Rocephin
A Holistic Approach To Treating Lyme
// Filed in: Lyme Disease Treatment|Lyme Disease Story
Q. I was diagnosed with Lyme last July (2010) after several neurologists told me I had a motor neuron disease - ALS (Lou Gehrig's Disease). My family and I were thrilled to find out it was Lyme as at least it wasn't a death sentence. But after nearly 6 months on IV Rocephin and other antibiotics and many supplements and 5 IVIg treatments to modulate my immune system - I am still not feeling much better. I do have more energy than before the antibiotics but my speech is poorer, my body twitches when I'm still and I feel a sense of vibration in my hands and feet. I have some joint pain in my elbow and fingers, but it’s not too bad.
I really love my Lyme doctor she listens and adjust my doses at my monthly visit. I fill out a symptom list every day ranking my symptoms from 1 to 10. I go weekly to her office for my PICC line to be checked by a nurse and they draw blood at that time to check things. I feel taken care of -- but I never thought it would take as long as it’s taking.
I had read at some point that you beat Lyme with a more holistic approach - can you elaborate on that for me? I know there are alternative medicine doctors and I went to one once - and she told me to use certain Essential Oils by Young Living - I used them for a while.
A. Your letter brings to mind that aphorism: What doesn’t kill us makes us stronger. Many of the strongest people I know are dealing with Lyme.
Yes, I take what I consider an integral approach to treating Lyme. An integral approach requires more than just treating with medicines and supplements. It also includes getting regular physical exercise, eating right, tending to your psychological/spiritual needs through a regular practice of meditation, prayer, affirmations (whichever practice suits you best), and finally, seriously considering your network of support including your close loved ones on out to the social systems that are available to you: your clinic, nurse practitioner, doctor, as well as the money you must generate, and/or the insurance forms you must navigate, in order to access all of the above.
I started my treatment with antibiotics because I felt (and my doctor observed) that I had quickly devolved into a very low-functioning state. Every one of my systems was affected and going haywire. After 6 months of antibiotics, a period that I honestly find very difficult to remember, I came to a crossroads. I had reached a point where I could no longer financially afford to continue on the antibiotics. I was feeling better, but not spectacularly so. My doctor was not enthusiastic about my decision but he sympathized with my dilemma, and going on his advice that something would be better than nothing, I then prescribed myself a treatment consisting of herbal medicines and a continuation of the supplements that he had started me on. I embarked on the beginning of my second phase of treatment with some real moments of fear. However, I felt deep inside that I had no choice but to get well and although I was still unbearably fatigued after a full nights’ sleep and had many other Lyme symptoms that could have depressed me, I never, ever lost the willpower to fight and get well. I didn’t want to die, and I’m stubborn.
As the months wore on, I was finally able to put two sentences together again and resumed my work as a professional writer. I was fortunate in that way. If I’d had to go to work outside my home, I probably wouldn’t have been able to stick with the routines I had developed in order to stay on the wellness path. I required lots of sleep, little or no interaction with people outside my inner circle, long naps mid-morning, daily walks, blankets piled on my lap. I had to remember to take the supplements at their correct doses and times. And most critically, I had to have the luxury of being able to take my time on assignments. If the editors I worked for at that time had been able to see me at my computer, they would have wondered about my frequent pauses to stare at nothing, my complete spaciness and inability to stay on task! If they hadn’t been utterly disgusted by the ugly rashes on my hands and fingers, they definitely would have been put off by the stammers and slur in my speech. Luckily for me, they never knew, they were usually too busy to talk on the phone, and I was somehow always able to meet my deadlines.
I think many of us get to a point in our healing where we look into alternatives because conventional therapies either haven’t worked, they aren’t enough, or they’re simply not affordable or available. I’ve often thought that hey, if there’s something, anything, I can do to speed up this healing process, let me at it.
I’ve also read about the essential oils by Young Living and looked into them a little. At one point, someone gave me several tiny bottles of elixirs that I tried. Alternative doctors, alternative medicines, and holistic or complementary therapies are familiar terms, even to those of us who prefer Western medicine. But we often read about or hear these terms referred to without knowing or really understanding what is meant by them. We’ll explore and define these terms in subsequent posts.
