hope for the best.

Keep us updated.

~Kitty

Posts: 819 | From East Coast | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Good thoughts headed his way!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
mv
Member
Member # 21888

Icon 1 posted      Profile for mv     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
pepperspeck
LymeNet Contributor
Member # 18837

Icon 1 posted      Profile for pepperspeck     Send New Private Message       Edit/Delete Post   Reply With Quote 
"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  |  IP: Logged | Report this post to a Moderator
pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846

Icon 1 posted      Profile for pamoisondelune     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
catskillmamala
LymeNet Contributor
Member # 12536

Icon 1 posted      Profile for catskillmamala     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165

Icon 1 posted      Profile for cantgiveupyet     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Toppers
LymeNet Contributor
Member # 20083

Icon 1 posted      Profile for Toppers     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 499 | From Cleveland Ohio | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
linky123
Frequent Contributor (1K+ posts)
Member # 19974

Icon 1 posted      Profile for linky123     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
kitty9309
LymeNet Contributor
Member # 19945

Icon 1 posted      Profile for kitty9309     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great to hear. Hope his improvement continues.
Posts: 819 | From East Coast | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
Pinelady - hope your friend is doing better - just looked up Legionnaire's disease - says it's due to exposure to water contaminated with the Legionnaire's bacteria.

My first Lyme symptom: stiff neck and shoulders.

Haley - so many doctors have made the statement that we don't have Lyme in CA, that one of our CA advocates conducted a survey of us in CA.

She got over 150 responses back about where we had contracted it here. It's on the CALDA website, www.lymedisease.org, in the blog Touched by Lyme, March 12.

There are also 900+ folks on CaliforniaLyme now.

Posts: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
I remember the shock to that thread Robin123. Wonder how many they are missing?

--------------------
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  |  IP: Logged | Report this post to a Moderator
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396

Icon 1 posted      Profile for lymemomtooo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Pinelady. My daughter's first noticed symptom was anxiety and mild panic. She started separting from her friends..But looking back, think she must have been slowly putting herself in the background and they stopped wanting to be her friend.

She had many previous times of being covered by deer ticks..But you know the drill, a negative test..lmt

Posts: 2360 | From SE PA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
alliebridge
LymeNet Contributor
Member # 9103

Icon 1 posted      Profile for alliebridge     Send New Private Message       Edit/Delete Post   Reply With Quote 
My very first symptoms: Raynaud's in my hands. Also the veins on the sides of my fingers would bulge out and feel sore/tender, off and on.

Around that same time I developed costochondritis and my sternum was tender and swollen. All of these symptoms would come and go.

After that (a year or so later) more symptoms: fatigue and all over pains (which would come and go).

I didn't think much of it for the first few years, as the symptoms were not constant.

And as I was a city person (and no bulls eye), Lyme and other tick-borne diseases were not on my radar.

Posts: 366 | From MA | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
lou
Frequent Contributor (5K+ posts)
Member # 81

Icon 1 posted      Profile for lou     Send New Private Message       Edit/Delete Post   Reply With Quote 
Swollen knee, and strange very occasional burning sensation in skin of back (small area). Bone pain in the leg without the swollen knee - would come and go. Red mark on skin that never went away (small, not bullseye). I saw a mark just like this on a doctor's arm who told me it was where he had an attached tick.
Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590

Icon 1 posted      Profile for lymetwister     Send New Private Message       Edit/Delete Post   Reply With Quote 
Gut Wrenching Anxiety, followed by Breathing Attacks (Not Air Hunger) that only Benadryl would hault, then Tachycardia, then POTS.

LT

Posts: 1227 | From District of Columbia | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Healthygirl
Junior Member
Member # 22114

Icon 1 posted      Profile for Healthygirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
I think that I knew that something was wrong about 4 years ago. I was so tired. My brain was foggy. I went to the Dr and she said that my fatigue was because I was depressed. I may feel sad at times but I have rarely been a depressed person. This lead me to do acupuncture and work with a nutritionist, he thought I was weak in the adrenals... felt better with supplements but never totally back to normal. Flash forward to July 2009. I have a flu that keeps me pretty much bed ridden for 6 days. Then about one week later a large rash on my right hip. Dr says that it is a spider bit. I start looking at things about Lyme, not sure why but a gut feeling.
I go to the Dr again because I feel sick again and hip hurts. I woke up to Wisconsin Public Radio and the show is about Lyme Disease. I advocate for myself and convince the Dr to give me antibiotics( I have always avoided antibiotics). I have a blood test and the test comes back positive.
After 3 weeks of antibiotics, I feel tired, foggy again. I have convinced the Dr to give me 3 more weeks of antibiotics. I have an appointment with a Infectious Disease Dr Sept 9. I want to make sure I do this right.
Sometimes the stuff on here makes me scared. Will I get better? I really feel that I have gotten off easy so far!

