This is topic How long have you been living with Lyme? in forum Medical Questions at LymeNet Flash.


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Posted by salatheel (Member # 5786) on :
 
Just curious to see how long everyone has had it. Do you know of any coinfections?
 
Posted by graneet (Member # 3112) on :
 
Got sick in 1999 been six years going on seven.

Was dx with babesia and never treated until this doc number 3.


 


Posted by 3greatkids (Member # 3838) on :
 
Was diag.3 years ago,been treated by LLMD for over a year now, probably had it alot longer than that ,looking back on things.

Also have Babesia .
 


Posted by lookin4answers (Member # 4974) on :
 
For me that is a hard question. Here is why:

I am 31 yrs old and have 2 daughters that are 7yrs old and 13mths old.

My 7yr old actually has a POS>test per the CDC and shows major symptoms.
My little one has Pos. bands specific for lyme and has been sick more than half her life.

I have Pos. bands for lyme also.
Taking 3000mg Amoxy daily till I get to my LLMD late Aug.
None of us have been "officially diagnosed". But am certain we are all going to be treated due to test/symptoms.

I can go back at least 10 yrs with the first symptoms (chronic fatigue, numbness in hands,and a couple of others). However it seems as though I have always had fatigue and sharp pains in chest/side area even as a young girl.

Guess my answer would be 10yrs plus.
Not knowing if my mom (rosesisland2000) gave this to me like I feel sure I did both my girls.

 


Posted by Lenny777 (Member # 5452) on :
 
Memorial Day 2003! What a holiday. Went camping and haven't been the same since.
 
Posted by TheCrimeOfLyme (Member # 4019) on :
 
september 2002.

Lyme, bartonella and babesia, mycoplasma and strep
 


Posted by Nancy-OH (Member # 3567) on :
 
Since summer 2001.
 
Posted by pab (Member # 904) on :
 
I've been living with 2 lymies since the summer of 1999.

They have tested positive for Lyme, Babesia, and Bartonella.
 


Posted by robi (Member # 5547) on :
 
*Tick bite November 2003.Symptom onset
December 2003.

*Wading through the "duck pond" January to March 2003.

*Self diagnosis March 2004.

*LLMD diagnosis/start of treatment April 2004.

*Currrently symptoms improving on abx and alternative therapy.

Been tested for all coinfections.....at Igenex. All are negative, Still I suspect babesia or bartonella. Oh yeah, They did find mycoplasma in a swollen lymphnode.
 


Posted by Lymetoo (Member # 743) on :
 
Well, at least 45 yrs. I may have even been born with it...I'm 53 now.

I was first knowingly exposed to ticks when we first started going to our inherited land when I was about 8 yrs old.

I ran around in the woods with my brother and we both came back with about 100 ticks on our legs! UGH! This was the late 50's and no one was really concerned about them then!

I've been sick off and on all my life....especially since I was 17 and came down with "mono". After that, it was one thing after another.

Fast forward a few years....My joint/muscle pain began 25 yrs ago, and I was dxd with FM. Then 4 yrs ago I was dxd with Lyme. By that time, I had already been retired on disability for 6 yrs.

So...still taking abx, but doing well.

------------------
oops!
Lymetutu

 


Posted by RECIPEGIRL (Member # 5884) on :
 
Started having slowly, progressive symptoms about 15 years ago.

Misdiagnosed for 5 years with myasthenia gravis due to l droopy eyelid. EMG test never done until I changed Docs & asked for one---5 years after the fact.

Diagnosed with Lyme May 2003 & started treatment; no rash; no tick.

Diagnosed clinically for Babs, June 2004.

My 20 yr. old son just diagnosed for Lyme with Bowen Lab. First developed symptoms as a preschooler & 1 years ago developed 1 droopy eyelid. He's had numerous ticks on him. No rash.

Take Care,
Jan


[This message has been edited by RECIPEGIRL (edited 18 July 2004).]
 


