Looking back at my history...have I had this for 2 decades?

[Hope75]

My mother spurred on my thoughts about Lyme being possibly being present in me for over 20 yrs.  I've told the story before, but I have new memories, thanks to Mom:

I was 10/11 yo - in Indianapolis visiting cousins and playing in a barn infested with mice.  You could see them everywhere, hence, the curiosity of us kids playing and watching the mice in that barn.  I came home and we don't remember when, but we were there a week and at some point I found a tick on my scalp.  Then, my mother and the whole family inspected my head and they found three ticks - embedded deeply.  They tried the nail polish trick and the light a match and stick it to the tick trick.  They plucked what they thought were the whole bugs out, but the heads stayed in.  

When we came back home, for some forgotten reason I was taken to the pediatrician and upon inspection, he found the heads of the ticks in my scalp.  He removed them all and my mom told him I had lumps all over my scalp.  She reports that he looked unconcerned and said, "it's probably just an infection."  I remember feeling the lumps myself.

Fast forward to about 13 yo.  I was having severe aching in my knees.  My mother took me to the doc and they diagnosed me with Osgood-Schlatters disease - a "growing pain" type of disease.  Solely off of symptoms, they diagnosed me.  My mom stated last night, maybe that's why your knees hurt so bad?!  Maybe that's why you have scoliosis?!  She felt guilty of course and I told her that docs don't know what they are doing with Lyme today, let alone back in 1985!  I told her I don't know if any of that would have happened either way.

Through the years, I've had: anxiety, panic attacks, depression, joint pain, migraines, palpitations, mitral valve prolapse, and now, this neuropathy, fatigue, elbow pain and generally feeling ill.  I shudder to even list the panic attacks, anxiety and depression, because docs are so quick to label you as "just crazy".  I'm not, I can assure you.  I have a successful career, three degrees, a great husband and a prosperous life, so I've done something right.  

So, has Lyme disease been with me for over 20 years?  Who knows.  Some say it can lay dormant, others say no way.  

I look at these things as objectively as possible.  I ask friends and family what their opinion is, and they, for the most part, trust that I at least know what I am talking about.  They know I'm not stupid.  My father's only concern is that I am so happy to get a diagnosis that I'm just celebrating and jumping into treatment without having enough skepticism to weigh the risks of treatment vs. symptoms.  He asked, "can't you just ignore the symptoms, because the treatment side effects may be worse than the symptoms?"  I replied with a resounding "No!".  I've been sick long enough and I hurt enough to try a stinking course of antibiotics.  Period.  It's not chemo!

I certainly have my little skepticisms and I'm trying not to celebrate that I can get treatment.  I don't know if it will work and I'm afraid I will be disappointed.  At least I have a chance now.

[PlateletGal]

This is what is happening not only with lyme, but CFS as well. (since an estimated two-thirds of CFS patients have an L-form bacterial infection). I think your immune system was healthier and more able to tolerate the bacteria when you were a child. However, later on in life... if you get a virus, the flu or are under a lot of stress.... your immune system will run down and then all of a sudden, you will have additional symptoms.

I'm seeing this over and over again not only with lyme, CFS... but even people with other chronic illnesses.

[margypops]

I also have had the same symptoms you mention for over 20 years since I was bitten by a tick, it hasnt always been presant, I have had one negative test, and a lot of other ideas from the Meical profession over the years dont go now for more of the same..I assume that the anti biotics one takes for varying other things has sent it into remission, at presant I have a lot of symptoms again

[patsy10]

My bullseye rashes were 17years ago and I still have symptoms.  So It's quite possible you have had it a very long time.

[DianeRN625]

Hang in there. I was misdiagnosed for 10 years and then finally put on IV rocephin and felt better in 4 days than I felt in 10 years.  Yes, the treatment can sometimes seem worse than the disease - herksheimer reactions are NOT fun but I always remind myslef that it is a sign that the bug is dying off and it also reminds me that I am not crazy and I really do have chronic lyme disease even if some people deny its existence.  I have been on/off IV rochephin several times over hte last 12 years and I have now been "in remission" (opn oral antibiotics only and feeling pretty good) for 3 years.

Don't give up and don't be afraid to take the antibiotics - it's worth the herks (or at least th ememory of the horrible herks fades as you start to feel better na dget your life back from the lyme symptoms. :)

[jason80]

I just wanted to follow up on a couple comments.

