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Delayed Lymes??

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Posted 1/13/2013 3:15 AM (GMT 0)
I was diagnosed with Chronic Fatigue Syndrome over 20 years ago.  At the time I was tested for Lymes but it was negative.  However, now I am wondering if I might actually have it.  Here's why:

I got a bite - don't know what as I did not see the bug.  It developed into what looks like the pictures I have seen of Lymes bites - it kept growing and developed that bulls-eye look.  However I did not get sick at the time.  about three years later I came down with mono and never got well.  Eventually my doctor diagnosed me with CFS after ruling out many other things.

I'm not sure if it is possible to not have any symptoms for three years after the bite.  Or whether I could have had it for over 20 years without having some reason to know that I have it.  I have not had the joint arthritis-like symptoms.  However I do have many of the others - fatigue, aches, difficulty concentrating/remembering, stomach problems, difficulty sleeping, etc.

Please let me know what you think about this.  I need to decide if I should go for testing again.  Thank you.

Posted 1/13/2013 3:33 AM (GMT 0)
Hi CraftieKittie,

Well, our stories are somewhat similiar..the CFS part anyway. I was diagnosed with post-viral fatigue (from Mayo) 17 years ago. They did not test me for lyme, though. I was bitten by lots of ticks as a kid, and some as an adult. But not within a year or more of getting sick, that I knew of. (you can get bitten and not be aware of it...e.g. by ticks in a young stage of life).

Yes, it is indeed possible for one to be without symptoms for years...then, when the body is under significant stress...accident, emotional, other illness, etc...the lyme can flourish and reproduce and start causing problems. (this is one theory of why one seems to "get" lyme without any sign of a bite.

Only 1/3 approx. of people develop the bull's eye rash.

HOWEVER....you did develop the rash? Dang...I'd say yes for sure, get tested. By an reputable LLMD or LLND..someone who knows how to test and how to interpret...the testing is sowewhat complex.

Anyway...I treated myself with acupuncture and many holistic treatments for many years and the fatigue got better..I was able to work at a job that I could stop and rest...but never got back to 100 percent.

Three years ago I got way worse...severe bad heart palps, (went to ER..they found nothing), severe fatigue, etc.

I found a good doc and got diagnosed with lyme at that point. so....I am sure I had it all this time. I never had a rash from a tick bite.

Also...it is difficult to diagnose. You must find an LLMD or LLND who can accurately go through the various tests. I had western blot, and blood sent to Fry labs for a kind of photo of the blood that showed one of the classic co-infections, bartonella. So this was conclusive.

Good luck! I have found this forum to be a weath of caring people and good info.

Keep us posted!
N
Posted 1/13/2013 5:44 AM (GMT 0)
Hey. Have you considered lyme coinfections, instead of lyme? Perhaps you are wrong or mistaken about the Lyme, or your immune system killed it off. Usually, from what I know, lymers experience at least SOME form of joint problem during their saga. I fractured like 7 different bones at or around the joint and I have constant pain or soreness at joints of certain areas of my body.

Ticks carry other illness-causing creatures such as Babesia, Bartonella and Ehrlichia. From what I see, Babesia causes a lot of problems resulting in a lot of the symptoms you are seeing. It is very hard to diagnose. SWIM bought a safe dose of antibiotics online in order to treat a suspected Babesia infection, but I would definitely consult with a Lyme Literate doc in your area if I were you. You can find the names of those online. Or, if you post it here, I am sure someone would be nice enough to give you a short list via email or something.

Nick
Posted 1/13/2013 6:03 AM (GMT 0)
Joint pain doesn't happen to every lyme patient. It didn't happen to me - not until after a minimum of a decade from being exposed. How lyme presents really varies from person to person.

The symptoms of lyme and the many co-infections often overlap, and I believe that it's rare to only have lyme without any co-infection. I have babesia and lyme and god knows what else.

What symptoms you develop depends entirely on where it affects you. It could be anywhere, and it's quite systemic.
Posted 1/13/2013 6:05 AM (GMT 0)
Wanted to add that I didn't develop life-altering symptoms until many years after being infected.

After being diagnosed, I can look back on the years I spend frequently feeling like I was coming down with something, then not actually coming down with something!
Posted 1/13/2013 1:03 PM (GMT 0)
Hi Craftkittie, it is definitely possible. There are a lot of different factors why it can happen, like the others said.

Can we help you find a LLMD?
Posted 1/13/2013 9:34 PM (GMT 0)
Yes, please help me find a LLMD.  I live about an hour's drive from Sioux Falls, SD.  If I can find a doctor there, that would work out very well.  Otherwise I could go to Brookings, SD or Marshall, MN.  Thank you.
Posted 1/14/2013 1:52 AM (GMT 0)
My Lyme symptoms/major flare started during the end of my second pregnancy (when the immune system is suppressed). Looking back, I had very mild symptoms for many years beforehand - fatigue, muscle stiffness and aching, neck cracking. I don't have any major joint involvement. My joints crack and are sometimes stiff, but most of my pain is muscular. And I had a positive Lyme test.
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