Posts: 3 | From Burlington WI | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
hezzer926
LymeNet Contributor
Member # 17902

Icon 1 posted      Profile for hezzer926     Send New Private Message       Edit/Delete Post   Reply With Quote 
The first really obvious symptom was crushing fatigue.. absolutely out of nowhere... if I remember a few days back from when that started, I had some twitching and just felt off...
Posts: 245 | From East Brunswick, NJ | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
He called his friend today and told him he knew he

was a lucky man. But he don't remember much about

what happened and wanted to be refreshed. We are

guessing he got in on the plane or at one of the

motels he stayed in. Air conditioner.

--------------------
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  |  IP: Logged | Report this post to a Moderator
Cass A
Frequent Contributor (1K+ posts)
Member # 11134

Icon 1 posted      Profile for Cass A     Send New Private Message       Edit/Delete Post   Reply With Quote 
Dear Pinelady,

Thanks for the good news!

I got a bull's eye rash in 1998, but wasn't treated at that time.

As for me, my first symptom that was really bad was vertigo, where I had to lie down.

But, I kept going...

Then, hypothyroid that wouldn't correct...

Then, tinnitus out of nowhere---that lead to the Lyme tests.

Best,

Cass A

Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
0ldman
LymeNet Contributor
Member # 22101

Icon 1 posted      Profile for 0ldman     Send New Private Message       Edit/Delete Post   Reply With Quote 
My initial problem was my entire spine hurt, felt raw and almost like a constant cut going down from my head to my butt, and constant popping and cracking. Shortly thereafter, migraines and temporary blindness, lasting a few seconds, sometimes as long as a couple of minutes before it returned.

Everything ached, just like the flu, then palpitations. 3 years later, I was diagnosed. 18 years since I got sick, and the beast has returned in the past ~4 years.

--------------------
Ticks suck.

Posts: 140 | From Alabama | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693

Icon 1 posted      Profile for Dawn in VA     Send New Private Message       Edit/Delete Post   Reply With Quote 
After first round of tick bites, vertigo and balance issues. Had no clue about Lyme.

Second bite many years later, swollen lymph nodes, joint pain and severe headaches. Figured it out then.

--------------------
(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Healthygirl:
I have an appointment with a Infectious Disease Dr Sept 9.

Hi, and welcome here! - ID docs don't usually get it right re Lyme. I suggest you post in Seeking a Doctor for a doctor in your area. You should put your state name in your heading. People here will send you an LLMD list. You can also post about your own situation in General Support or Medical Questions.
Posts: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Healthygirl:
I think that I knew that something was wrong about 4 years ago. I was so tired. My brain was foggy. I went to the Dr and she said that my fatigue was because I was depressed. I may feel sad at times but I have rarely been a depressed person. This lead me to do acupuncture and work with a nutritionist, he thought I was weak in the adrenals... felt better with supplements but never totally back to normal. Flash forward to July 2009. I have a flu that keeps me pretty much bed ridden for 6 days. Then about one week later a large rash on my right hip. Dr says that it is a spider bit. I start looking at things about Lyme, not sure why but a gut feeling.
I go to the Dr again because I feel sick again and hip hurts. I woke up to Wisconsin Public Radio and the show is about Lyme Disease. I advocate for myself and convince the Dr to give me antibiotics( I have always avoided antibiotics). I have a blood test and the test comes back positive.
After 3 weeks of antibiotics, I feel tired, foggy again. I have convinced the Dr to give me 3 more weeks of antibiotics. I have an appointment with a Infectious Disease Dr Sept 9. I want to make sure I do this right.
Sometimes the stuff on here makes me scared. Will I get better? I really feel that I have gotten off easy so far!

If you have felt this way for 4 years I would get

an appointment with a LLMD. Most IDS docs do not

recognize this disease to be like it cousin

syphilis which can become dormant and reemerge

later. For this you need a LLMD to treat. Please

do like Robin123 stated and post in Seeking LLMD in ?

--------------------
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  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.