Posted by trying2bsunny (Member # 5798) on :
 
Got bit in 1999. Six years going on seven
 
Posted by arg82 (Member # 161) on :
 
Was diagnosed in 1997 following what I believe was a reinfection. Probably had Lyme since 1990 or earlier. Also have/had Babesia and Bartonella.

--Annie

------------------
``The best way out is always through.'' -Robert Frost
 


Posted by crmc (Member # 4207) on :
 
Symptoms started summer 2001 after I was bitten on a camping trip. But really bad stuff started in 2003 after I was bitten again.

Looking back at the health problems I have had since my teenage years, not sure I may have been infected way back then as I had bitten many times as a child.

Tested positive for Lyme and Babesia thru Bowen.
 


Posted by ArtnSoul (Member # 4561) on :
 
I've been sick all my life... I was probably
infected when 3 years old. I had the fever, joint pain (red swollen knees), the rash that the doctor's didn't know what it was.


This was in 1966 - I/we weren't diagnosed until last October. I'm 41, so that's 38 years. Both of my children have lyme. They got it from me - daughter: 17 years, son: 16 years.

My story sounds much like lymetoo's - even the "mono" that I got - only I was 16. It also attacked my liver.

[This message has been edited by ArtnSoul (edited 19 July 2004).]
 


Posted by Stella (Member # 3119) on :
 
At least since Spring of 2001.
That's when my first symptoms appeared.


Time sure flies by - I can't believe it has been three years!



 


Posted by tvalentijn (Member # 5255) on :
 
I moved from Texas to Massachusetts in September 2000. From January 2001 I had a bout with cancer, got that done in May 2001.

In September 2001 I got this major pain in my legs - a neurological pain. It's a 'funny' pain, always symmetrical. For instance one day both legs hurt inside upper leg, next day both leg outside lower legs etc. Looking back, I think that that was when I got bitten. If that was not the cause then I might have Texas Lyme! Nobody knew what to do with the pain in the legs, they thought it might be related to the radiation treatment for the cancer. They gave me Neurontin. It went away (mostly) February 2002.

March 2003, one year later, I started getting chest pains, pain in my lungs and was always sick. I also had other symptoms, like muscle cramps in my feet. After reading on Lymenet.org I asked my duck to check me for Lyme but he did only ELIZA, which came back negative.

January 2004 I got dx with Lyme (clinically supported with positive Igenex test for BB). Since then on treatment.

When I have my weekly Bicillin herx, the pain in my leg returns for a day or two...

I tell you, the cancer was easy compared to the Lyme!

Tim

 


Posted by lymeinhell (Member # 4622) on :
 
Diagnosed with Epstein Barr & Mono (but aren't we all given some kind of canned diagnosis) in 1995, but symptoms started the year before.

Diagnosed with Lyme and Bartonella March 2004.

------------------
Julie G.
___________
lymeinhell
 


Posted by Gabrielle (Member # 5329) on :
 
Thought I had it since 36 years, but after reading something here yesterday, I think I probably have it since 44 or 45 years.

Got strange red rashes when I was 2 or 3 years old. Doctor didn't know what it was but said it could be scarlet fever. Didn't have the strawberry tongue, though. Also, there was no other kid with scarlet fever around and I didn't infect anybody else with it, myself.

Later, I was the only kid who got Mumps THREE TIMES !!! Doctor said, never heard of such a case before, but thought it was probably because I didn't have it properly the first two times ... haha!

Gabrielle
 


Posted by lifewithlyme (Member # 4557) on :
 
since May of 1999...
 
Posted by dmcbrayer (Member # 5296) on :
 
quote:
Originally posted by Lymetoo:
Well, at least 45 yrs. I may have even been born with it...I'm 53 now.


That's Lymetoo long.

I've had it too long too!
 


