? lyme despite negative testing

[hikerunner]

Thanks doctor for your reply in advance.

I had so many of the neurological symptoms that I see posted all the time on this neurology forum.

I too came here looking for answers to my symptoms.

Since many of lyme symptoms present as neurological such as tingling, light sensitivity, and numbness then people with those symptoms would naturally come here looking for answers.

I found out that I have lyme despite initial negative tests. My further testing finally came back positive.  Because of my orginial negative testing, and doctors using this as the sole diagnosis criteria, I believed I did not have lyme and went undiagnosed for months.

Since you said that this is an education site then I think this is a good educational post and I hope you will reply.

My question is:

Does it seem to you that there is an increase in the amount of people that really do have lyme despite negative lab testing?

It is a shame that people are not getting treatment earlier if they really do have lyme because of possible inadequate lab tests.

I am sure you are doing your part to educate the CDC and other doctors that lab tests should not be relied on alone for a diagnosis of lyme.  Better lab tests too.

I hope that education gets out there that lyme should be a clinical diagnosis based on symptoms.  Maybe even try a trial antibiotic course if no other explanation comes up for people's symptoms.

If you have lyme you know when you go on a trial antibiotic course.  You get worst before you get better.  That is how I found out.

Thanks in advance.

[CCF-Neuro-M.D.-SH]

Please keep in mind that I am unable to diagnose you since I am unable to examine you and this forum should be used for educational purposes only.  You describe a very common problem with diagnosing and treating lyme disease.  If a patient presents after a tick bite in a lyme endemic area, treatment should begin immediately with antibiotics (amoxicillin or Augmentin for 28 days) and lab tests should be ordered to confirm the diagnosis only.  However, in 30-50% of cases the tests can be negative despite true disease.  This is becuase Borrelia burgdorferi (the spirocete that causes Lyme disease) is immunosuppressive and inhibits antibody production and thus the tests often appear negative until treatment has been started and reduces the affect of the Borrelia burgdorferi. Thus Lyme disease remains a clinical diagnosis and requires a clinician sensitive to the devastation this deisease can cause.  There are many neurologic effects of Lyme disease, if it causes an encephalitis/meningitis (brain infection, brain covering infection).  It is important to keep in mind that Borrelia burgdorferi can reach the nervous system within 12 hours of a tick bite, and treatment should be started early.  Some diagnostic tests used for Lyme disease patients include MRI brain (to evaluate for encephalitis) Lumbar puncture (to evaluate for meningitis) EMG (to evaluate for peripheral nervous system involvement) SPECT scan (to evaluate for vasocontrictive disease that can lead to increased presure, headaches, and cognitive/psychiatric problems).  Chronic lyme disease is contributed not only by untreated or under treated disease, but also by coinfections that can occur with tick bites including Erlichia, Q-fever, babesiosis, Rocky-mountain spotted fever.  I hope this has been helpful.

[jan]

I live in NJ and my husband was recently bit by a tick.  The bite got infected so he went to the dr.  The dr. said it wasn't Lyme, how did he know?  He gave him antibiotics for a week.  I am really worried that we are going to pay the price later.

I had a rash, years ago, that sort of sounds like the rash described.  It lasted a long time, it started as a small rash that grew bigger as the center cleared.  Not exactly a bullseye, but could it have been that?  We did find a tick in the bed.  That year was a really bad year for ticks!

I have so many health problems, I guess many started before that, but here's my unbelieveable list of ailments:

MVP, MR, TR,  Inappropriate Sinus Tachycardia, Neurocardiogenic Syncope, IBS, (dysautonomia)   Raynaud’s, costochondritis, Narcolepsy,  cervical spondyloarthropathy (herniated disks and all the stuff that goes with it), radiculopathy, arthritis, TMJ, granuloma annulare, skin cancer, Grover’s Disease,  Factor 5 Leiden,  temporal lobe dysfunction, epilepsy, myoclonus, clonus,  interstitial cystitis, ulcerative colitis, narcolepsy and will be getting tested for suspected apnea. I had epilepsy, but hoping I am ok now.

Is that unreal or what?!!!!

[jan]

I was tested 3 times with the Elisa and Western Blot and was negative.  I was diag with MS (I have 3 lesions in the corpus callosum), but then was told by an MS specialist that I didn't have it.  I think my neuro still believes I have it, but I haven't had a new lesion in 8 yrs.  Symptoms keep popping up and my neuro exam is never completely normal, there is always something.

I copied/pasted the dr's response and emailed my husband.  Yeah, we email each other.  LOL  I wish he would take it more seriously!  I think part of the problem of him not wanting to go to the dr's, other than being a man ;o), is because he sees what I have been through.  I have soooo many specialists, it's a wonder I'm not completely bonkers.

Thanks for sharing.

[curiouskid85]

do most people, who think they have lyme and get tested, get a negative result and then go on to be diagnosed with depression and anxiety? and then do doctors begin to diagnose you with other problems, some even serious? i swear i have lyme, probably chronic,  but my test was negative, of course! knowing you probably have lyme, being told you're crazy, then being told you have other, actual, medical problems WILL make you crazy! today i was told i have narcolepsy... w t f? i just had TMJ surgery (second one in 3 years, might i add!). i'm only 21. i wanna do well in school. i want a life. but no, i'm crazy. and lazy (narcolepsy). why do doctors waste so much time and money rather than just give a clinical diagnosis for lyme and treat. UGH!

[curiouskid85]

can lyme trigger narcolepsy?

[jan]

I just did a quick search for lyme/narcolepsy and found a site that listed narcolepsy as a symptom.  I was curious since I was just diagnosed with narcolepsy, too.   As you see above I have many strange ailments, I saw some listed and I had a rash that fits the description, but I've been tested 3x's.

http://lyme-disease-symptom.com/  is the site.