I have spent my last year of recovery desperately trying to figure out what I did wrong and how I fell through the cracks, not receiving appropriate treatment for lyme and missing diagnosis. It took a while to fully accept that I did not fall through the cracks. This is how treatment is missed and ignored in the Lyme world, over and over again. My story is identical to thousands of others.
Author Lori Dennis, Lyme Madness explains more:
I think the most important part of Lyme is that each patient should have all the information so that they can seek the help of a medical professional and make appropriate decisions knowing they have considered all the facts. Lyme is curable in its early stages, so it should be something that is ruled out first, not diagnosed by process of elimination.
Things to consider:
Canadian’s are following Infectious Disease of America (ISDA) guidelines which have been noted to be outdated. They are based on old science. And since then there are hundreds and hundreds of studies that support a different protocol, that has yet to be considered.
OTHER APPROVED GUIDELINES
The International Lyme and Infectious Disease Society (ILADS) have approved guidelines that include science and specialists from all over the world.
They hold regular conferences, share recent scientific findings and collaborate on treatment protocols and success. The guidelines clearly explain where the old guidelines fall short.
They typically support a slightly longer course of antibiotics to solve this illness (in its acute form). Pretty simple solution if you ask me. Scroll down to Executive Summary: http://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900
THE ONE DAY DOSE DILEMMA
Many people do not receive treatment after a bite, but if they do it is often two doses for one day of doxycycline. It should be known that this is based on one study that is over 10 years old and only shows treatment of the lyme rash, does not prove to kill the Lyme bacteria. Oh and it only cured the rash in 80% of a very small test sample. I enquired about this further with a Chief Medical Officer and was told, it is really considered a prevention (assuming Lyme has not yet entered the body), not a treatment. Many people believe they are being treated.
Another thing you have to make note of when accepting the one-day dose is that it will likely mask or delay many of the Acute Lyme symptoms that would warrant treatment. It is meant to alleviate the rash and that is the one symptom that will encourage doctors to treat Acute Lyme.
EARLY LYME IS ALMOST IMPOSSIBLE TO DIAGNOSE
I lived it myself and I hear it all the time. The early symptoms, typically after 30 days, are incredibly easy to pass off, make excuses for or consider part of aging. They are so subtle they are often mistaken for a stressful period, being overtired or the feeling that you are fighting something. It never amounts to enough for anyone to get concerned. My best suggestion is if you know you had a tick bite, you should demand treatment with the tiniest, most subtle change in your health. It is likely related and with a course of antibiotics early on, it is very easily cured. Don’t waste time and wonder, because it can become too late. Note: More than half of Lyme patients, don’t even know they were bitten (that’s a whole separate conversation).
See guidelines for appropriate treatment:
DO NOT WAIT FOR TESTING
Not only has the testing proven to be too inaccurate to provide a diagnosis, it is not recommended for 4 weeks after the bite (it tests for antibodies that take time to develop). At that point early treatment would have already resolved he issue. The Ontario Minister of Health sent a letter to Doctors last year starting that testing is to only support a clinical diagnosis. You must rely on symptoms and risk to determine treatment.
24-36 HOUR RULE
See my previous blog on Prevention to learn why you do not want to rely on the 24-36 hour rule to wait for treatment. This is a protocol many doctors and hospitals insist on that; the tick was attached for that time before treating. Science is showing that is not reliable and you should not assume you have not been infected in less time. http://outofthewoodz.blogspot.ca/2017/04/lyme-prevention-what-you-want-to-know.html
RULE OUT LYME FIRST
Lyme is an illness that should be considered first. It is very easily treated early on with a very common dose of antibiotics. Patients often seek treatment after they have gone years ruling to everything else. That is when it is too late and at that point doctors cannot legally prescribe in Canada, the dosages that are required for remission. This is one disease you must be your best advocate for. If you do then you will not have the same regret I do, when I let doctors belittle me and convince me I was crazy when I questioned Lyme.
I hear it time and time again…patients are told they are self diagnosing, reading into their symptoms or don’t understand Lyme. Learn from me and millions more who ignored their gut instincts and let the professionals convince them differently. They were wrong. Unfortunately, with this illness, when it gets bad enough to prove you were right and they were wrong, its too late. Just remember, if the professionals are wrong, there are no long term consequences to them. The only one who suffers for the rest of their life, is you. If I could do it all over again, I would never give them that much power. Trust you, trust that you deserve better for you and your health, trust that you deserve respect. That’s my basic desire for those suffering with this illness (now and in the future) – the respect they deserve.