For some reason doctors very simply turn away patients who’s symptoms of Lyme Disease are persistant. They are told that if they still have symptoms after 3 weeks of Doxycyclene, they either never had Lyme Disease to begin with, they have “Post Lyme Syndrome” or “it’s all in their head.” Either way, it is very condescending and really a crime. People are left suffering with chronic symptoms that are caused by a multitude of infections, viruses, parasites and other things that stem from or started with, “Lyme Disease.”
The part, that as a Lyme patient myself, that I don’t understand is that when I look at what the CDC and IDSA guidelines say, they DO mention persistant infection. They do say it can cross blood brain barrier and lead to neurological, cardiac and a persistant infection. So where is the miscommunication? Why are we protesting the IDSA and CDC?
Here’s the problem. On their website they are very contradictory, saying in one paragraph that it can be a long term treatment and that iv antibiotics are necessary. Then on another they say that most patient’s Lyme Disease clears up with a small course or Doxycyclene or Amoxicillin. They say only a very small amount, 10 – 20% go on to have persistant symptoms.
Personally, I know several people who have been treated right away, right after a tick bite and they still have persistant symptoms years later. Is the problem that there has been no new research in years and the CDC and IDSA are just dead wrong? There information is old and not applicable anymore?
I’d like to bring up the IDSA guidelines authors, who write the Lyme Disease Guidelines that are used around the world. Some of these researchers have proven that there is chronic Lyme with their own research. But, somehow, years later try to reverse their positions, but without further evidence of why they chose to do so.
To see that what I’m saying above is true, click on any of these links:
The CDCs recommendations for Treatment
http://www.cdc.gov/lyme/treatment/
Click Here to see the CDC’s thoughts on Long Term Treatment
http://www.cdc.gov/lyme/treatment/prolonged/index.html
Click Here to see the IDSA Lyme Guidelines
http://cid.oxfordjournals.org/content/43/9/1089.full
Unfortunately, for us, Lyme Disease and other co infection are not easily detected, diagnosed or treated. There are new strains/species being found each year that are not being tested for. The tests being used in our doctor offices are not accurate. Better qualified labs are not being used. Therefore, patients are not getting diagnosed quickly.
From what I personally see in my Lyme support group, patients are not diagnosed for years with Lyme Disease and once they are, they are put on very strong treatments of multiple antibiotics, oral and iv, herbal treatments and on very strict diets, and are still very sick. Lyme Disease is definately persistant.
Whether it’s because it took too long for them to get diagnosed or not, seems mute at this point. The fact that is being ignored by the CDC and IDSA is the point. There are thousands of people suffering with Chronic Lyme Disease that are being ignored by the medical mainsteam and having to seek out alternative treatments, underground treatments or even having to become their own doctors.
Let’s let research speak for itself.
Research Proving Lyme Disease is Persistant
Formation of ‘dormant’ Borrelia stages
Monkey-Persistant Lyme Research
The Case For Chronic Infection: Evidential persistence of Borrelia species post antibiotic exposure in vivo and in vitro
New class of Toll-like receptor 2 ligands capable of enhancing autoimmunity
Long-Term Antibiotic Therapy Improves Persistent Symptom
73 peer-reviewed studies showing that Lyme disease can persist or relapse despite antibiotic therapy
Research on Seronegativity- Why we get false negative tests
Lyme Disease Medical Literature Summaries
All of this is just the opinion and experiences of me, a Lyme patient. Let me know what your opinions and experiences are.
~ Lisa Hilton
