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» LymeNet Flash » Questions and Discussion » Medical Questions » PLEASE share experiences!!

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Author Topic: PLEASE share experiences!!
dmarie725
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Hi Everyone...

I'm pretty new here and not sure if I have Lyme. Just trying to make sense of some weird new physical issues over the last few months and am seeing a LLMD soon.

Can people please share their earliest mild symptoms? Also, I never remember being bit by a tic or seeing a rash or anything. Is this common?

Please share. I also have a terrible belching issue as one of my sudden odd issues. Anyone heard of this?

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randibear
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Ringing in the ears.

Course I hadthe bulls eye

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

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steve1906
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Click here for some past post on symptoms>>>
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/123089?

You can also search on any topic within this site.

Steve

--------------------
Everything I say is just my opinion!

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DaveNJ
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Never hasa bulls eye rash although i knew i was bit...6 weeks later i had a generla malaise, never felt well rested, heavyiness in my muscles. it crept from my hands to my trunk and then to my legs.

Dave

--------------------
On my journey to wellness - One day at a time.

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Carmen
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I knew I was bit but it seems like really nothing at the time. The bite was slight.

4 months later I developed what seemed very much like RA in my hands. If I had gone to a doc who didnt understand lyme I'd probably be way down the wrong trail by now. He diagonsed lyme that day with live blood analysis by dark fiedl microscope. You could see it in my blood.

Although my energy wasn't up to par real significant fatigue and exhausion didnt hit until I started treatment.

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GretaM
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Bull's eye rash.

Diagnosed as ringworm.

Progressed to full body spotted rash.

Monthly sore throats. Diagnosed as "strep" but never had a positive strep swab.

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birdie67
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Stomach problems, tremors, headache, dizziness
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dmarie725
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Hi birdie...what were your stomach problems?
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linky123
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Had an embedded nymph in my back and crashed a few months later. No rash that I could see.

It felt like a very bad case of the flu that never went away. My worst symptom was severe headaches.

It took me 19 years to get a proper diagnosis.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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joysie
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Haven't been on in a while but one of my earliest symptoms was belching LOL. It went away after bart treatment.
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Catgirl
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Back pain, headaches, easily chilled, fatigue.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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daphnesmom1
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It crept into my life slowly. Never remember being bitten, but felt an overall fatique, was doing less and less over time beginning in 2001.

I pushed through alot for the sake of my family and my business.

Migraines started that sent me to the hospital. Still a negative WB after 5 years of this insanity.

Finally in 2007, either I was bitten again, or something happened, and all hell broke lose.

CDC Pos, and then the games began.

--------------------
"Yeah, I miss me too."

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Lymetoo
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Fatigue, pain, migraines, sinus infections...and more.

Good info here too:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

--------------------
--Lymetutu--
Opinions, not medical advice!

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Sticksandstones33
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My first symptoms were dizziness, night sweats, fever, heart palp, ear ringing, tingling, itching and pain just above them like I was being stabbed in the skull that was August 2012. Bitten June 2012 with no rash.. Oh and I slept allot!

Then that winter all hell broke loose!! Weight loss, innapropriate sinus tachycardia, food intolerances, vertigo/dizziness non stop still persists.. GI issues, almost like IBS, anxiety, adrenaline like shocks to the body, you name it!! It went into a sort of remission from February 2013 till November 2013 it started to flair up again now all hell is breaking loose!

Positive igenex test came back Jan 15 IGG 23, 31, 39, 41 IGM 23, 31, 39, 41, 83 all IND Positive blood PCR Plasmid.

ID doctor said nope no lyme!! Llmd bound feb 5

There is hope in a endless sea of suffering!

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LisaK
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The symptoms that comes to mind for me are nausea and anxiety. they got worse and worse over the years i had of not being treated and now after a few months of treatment (after 16+ yrs of being undiagnosed and sick) I am almost anxiety free!!! yay!!!

I also get much less nausea. haha , I kept feeling like I had morning sickness and though I was pregnant so many times!

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Robin123
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I'd say most people don't have an initial rash.

My first symptom was soreness in my neck and shoulder muscles. That matches possible early cranial nerve involvement.

I actually saw the tick that did it - it was in my foot, a clinic told me it was a tick, and they removed it.

So I know it feels weird to have stuff happening when you never saw the culprit, but the only reason I saw mine was because it was an adult female, feeding for at least a week's time by that point - you might say it was camping in my foot! So the kind of tick that bites us matters too - the nymph size ones can bite and drop off.

If you learn what the bacteria can do, you'll better understand the symptoms. Did you see the doctor yet?

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Catgirl
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Well, since I got bit again, I can tell you that I started mixing up my words when I talk. Also some acid reflux (happened the last time I was bit as well). I feel really weak too. My back muscles tense up along with joint pain, foot pain, fatigue, sweats, chills, ears ringing, depression, zero energy, POTs, stiff neck, depersonalization, and my breathing is messed up. There's more, but you get the picture.

[ 02-22-2014, 11:16 AM: Message edited by: Catgirl ]

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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flowerfarmer
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A few of my son's symptoms-Lyme Disease for over 21 years. Just a few that aren't mentioned much-Anybody have these?
Quick black out when standing up
A heated bath is so muscularly devastating that it is almost impossible to stand up to get out

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LisaK
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not sure about the bath thing..... I really hate baths and never feel good after so maybe it is the same. BUT, maybe he is heat intolerant? I was so bad with this right before treatment.

I would almost pass out with any heat- sun, heater, whatever the source- and my hands and feet would swell and have so much pain from heat.

The quick black out thing- yes! Had this for years.

