My view of Lyme Disease and the Controversy with the Medical Community

This is MY understanding of Lyme Disease - remember these are just my thoughts and opinions. 

Shall we begin?  Lyme disease sucks.......begin rant.......

1. A person is bitten by a deer tick. The longer the damn tick stays attached, the more likely it will transmit the Borrelia burgdorferi bacteriaand other pathogens into your bloodstream. If you are lucky and see the rash AND get immediate treatment, chances are pretty good that you may be able put the Lyme into remission.    


2. Whether  you see the rash or you think you have Lyme (based on the symptoms), the testing for Lyme is inaccurate and unreliable.  Standard Lyme tests measure the antibodies that are being produced after the insect bite occurs. Since Lyme wreaks havoc on your immune system, your body stops producing antibodies just a couple weeks after getting bitten, therefore making the test wildly inaccurate for any time a week after the bite.  However there are a few labs that have the best results in detecting Lyme disease.  Igenex is is one of the best.


3. It is Lyme not Lymes.  A major pet peeve is when I hear a "respected and knowledgeable" medical doctor refer to  Lyme as Lymes disease.  There is no S at the end of the Lyme.  Arrggghhhhh.  And they want me to respect their opinion about a disease that they can't even pronounce. 


4. The guidelines for treating Lyme Disease are outdated and don't help patients suffering with Chronic Lyme.  The Infectious Diseases Society of America (IDSA) sets the guidelines that the Center for Disease Control (CDC) must follow.  The IDSA lyme guidelines clearly state that  persistent/chronic/late-stage Lyme Disease doesn't exist.  This ignorant fact can be disputed by numerous published research and articles.


5. Yay for the International Lyme and Associated Disease Society (ILADS) - not the IDSA mentioned above.  Breaking news in Feb 2016 was that the National Guidelines Clearinghouse (NGC) –a federal database that provides treatment information to health care professionals and insurance companies–has removed the outdated and harmful IDSA Lyme disease treatment guidelines from its website recently. This means that the only Lyme disease guidelines listed on the NGC are those of  International Lyme and Associated Disease Society (ILADS), which were posted in 2014. This was a huge step in the right direction for the Lyme Community. 


6. When Lyme isn’t detected in the early stages, it becomes Chronic Lyme, a condition which the CDC and IDSA both deny even exists. They will continue to deny it, because if there’s one thing insurance companies hate, it’s chronic disorders they have to spend time and money treating. Insurance companies refuse to pay for any treatment beyond the 6 week treatment that Heather received in December 2014 and that DID NOT fix Heather.


7. What does this mean for a Lyme patient that is looking for treatment?  The patient must find a Lyme Literate Medical Doctor (LLMD).  Sadly, any and all expenses are out-of-pocket and are the responsibility of the patient to cover.  These LLMD are not trying to rip off sick people, they are doing research, modifying their protocols and trying to fix these chronically ill Lyme patients. The treatment is expensive and not covered by insurance.


8. Lyme Disease triggers numerous co-infections and autoimmune conditions.  


9. The majority of mainstream medical doctors are not educated about the existence of chronic Lyme and the symptoms.  They are quick to judge the patient and they disapprove of any treatment that the patient is receiving from a LLMD.  Trust me, the patient and their support system have done exhaustive research looking for answers and/or doctors to not only treat their disease, but to treat them with respect. 

Bottom line - there are too many people that are suffering because of Chronic Lyme disease.
Each year over 300,000 new cases of Lyme are diagnosed.  How many of those will be chronic cases - who knows?  This number will only be reduced with more research money to find better diagnostic tests, affordable treatment, and ultimately a cure.   We must speak up for those that can't.  Lyme disease is an awful and insidious disease.

I am in awe of your strength Heather.  You did NOTHING to deserve this. 

Sadly, our medical system is failing you and hundreds of thousands of other Lyme patients. 

They aren't ready, no let's correct that statement, they aren't willing to recognize that Lyme disease can be a chronic and the number of people infected is becoming an epidemic.


WE MUST FIND A CURE. 


Rant over......
xo

Lisa