Jun
15
Written by:
Emily Sherman
6/15/2010 10:11 AM
If you have Lyme Disease, researchers need your help. Donate plasma and receive $400/donation for your time. Visit www.idonateplasma.com for details.
|
Lyme Disease Blog – A 100,000/yr person strong dilema
Lyme Disease has long baffled the healthcare community. With testing being iffy at best, individuals with Lyme Disease may find doctors leery or unable to diagnose or treat them for months or even years, all while their disease progresses into a debilitating tragedy.
Currently, the CDC’s standard (http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm) for diagnosis requires either a solid combination of objective physical findings such as facial palsy, arthritis and the bull’s-eye rash (erythema migrans), or a combination of a positive enzyme immunoassay (EIA) or immunofluorescent assay (IFA) followed by a positive Western immunoblot test.
The problem: not all Lyme Disease cases exhibit the same physical findings (signs and symptoms), and the testing available is iffy at best.
As a result of the desperation to get a diagnosis and end the horror that is their pain, people are forced to take their diagnosis into their own hands. Some people seek out doctors who are willing to treat them regardless of their test results (often putting patients on long term antibiotic treatments, potentially missing what could be a different disease), or they seek out testing facilities whose tests will say they are positive (even if they are not, again missing what could be a different disease).
In my experience as a patient recruiter for a diagnostics research company, this desperation often leads people to blind themselves to getting an objective diagnosis and treatment. But such a person can not be blamed, because it is next to impossible to find anything objective when it comes to Lyme Disease.
Take into consideration the following rant:
Patient comes in with Lyme Disease symptoms, but no rash. Doctor can’t diagnose based on CDC’s standards, so must make a gut decision. “Do I prescribe antibiotics?” “If I do, and they have something different than Lyme, they could get worse”, “If I don’t prescribe antibiotics and they do have Lyme, they could get worse”, “If I prescribe antibiotics all the time in these cases, I could be adding to the major problem of antibiotic resistance bacteria in the world further hurting other people”, “If the patient takes antibiotics and doesn’t get better, and I leave them on antibiotics, I could cause major harm to their body, and further create antibiotic resistant bacteria that could harm other people”, “But some studies show that prolonged antibiotics aren’t bad”, “But some studies show they are bad”…
As you can see, it is a lose-lose situation for doctors and patients alike. There is not enough information for doctors to make informed decisions, and the information that is known there is disagreement on whether it is accurate. The only solution seems to be better utilizing existing testing methodologies and/or creating new more accurate tests to reduce the misdiagnosis’.
Perhaps 100,000 emails per year to the CDC and local policy makers might make a difference in pressuring further investigation into these opportunities:
Email the CDC: http://www.cdc.gov/contact/index3.htm
Email your Congressman: http://www.yourcongressyourhealth.org/?gclid=CO2kxuWtoqICFcl25Qodaw2Axg
1 comment(s) so far...
Re: Lyme Disease Blog – A 100,000/yr person strong dilema
Good to read this on Twitter.
Many patients have a similar experience to myself where a chance course of antibiotics significantly improves chronic symptoms. In my case it led my GP to suspect lyme Disease and documented on her computer were the times I had visited the surgery with bites, rashes summer flu' and migrating arthralgias before declining into chronic ill health.
As my symptoms deteriorated I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal illness, Polymyagia Rheumatica and then Lyme Disease.
I was at that point so ill and in such pain that I wanted my life to end, for me taking antibiotics was a win win situation. Death would have put me out of my misery and if they worked as they appeared to be doing I just might get better.
Thankfully on long term antibiotics, a clinical diagnosis by a LLMD I have my health and my life back.
Until testing can be improved emphasis must be on a clinical diagnosis.
By Joanne61 on
7/24/2010 4:00 AM
|