One of the really hard things about having chronic Lyme is that it is a condition that few understand and many don’t believe is real. Meanwhile people are dying. Public understanding is a really important part of having any potential to change. Please educate yourselves, your families, your co-workers, and your health providers. People living with it need your support, too. Make Skype dates with folks who are isolated from illness, bring soup when people can’t cook, offer to grab meds. There is so much hard, let’s lighten these loads a little.
Urgent fact #1: Chronic Lyme is degenerative.
Without treatment, the infection will continue to grow and the damage will become irreversible. Without treatment, the infection can get into a person’s heart and cause heart failure. It can get into a person’s brain and cause fits of swelling that will drive people into a suicidal frenzy (whether or not they actually want to die). People with chronic Lyme are fighting for their lives.
Urgent fact #2: Chronic Lyme is not recognized by the Centre for Disease Control.
This doesn’t just mean that a person has to pay for treatment, it means that treatment is illegal. Medical clinics are being shut down. People are turned away from hospitals. If you have an emergency and say you have chronic Lyme, you are likely to have your very real symptoms dismissed: for example, I went to the hospital for acute, classic heart attack symptoms and made the mistake of mentioning my condition (Lyme can cause heart issues) and was subsequently dismissed and told to take an Ativan to “calm down.” They had previously been taking my symptoms seriously.
Urgent Fact #3: Mis-diagnosis is frequent.
Chronic Lyme is a like a big cooking pot where hundreds of symptoms from dozens of diseases get poured in. If you have chronic Lyme, it’s as if you got a big ladle full of the disease soup–whatever is in that scoop is your particular dish of symptoms. Folks needing a diagnosis of chronic Lyme are often likely to be given many different diagnoses, the treatment for which could end up making Lyme worse (e.g., I was given an asthma diagnosis and put on steroid inhalers–steroids actually feed Lyme!). While some symptoms might be somewhat reduced from treating other conditions, the actual cause remains unaddressed. Lyme is degenerative, misdiagnosis is a huge issue!
Urgent fact #4: This is all very unethical!
Why does a person have to find an expensive doctor who is flying under the radar (impossible in Canada) and pay out of pocket? Why are folks who cannot do this being left to die? One reason is that there is an abundance of unethical crap going on. People on the board that approves treatment are share-holders with insurance companies that don’t want to pay for long-term treatment.
This documentary is the best source I can recommend for learning more:
I highly recommend this film for so many reasons: it allows you to see how hard the struggle is for people with Lyme, it gives a better understanding of the political climate, it shows how much brutal, but effective treatment helps! (You can stream it for free from a number of different places, depending on where you live.)
This is a difficult post. I can’t put a nice spin from here. People are dying. They don’t need to be. We’ve got to speak up. (Also, if you think you might have it, please start the process. Don’t try to wait it out to see if it gets better or just hope that maybe it’s something else. Sooner is better!)