Unexplained symptoms suddenly cropping up is a scary prospect for most people. The first place you’d likely go to find comfort and treatment is your local doctor; millions of patients visit their physician every year to address a spectrum of worrying signs and symptoms, and most go on to find treatment. What’s even more scary than the symptoms themselves, however, is the prospect of your doctor not believing you. This can cause a whole gamut of fresh distress for patients, as the person they turn to for help in medical situations is dismissive of their worries. Take Morgellons disease, for example. This rare, unnerving condition is not medically recognized by an official body, despite many thousands of people coming forward with symptoms. So what can you do if your doctor doesn’t believe your Morgellons disease symptoms?
Morgellons presents with the primary symptom of numerous sores or lesions all over the body, as well as bizarre colored fibers that emerge from these sores and grow under the skin. On top of these disquieting symptoms, patients also report itching sensations all over the body, and a sense that bugs are crawling around under their skin. So why wouldn’t your family doctor believe what you’re telling them about these unique (and unquestionably specific) issues? Unfortunately, it comes down to that last symptom – the sensation of bugs crawling under the skin. This is the exact description of delusional parasitosis, a mental disorder where patients genuinely believe that there is an infestation of insect creatures in their body.
In terms of Morgellons disease, it’s not that doctors don’t believe the patient’s symptoms, as such; rather, it’s that they’re inclined to write the symptoms off as products of a mental disorder, rather than a physical ailment. For many patients who are totally confident they’re suffering from something physical, this can be a frustrating experience. On top of not leading to any treatment paths, it can also compound the mental anguish many patients go through when they’re suffering from these symptoms. It can often feel like you have nowhere else to turn, but if you’re worried you might have Morgellons disease and your doctor has dismissed your fears, there are some things you can do to take back control.
The first thing to realize is that you are not alone. While this can sound trite, it is a practical piece of advice in the age of the internet. Yes, Morgellons disease can be absolutely terrifying, but the good news is that there are thousands of other people all over the globe who report similar symptoms. Faced with repeated dismissal by doctors, these patients have come together to support each other in the form of numerous online help groups. A cursory Google search will turn up a number of online forums and communities where worried patients can go and discuss the disease with each other. (This ‘Morgellons support’ Facebook page alone has over two thousand members.) While this doesn’t necessarily lead to treatment, it can be a great way of showing solidarity between sufferers, and easing the fear of going through something harrowing alone.
The premier support group for Morgellons disease is The Charles E. Holman Foundation. This should be one of the first places you turn if your doctor isn’t taking your claims seriously. The C.E.H. Foundation is a grassroots organization whose goal is to spread information and understanding about Morgellons to others. They are also actively researching the disease, and are constantly on the lookout for new treatment options. Their website has a number of resources for Morgellons patients; they take the disease very seriously, and are conscious of all the stigma and mental anguish that many Morgellons patients face on a daily basis. In addition, they also have a specific page dedicated to how to talk to your doctor about Morgellons disease, which might make it easier for people having trouble communicating with their health care provider.
On the treatment front, there is recent evidence that cases of Morgellons are linked to chronic Lyme disease. In a recent study, as many as 98% of tested Morgellons patients were also found to be infected with Lyme. The opposite (that the majority of Lyme disease sufferers had Morgellons) was not found to be true, meaning that Morgellons may in fact be a rare yet specific co-infection or malfunction of the immune system, initiated by Lyme disease. If you’re worried about your symptoms, a practical first step is to get tested for Lyme disease. (Germany’s BCA-clinic is a renowned place for Lyme testing; they have been specializing in chronic Lyme disease for many years, and their blood tests are some of the most accurate and professional in the world.) If it’s revealed you also have a Lyme infection, you can at least start dealing practically with that, and focus your mind and health on a common goal.
Morgellons disease symptoms can be extremely disconcerting, but the important thing to remember is that many other people out there are suffering through the same thing. Don’t be afraid to reach out if you’re getting nowhere with your regular doctor.