There are so many strange things that make me (us) feel bad! ugh. I am really wondering what I am really like! It's been so long since I felt good physically that when I finally get there I ccan't even imagine what I will be like!!!!

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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rzh1
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Here is a brand new study from Italy:

Clinical Features of 705 Borrelia burgdorferi Seropositive Patients in an Endemic Area of Northern Italy

http://www.ncbi.nlm.nih.gov/pubmed/24550705

It shows that 62% of the patients had initial rash and so on.

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nefferdun
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I had 3 EM rashes. I felt like I had the flu with stomach ache, headaches and fatigue. I also went to the doctor for back pain so bad I needed pain killers. That was the first couple of months.

6 months, my eyes became irritated and blood shot with extreme sensitivity to light. I needed sunglasses in the house!

I couldn't keep up in a dance class I loved. I was gasping for breath. I got really bad cramps that practically tore my tendons. Then I couldn't follow the teacher. I could do one step but if she put together 3 movements, I was lost.

I hope you get diagnosed and treated - the earlier the better.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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SLML
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Neffurdun - Yes! I have had the same experience when I was getting sick and didn't know it really know it yet. I all of sudden couldn't follow the instruction in an aerobics class that I had taken for years previously. I can relate. I was getting really p-o ed thinking the teacher was doing a crappy job of teaching. Ha - ha! to me actually thinking it was the teacher's fault! My brain was falling a part and that was why I couldn't keep up with stuff that had been so simple before. I have never read someone write about this before. I really get this. This was a few years before I got diagnosed. I must have looked like a joke in there trying to exercise! Of course, I had many other symptoms that progressivly turned into all hell breaking loose.
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dmarie725
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thanks for your experiences guys. i really hope i figure this all out soon...
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Lymetoo
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Have you seen an LLMD yet?

--------------------
--Lymetutu--
Opinions, not medical advice!

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Jake Hembree
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I had a quarter size rash not a typical bull eye rash but it was there for a good month didn't think much of it. All of a sudden started having gi problems,flushing of chest,chills,insomnia,bad anexity, heart always raising,muscle spasms,achey joints.
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surprise
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dmarie, re: your burping-
Have you been tested for H pylori?

I am reading up on it, as I am awaiting biopsy results/ indication from a recent endoscopy.

Re: Lyme and co- infections, I knew nothing about this disease, and if I saw a bullseye rash, would have thought it a bug or mosquito bite.

No memory, ever, of tick bite. I dislike going to the Dr., and thought all my symptoms were just 'how I rolled',
and my stressful lifestyle. Medical didn't occur to me,
blaming myself personally did.

It wasn't until my middle child got dx'd that I read the list of symptoms, got very honest with myself, had an epiphany, and had daughter's LLMD at our first visit recognize it came from me, and strongly suggest I get tested too.

Fevers were never a part of my picture, but self medicating with excessive caffeine, ibuprofen and nicotine were how I coped mostly. Haven't had a drink or illegal drug in > 25 years,

but I can easily see that as an avenue for some with these grave infections running rampant.
Take care, hope you can see an LLMD for clarity.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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dmarie725
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Lymetoo...yep I saw a llmd a few weeks ago. He said he didn't think lyme was a good fit for my symptoms but that he thought I may have a parasite issue which we tested for and am waiting on results.

Surprise...yes, I've been tested for h pylori twice (biopsy from endoscopy and the breath test). Both were negative...

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oceangirlSA
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My first symptoms were migraine headaches, knee pain, acid reflux, and memory and concentration problems.

My next symptom was tachycardia and an SVT diagnosis

As time passed, I became more and more fatigued,and then I started having muscle pain, chronic tendonitis, dizziness, peripheral neuropathy, TMJ and joint pain that seemed to be everywhere.

I had multiple tick bites, including several bites to my head and my GP refused to treat me, so I never ever got an antibiotic after a tick bite.

I think it was at least 13 years before I formally got diagnosed.

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Lymedin2010
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Bit 1995

2002 Headaches that come & go

2003-2004 Gradual more headaches.

2005 Headaches most of week & always very tired. At this point I remember telling a co-worker, "I don't have headaches anymore, I have BRAIN BURNS."
Very low energy, can't deal with energetic people & people most of time.

2007 Headaches & neck burns, like someone poured clorox there. Still they came & went. When I rested they went away, but when I overworked or stressed then I had more of it. Developed mild burning of the stomach, that would come & go oddly & then mostly come. Moved to a tick infested hell hole, had to have been bitten again.

2008 Felt weird one day & I turned pale. My stomach was burning & had a polyp removed. Felt better the next day & stomach burning went away for 3 months & then came back.

2010 Weird experience as if I had been poisoned. I think external chemicals made me herx badly & killed many borrelia. Reached a point I could not breath, felt something coarsing my blood, cold feet & hands, and is if my diaphragm was giving up on me. ER visit found nothing. By Nov 2010 I knew "something was just different & not right with me"

2011- All hell broke loose. Shortness of breath, heart palps, dizzy, lightheaded, & fatigued. So much head pressure that I could not walk. Chronically sick since then.


MY DAUGHTER:
2008: Bit when she was 2 1/2-3

2010: Tummy aches

2011: Daily tummy aches, occasional leg pains. nightly headaches. Started treatment & lasted for 1 year. 1 month into treatment swelling of joints.

2012: nightly headaches, neck stiffness every now & then. Sometimes neck pinch & stiff neck.

2013 & 2014: Most nights tummy aches, occasional nightly headaches. Exhaustion & tiredness at night, beyond what looks normal.


My niece who is 1 year older is almost the same as my daughter.

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