Lyme disease complication?

[Cherie314]

Two years ago, i was diagnosed with Lyme disease after a positive titer test.  My tick bite was on my head and the site of the bite became very painful and infected.  I had a tough case to treat and went through 4 months of doxy treatment.  In the 4th month, i stopped treatment because all my teeth had suddenly become very loose ( apparently a side effect).  Last year, i was diagnosed with Lyme again after another apparent bite.  My titer did not come back positive but it felt exactly the same as the first time, and i had a tick bite and rash.  I was treated and am mostly fine.  Both times, i developed shingles after lyme so i was a mess for months.

Since my first lyme exposure, i periodically ( every few months) develop a very high fever ( typically near 104), my head hurts, nausea, achy.  I would swear it was meningitis each time but it feels exactly like i felt the first time i was dx with lyme.  I am terrbly ill for about 24-48 hours and gradually recuperate.  My heads always splitting, im achy with chills.  If it happens at work, my coworkers fear i am dying and want to call 911.  My family has grown used to t and leave me be.  I feel like i am seriously ill, but i know it is temporary.  My doctor has no explanation for the unexplained high fever.  Some part of me believe the lyme is still in my body and rearing its ugly head.  But i am told thats impossible so i have no idea.

Anyone else with a similar issues?

[JackieCalifornia]

and PS, the waves of feeling lousy that you get are not unusual in Lyme.  They go away when proper diagnosis and treatment are done.

[JackieCalifornia]

Welcome to MedHelp Lyme -- sorry to hear you are having continuing issues.

You say, "I feel like i am seriously ill, but i know it is temporary."  Maybe, but *two years* of an illness is not what I would call temporary.  (But I'm not medically trained, so that comment is fwiw.)

"My doctor has no explanation for the unexplained high fever."  Have you considered finding a new MD?  There is a huge split in the medical community between those who think Lyme is no big deal, compared to other docs who take it more seriously.  

You say:  "Some part of me believe the lyme is still in my body and rearing its ugly head."  I would think that same thing.

You say:  "But i am told thats impossible ... ."  This sounds like a doc who is in the 'Lyme-is-no-big-deal' camp.  I personally went through ~20 MDs before I was finally diagnosed with Lyme disease, and once properly tested and evaluated by a Lyme specialist MD, I was treated with particular antibiotics for an extended period of time (months, not a few weeks), and I remain entirely well now, after more than 5 years of diagnosis.

Your profile above doesn't say what part of the country you are in, but in some places it's easier to find enlightened MDs who really do understand how to diagnosis and treat Lyme.  There is an organization called ILADS (International Lyme and Associated Diseases Society), which has a website about Lyme (tho a lot of it is aimed at MDs, it is interesting reading nevertheless), and if you go to the ILADS website, there is a referral function to pass along names and contact information for ILADS-member MDs near you.  If you don't click with the first doc you are referred to, then ask ILADS for another name.  

Lyme is a new and developing illness that the medical profession is still learning about, so not all Lyme docs are the same.  Your doc sounds like one of the old guard, who still follows what was thought about Lyme when it was first 'discovered' a couple of decades ago.

If you find you don't click with whatever doc you find through ILADS, don't give up, and try another ILADS referral.  It's what I would do if I got Lyme symptoms again.  Keep us posted, and all good wishes!