Posted 1/29/2012 7:59 PM (GMT 0)
Hi everyone, what a wonderful thread!!!
After having Lyme and co-infections for approx. 7 years (after being misdiagnosed for several years) I was able to overcome it, to the point where I was virtually symptom-free. I had taken many different antibiotics throughout the course of my treatments, but amazingly enough, at the time of my recovery I was only taking supplements and herbal remedies. The only reason for that was that I was waiting to start taking rocephin (I had already had the pic line installed) but I was battling with my insurance company because they were refusing to pay for it, and it's a VERY expensive drug. During this fiasco, while only taking natural remedies (granted, a whole bunch of them) I miraculously began to see improvement, and eventually had the pic line taken out without ever taking one dose of rocephin. My symptoms were mainly cognitive/neurological, and very debilitating. Intense anxiety and brain-fog were the main culprits, along with fatigue, headaches, etc.
I remained nearly symptom free for almost 3 years, I had my old life back, went traveling through Europe, and moved to Nashville. Recently I've had what I guess would be called a "relapse", most likely because as more time passed, I slowly but surely got lazy about taking the supplements that helped me improve initially. I am currently trying to replicate exactly what I was taking before, and hoping that does the trick. All this background info brings me to my point.
Positive Attitude is KEY! I made absolutely sure, when I was going through the worst of it, and again currently, to maintain a positive outlook. I distinctly remember visiting one doctor, and as I began to say, "Well my illness is..." he stopped me and corrected me and said "The illness that is currently afflicting you...." I didn't really get the importance of it until later, but it made total sense. Separate yourself from the "possessive". It's important to not think of this illness as being "yours", or part of who you are. If it defines you, it becomes harder to escape from. Think of it as something separate, something that you can beat, and overcome.
I've noticed an interesting phenomenon over the years. Even when my symptoms were at their worst, when I would dream, I would never have any symptoms in my dreams. This made me really happy, cause I knew my subconscious didn't see my symptoms as part of who I was.
My best advise is just to give it everything you've got. I understand most people can't simply put their life on hold, but the more attention you give to bettering yourself, the greater your odds of success. How bad do you want it? Are you willing to commit to always getting adequate sleep? No caffeine or nicotine? Changing your diet? Going gluten-free? Taking a handful of supplements twice a day?
One of the top Lyme Specialists in the country, Dr. JOSEPH J. BURRASCANO, published a 33-page paper titled:
ADVANCED TOPICS IN LYME DISEASE:
DIAGNOSTIC HINTS AND TREATMENT
GUIDELINES FOR LYME AND OTHER
TICK BORNE ILLNESSES
In it, he says CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY
CLEARED:
The main ones are rules I listed above.
One last thing: xanax. For me, personally, xanax has been nothing short of a life-saver during the worst of it. Like I said, my symptoms were/are mainly brain-related, the biggest culprit being anxiety and brain fog. For me, even a moderate dose .5 mg of xanax can mean the difference between feeling like I'm going to die, and being able to leave the house. As long as you use is wisely and are careful not to continue to up your dose or develop dependency, it can be a miracle drug, depending on your symptoms. I use it as a barometer for my lyme symptoms. At the worst, I take two .5 mg pills a day, one in the a.m. and one later in the day when the first wears off. On better days, one pill will suffice. When I can get through the day without taking any at all, I know I'm improving.
I hope this info has been beneficial. Best of luck to everyone. Put a mantra next to your bed, "I am STRONG, I am HEALTHY, I am GETTING BETTER all the time."
-Nick