Posted by Laczitag (Member # 90) on :
 
Since spring of 1999. No co-infections; no metals; only Lyme which re-surfaces every 6 months to a year, and I test positive again.
Laczi
 
Posted by Nestle (Member # 878) on :
 
I am sure I was born with it. So I have had Lyme for over 39 years. I was diagnosed with Babesia and Ehlichia in 2000.

Karen
 


Posted by Starphoenix (Member # 2402) on :
 
I'm sure I've had it since 1985, though I may have had an initial infection in 1983. I believe I've had at least a few bites.

I relate to Lymetoo, too! I was diagnosed with Mono at 17, and I don't test positive for Epstein-Barr.

I relate to CrimeOfLyme as well. We have the same "laundry list" of diseases: Lyme, Bartonella, Babesia, Mycoplasma (I test positive for long-term antibodies, and I never knew I had this!), and Strep (B).

I was diagnosed with the TBD's in 2002. Steph
 


Posted by RECIPEGIRL (Member # 5884) on :
 
Hey Gabrielle,

You should post your story about a DOC saying you had the Mumps three times because you didn't have it properly the first 2 times in the Post Topic called:

New Poll: What is the most outrageous thing a doctor has actually said to you? With 213 responses it was last posted July 20, 2004.

Anyway, my eyes popped out at that story. That's hilarious & beyond belief!
I thought I'd heard it all.
Take Care,
Jan
 


Posted by wrotek (Member # 5354) on :
 
21 years old ,
got tick and sick since 1999 or 2000.

 
Posted by ShelleyA (Member # 49) on :
 
Infected 1962...........42 yrs.
 
Posted by smiles (Member # 5635) on :
 
This is a neat post!
In hindsight first got the 'flu' in May 2003. However, interestingly did have Mono with infected liver when I was 16 (I'm 30 now).

Who knows? Don't remember getting bit or a tick or a rash ever, except as a kid but lord knows what kind of tick that was.....
 


Posted by artbyjessie on :
 
I think i have had lyme since 2000 when i waltzed into my doctor's office with a swollen lymph node in my neck and a bug bite in my hair. He basically told me to go away.

I then got the flu in the summer and was told i had epstein barr.

When i presented months later with 104 fever, strange bloodwork and an enlarged spleen I was sent to an oncologist because they suspected "malignancies."

By some grace of god in the midst of all that i kept insisting on lyme tests and armed with 3 positive ELISAs i did some research.... and ended up with Dr. H who has turned my life around.

On a side note:
The thing i notice most about NEW lymies is that they will dissect all of their symptoms and find a non-lyme cause for all of them -
eg., my knees hurt but i ran in college, so...
Yah, my neck is killing me but 10 years ago i had an auto accident...
My head hurts but i've been under stress lately...

I made every excuse in the book myself -
no one ever ties it all together quite like an LLMD.

wishing you all good health no matter where you are on your journey.


 


Posted by kam (Member # 3410) on :
 
Sept/Oct. 2001 became too sick to go into work or do routine chores around the house or sit upright or walk, etc.

Knocked on medical doors until Jan/Feb. 2003 when I had a lyme dx via a positive Igenex WB.

Continued to finish out testing that had been started as suggested by LLMD to make sure nothing else was going on.

On abx treatment for over a year now. 8th week of IV rocephin currently.

Looking back, wondering if vertigo, ringing in ears, fatigue, disorientation, pain in eye, migraines, headaches, severe headaches, urinary track infections for a year, right leg going numb, tingling in hands and feet when I took a hot bath, etc. were also lyme related before the invisible truck that hit me in Sept/Oct. 2001.
 


Posted by mammachase (Member # 5697) on :
 
2 years today, same here, mine started off with severe inner thigh pain and then outside pain, muscles so tight like I worked out but didn't and hurt to walk on them, everyone couldn't figure out because the pain was in both legs which was told by neuro it couldn't be back pain, etc. because usually isn't in both legs, but it was and they were making like I was crazy "can't be in both legs all the time", but it was!!!!
 