1) I'm too lazy to check but I thought that ILADS also gives duration guidelines for tick bite to be infectious, it's just that it's much shorter, something like ~6h? whereas CDC stated 24h.

2) I agree with Jackie -- the bizarre thing is that IDSA only allows a short treatment of abx ANYWAY, so why are they so scared to give 1mo treatment? If they really believe 1mo provides total solution, why would they ever begrudge us poor souls this? This is really the bizarre part.  

I won't question anyone's decision to take abx when they are suffering the way we do. Ironically, I expect our friends and families to be much more willing for us to take abx because they don't really appreciate the time/investment/risk made in going down this path. For the less informed, it sounds much safer, like treating other common bacterial infections. It's obviously a much more weigthy decision.

p.s. Hope, you are the only other person I know that has Osgood Slatters sp? I got that about age 13 and have very bony knees. In my case, I think it was due to a growth spurt. My brother and I both have scoliosis so I think in my case it is just genetics, but you never know.

[Hope75]

Thanks wonko and JackieCalifornia.  It's good to have some back-up:)  I am hurried at this moment, but I will post something I just received via fax and then I gotta run until later today....

[wonko]

I went through a nearly identical stage of speculation/realization over the onset of my illness.  I don't recall a tick bite in my life, which fuels my questioning.

I know precisely when the onset of my acute symptoms began.  But much like you, I can trace back much further to medical events in my life that were of unknown origin.  As an adult, I don't enjoy the outdoors and don't even go to picnics.  But I grew up in endemic Western New York, spent my summers camping in the Adorondaks, and countless weekends at my parent's cabin located on undeveloped acerage in the Finger Lakes region.  

So did I really get infected just over 2 years ago, while living in West Philadelphia as an avid indoors person?  Or did I pick this up long before and simply "awaken" it when, two+ years ago, I got several simultaneous infections after a very high-stress time in my life?

Throw possible reinfection into the mix.  Who is to say that me/you/anyone else didn't have a "quiet" infection that was then made active by a second exposure?  I currently live in a suburban endemic area.  Though I still don't enjoy the outdoors, I work on a "park-like" campus with hundreds of deer and other woodland tick hosts.  Knowing my diagnosis, I now only walk through the middle of paved/concrete paths to and from my car.  I'm literally scared to cut across the grass anywhere!

I'm not trying to hijack you post, just sharing how similar (and sometimes maddening) my concerns over the origin of my illness are.

I agree with your risk/benefit assessment of trying antibiotics.  I still knew next to nothing going into my Lyme treatment.  After being told over and over that I didn't have Lyme, I was skeptical (silly me).  I'm glad you are getting acquainted with the many faces of this disease before diving in.  "Mandy" in "Under Our Skin" describes well how you reach a point where you are simply in a state of panic and desperate to get better, such that objectivity is often out the window.  I don't see a trace of that in you, and find your posts on your progress and process through all of this to be very thoughtful.

I too try to be cautiously optimistic...

[JackieCalifornia]

Bravo!  I applaud your courage, and agree with everything you say.

I have a dear friend who has had documented Lyme for over 20 years, and has never been adequately treated, still trying tho.

The whole thing about 'how long was the tick attached' is a red herring in my view -- I've NEVER seen any studies or data that says how long the bug has to be attached to transmit Lyme and other diseases.  If anyone has this data, please post the link.  It's more CDC/IDSA balderdash, imo.

Re risks of antibiotics:  MDs regularly prescribe antibiotics for acne, for ear aches, for dental work, for all manner of things, but when it comes to a horrible disease like Lyme, they suddenly get a case of the horrors?  It's Lyme politics ... again.  I'm sure your father is only concerned about your wellbeing, but it's the "There ain't no Lyme here!' crowd among the medical profession that is putting forth this hypocritical stance on antibiotics.

Oh golly there I go again, ranting.  Sorry!

I truly wish you well, Hope75, it sounds like you've been through quite enough for one lifetime.  

And PS, if you have children, you might think about getting them tested too.  There is such a thing as congenital Lyme...and kids are tough, so sometimes they get Lyme and are not flagrantly ill but just punkin' along not feeling so great without realizing it.  When I was diagnosed, I had my kid tested too on the theory that my kid had been everywhere I had been ... and what do you know, positive test for Lyme and babesiosis like me.  Now that treatment is well underway, said kid's comment is "I didn't realize it before, but I was tired all the time and not feeling really good -- I didn't know I was sick until I started getting better."  From the mouths of babes.

You go, girl!