After two decades, over $70K, and at least 20 medical professionals, finally a diagnosis: Lyme.
I believe this is the last missing piece in my health puzzle. I would like to say I have simply been very unlucky and hit a series of dodgy doctors, but the truth is this situation is common.
Many people with Lyme Disease often spend years written off as other conditions of unknown cause: Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis, Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, Multiple Chemical Sensitivity and others.
Lyme Disease is caused by a spirochaete, a spiral shaped microbe known as Borrelia. The index cases were Borrelia burgdorferi, but several other species cause Lyme, and other Borrelia species cause relapsing fever and arthritis syndromes. It is mainly spread by arthropod parasites, particularly ticks. There is increasing evidence of spread by sexual contact and transplacentally to unborn children.
Due to the tireless efforts of patient advocacy groups and Lyme literate physicians, awareness is increasing. More long-term chronic illness patients are now realising they may have Lyme, and requesting testing. In addition, new cases of the disease are exploding all over the globe. This is truly an emerging epidemic.
Testing
The common testing protocols are antibody based. Chronic Lyme has an immunosuppressive effect, thus patients are simply not able to produce adequate antibodies. This means false negative test results are common. Repeat testing is often required, and it’s often only after treatment that the antibody response returns.
Other testing methods such as PCR, which tests for the Borrelia DNA in blood or urine samples are becoming more common.
Agendas and Cover-ups
How can so many Lyme patients go undiagnosed for years or decades?
Due to medical politics, many chronic illness patients were incorrectly classified as somatisation disorder/ conversion disorder (aka psychological). Hence the best case scenario is long term symptomatic treatment. Despite emerging research, this stigma remains. Many patients are still struggling to be taken seriously at all, let alone ever get to the point of testing for Lyme. Without specific antimicrobial treatment, long term undiagnosed Lyme Disease simply has no chance of full recovery.
Even worse, there has been an agenda in spreading disinformation that Lyme is:
- rare (or in Australia, that it doesn’t exist at all)
- hard to catch
- easy to test for
- easy to treat with short term antibiotics
- and that the severe long term form of the disease is rare
All untrue. Even with the best that science currently has to offer, long term Lyme is difficult to treat and relapses occur. Many Lyme physicians are now talking about remission rather than cure.
The reason behind this is a serious conflict of interest. The medical advisors to the US Centre for Disease Control and insurance companies were also the patent holders to the (failed) vaccine. The Lyme conspiracy is truly shaping up to be one of the biggest medical scandals of our time.
There has been a smear campaign on both patients, doctors who treat Lyme and Lyme researchers. Many US, Canadian and Australian doctors have been forced out of practice, and other doctors are afraid to risk their careers to treat Lyme patients. It is common for Australian patients to have to travel overseas for treatments.
I am currently deep in the rabbit hole of follow up testing and trying to find a Lyme-literate practitioner, but will write more soon.
In the meantime, some useful links:
General Lyme Information
Lyme Disease Association of Australia
Under our skin (2008) A documentary on Lyme disease, explaining the agendas behind denying chronic Lyme. You can rent or buy the film here
Under our Skin 2: Emergence (2014)
The sequel to Under Our Skin – follows on from the patients and doctors from the first documentary. Rent or buy the film here
Lyme Cryme (2016)
A documentary that goes much deeper into the scientific detail and events behind the Lyme conspiracy scandal
The Lyme Cryme website also has a lot of background information
The politics of CFS/ME
Thirty years of disdain: How the HHS and a group of psychiatrists buried ME(2015)
This is a document released by Mary Dimmock, a pharmacist whose son came down with ME/ CFS. It is a timeline of key events and references, in how ME became reduced to the vaguer label CFS, and became classed as a conversion disorder.
It is quite science heavy, so there is also a shorter summary version.
Both versions are in the Political section of the ME Advocacy website (this whole site is well worth looking over).
For more insightful thoughts on living with chronic illness, you can also follow Von Danse on Instagram @theTangledPath
This blog is for educational purposes only and not meant as a substitute for medical care.
Your thoughts?