Posted by duke77 (Member # 5051) on :
 
I got the flu Sept 03' didn't really know what it was until symptoms got bad enough in November. Went to three doctors; Doctor Stress, Doctor Viral Meningitis, and Doctor Its your imagination. Diagnosised it myself, went to a LLMD got four positive tests back (2 PCR, 2 WB).

I really feel like I had it longer with minor symptoms and then something triggered it. In August I went camping, got off of Lamisil, got bit by a spider (left a dime size crater), in July got in a car wreck my neck really bothered me after. No telling which one or any trigger it or if I was reinfected.

For the last seven years I have had symptoms that could be construed as Lyme. I would get motion sickness especially riding in the car (not driving) never had that before, Tinnitus, restless leg syndrome, shallow pain in my back next to my spine and left lung that would come and go (docs said pulled muscle), had to stop running because of terrible shin splints, fatigue especially in afternoon, poor concentration, increased thirst and hunger craving sweets and salts (never used to be a dessert or sweets person), profuse sweating after little activity and decreased stamina. Think most of these symptoms started around 97'. I back then I lived in sort of a hot bed of Lyme. I faintly remember pulling a tick off my leg around 96'. I am not positive, I didn't know the severity of Lyme back then and didn't get a rash.
 


Posted by rosesisland2000 (Member # 2001) on :
 
Severe symptoms, too, much to ignore, happened in late 1999. However, I believe that I actually have had Lyme and/or co-infections for many years before with symptoms cropping up every now and again...possibly 20 years or more.

Only diagnosed with LD in January 2001 after searching and many, many docs and tests from 1999 on.

In reality, I may have given it to my 31 year old, for she has experienced symptoms for most of her life. We do believe, for sure, that she gave it to her 1 year old, possibly her 7 year old. They are all seeing LLMD for first time in August and have their positive WBs in hand.

Rosemary
 


Posted by once bitten on :
 
definitely since 1983 and probably since 1976. dx of panic, prob ms, cfids, sinus, nuts (well they got that one right) and then Lyme, add into that erhlichea, babesia, and bartonella.
wheeeee doing well for past year or so but still have a truckload of markers.

 
Posted by lymebrat (Member # 3208) on :
 
Hi,

I was diagnosed with lyme in June of 2001. But my LLMD suspects that I have had it since 1991.

I also tested positive for 2 co-infections in 2003.

Also both my children have lyme, their LLMD feels I may have passed the lyme to them in utero.

My son Derek was diagnosed with lyme in May of 2003 ( at age 7) and my daughter was diagnosed last December at age 6.

I feel I am as good as I'll ever get, so I took myself off all antibiotics in April 2004, and so far I am doing well.

In fact, other than the viral infection I had a few weeks back, I am feeling better now than I have in 3 years.

My children are being treated by Dr.Jones and are both improving...slowly, but improving.

So far, both kids have tested negative for co-infections.

Also just to note, my husband went to the ER about 2 weeks ago and the ER doc ( without knowing that myself and 2 children have lyme) is treating him for lyme as well.

Best Wishes,
~LymeBrat
 


Posted by salatheel (Member # 5786) on :
 
Lymebrat,now that you are off antibiotics what are you doing to keep yourself well? How about your kids?
 
Posted by marie (Member # 3980) on :
 
Bit by tick in 1996-9yrs. Started treatment last August-getting worse.
 
Posted by Aniek (Member # 5374) on :
 
I was most likely infected in 1986, when I was 11 or 12. I had a bug bite on my neck and developed a circular rash around the bite, headache and chills. The ER and a dermatologist both said it was an allergic reaction.

About 18 months later I had painful swelling in my left knee, but I never got a positive Lyme test. I had other symptoms I never connected to Lyme - lower back pain during my time of month, stiff necks, etc.

My major co-infection is salmonella. I don't know when I got this infection, because I have never had the food poisoning symptoms of salmonella. But I test positive, and the antibodies have increased since starting abx. My LLMD thinks the salmonella is causing my most acute symptoms.
 


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