It is bad enough to suffer with the profound fatigue that accompanies chronic Lyme disease. People can’t understand the agony of trying to hold your head up when your body shakes with the effort.
You have to experience it to understand it, and yet those who don’t understand think (and say to us), “Oh, I know just how you feel! I get so tired sometimes I just don’t want to get out of bed – but sometimes you just have to make yourself.” (This is usually said with a staged smile as if there is actual compassion in the advice to essentially “Get off your rear end and get going!”
Who would CHOOSE to stay in bed for months and years?
Unfortunately the pressure we put on ourselves to “get better” is far harsher than the condescending support of well-meaning friends and family. It leads us to take drastic steps that are NOT in our best interest and make everything so much worse:
It causes treatment fatigue.
Dr. James Schaller describes “treatment fatigue” as a treatment that requires too many pills each day – even if they are supplements.
However, for me and many of my friends with Lyme this additional fatigue seems to come from trying to treat ourselves at different times – usually periods of great frustration which of course adds to the very stress we are supposed to avoid.
Dr. Schaller says,
“Self-treatment rarely leads to your cure.“
“We all know you should not be your own lawyer. And medicine is 500 times more complex than one state’s law. Being a top physician is not merely about the physician’s cognitive abilities, but it is about the broadness of that physician’s academic research in medicine and medical biochemistry. Due to the explosion of information about tick-borne diseases, I read 50 hours a week, and feel I am falling behind.”
“Some reject “experts” due to cost even when they use physician extenders–their level of expertise is much less. Others search the land of all answers–the Internet.”
“But the Internet also has every answer, including utter nonsense. And no group has the corner on false medicine. It is so easy to say this ultra-conservative group with only 100 percent synthetic drug options is the right thinkers, but you would be markedly wrong. Others feel only “rebels” offer effective treatment options, but their proof is “Ms. Jones felt better on treat- ment F.””
So if we are going to try treat ourselves…who will oversee our treatment to make sure we don’t inadvertently hurt ourselves?
It is so common to read enthusiastic reports from someone who has used a certain treatment protocol to recover and they are convinced that this treatment will cure EVERYONE!
So we try it, it doesn’t work, and we are much worse off than before. The depression is worse, the pain is worse, the stress is worse – and yes, we are even more tired!
Now which way to go?
To quote Dr. Schaller one more time:
“Some health care practitioners seem too narrow in their approach to treatment, while others are open to virtually everything. So patients get into a medical boat and push themselves out to sea. They read like crazy. They try treatments A through T. They read testimonials of hundreds of patients. They try a wide range of non- prescription options. Some days, weeks or months, they feel better. Other weeks, they don’t feel so good. They are upset. They ask themselves, “Why do I have to do all the work and learning?””
“This is not a good place for them to be. People exist who have already explored 98 percent of the things that those with Lyme are going to explore over the next ten years. They need mentors.”
Dr. Horowitz is a big fan of the Cowden Protocol, but even he has publicly stated that of the 3000 patients he has prescribed this treatment to only 70% have recovered using it. That percentage may seem high or low depending on who you are and what treatments you have tried, but even if you are under the care of a Lyme-literate doctor you can still get “Treatment Fatigue” from trying even one or two treatments that may go on for a year or more and nothing has changed.
One woman emailed me in sheer desperation after working with one of the top Lyme doctors in the country for 4 years. She was not getting better and feared she was actually getting worse. What should she do? (I recommended she stick with her doctor and be more vocal about her symptoms and her fears. Stem cell replacement in India? Probably not a good idea…stick with the top Lyme doctor and be thankful you can get there by car and that you actually have an appointment – unfortunately it may take longer to get better…the good news is that the doctor will know the latest and greatest treatment for her long before it shows up on the internet.)
It all comes back to living in the moment and following the doctor’s orders. If you don’t have any take an hour to listen to Dr. Burrascano’s advice on Youtube here.