All good wishes to you my friend.
Comments
Darryl is back--Listen to his success story
// Filed in: Lyme Success Story
Pro bike racer Darryl is counting the days to an upcoming race in April. Twenty-one months of hardcore antibiotic treatment are now behind him, including IV Rocephin, Zithromax and a go-round of Flagyl and Mepron last summer.
Since this new chapter of life began, Darryl counts among his athletic successes the "Beach and Back" fun bike race, a twenty-six mile, grueling uphill bike course that kept him "in the saddle" for four-and-a-half hours. I don't know about you, but I can hardly stay seated for more than one hour, and that's without peddling of course, without having to stretch and take water breaks. You can hear the surprise in his voice, and the satisfaction at his accomplishment as he describes the effort it took to finish that ride.
Darryl's impressive athletic achievements are no accident. A self-described "numbers guy," he has long been a devout record keeper, tracking his heart rate and other bodily systems with the eagle eye of a master coach. In fact, he is a coach, and takes his role seriously. A handful of Lyme patients have been lucky enough to come into Darryl's orbit, and he helps keep them on track with their Lyme-related needs. Knowing the hell that awaits someone with a positive diagnosis of Lyme disease, he aims to mitigate the bureaucratic and other various challenges that await them.
Some of Darryl's key points for beating Lyme:
Be a warrior. Don't allow anything to stop you from seeking treatment. Darryl saw 35 doctors before receiving a positive diagnosis for Lyme. He is passionate about standing up for yourself in the face of stubborn insurance company policies. His advice when your insurance company refuses to pay for tests and/or treatment that you and your doctor know are necessary? Appeal, and stay with it. Do not give up the fight. If you can't do the fighting, get someone who can fight for you until you can.
Be organized and monitor your progress. Keep your medical files together in one place. Statistics such as test results, enzyme counts, heart rate, weight and the dates of measurement are important, and so are their fluctuations. I love this--Darryl uses spreadsheets to track his numbers. Why didn't I think of that? Carefully monitor your progress. Keeping track of meds, supplements and foods on a spreadsheet is a great idea too.
Put yourself first. We hardly even need to mention this one. While it seems like such an obvious point, it is nevertheless quite difficult for a lot of people to pull this one off. Are you the main caretaker for a busy family? Find a way to take time for yourself every single day. Get enough sleep. It takes whatever it takes to get well. Your family might have to adjust, but rest assured they'll be overwhelmed with relief when you get better.
And finally, exercise, exercise, exercise. That's a direct quote. Even Darryl's mom (who also has Lyme) rides the bike he gave her indoors, in front of the telly. Do what you can to sweat out the toxins every day. Build muscle, which will help your immune system build strength. Darryl addresses this whole issue of exercise with compassion for those of us who suffer with crushing fatigue. He's been there too.
The really, really great news? Darryl's better!
Get your water bottle, jump on your stationary bike, hop onto your mini-trampoline and put on your headphones. Listen to Darryl's interview here.
Listen to the entire interview with Darryl for free!
Podcast - This is a long interview, so it may take awhile to load, please be patient.
Since this new chapter of life began, Darryl counts among his athletic successes the "Beach and Back" fun bike race, a twenty-six mile, grueling uphill bike course that kept him "in the saddle" for four-and-a-half hours. I don't know about you, but I can hardly stay seated for more than one hour, and that's without peddling of course, without having to stretch and take water breaks. You can hear the surprise in his voice, and the satisfaction at his accomplishment as he describes the effort it took to finish that ride.
Darryl's impressive athletic achievements are no accident. A self-described "numbers guy," he has long been a devout record keeper, tracking his heart rate and other bodily systems with the eagle eye of a master coach. In fact, he is a coach, and takes his role seriously. A handful of Lyme patients have been lucky enough to come into Darryl's orbit, and he helps keep them on track with their Lyme-related needs. Knowing the hell that awaits someone with a positive diagnosis of Lyme disease, he aims to mitigate the bureaucratic and other various challenges that await them.
Some of Darryl's key points for beating Lyme:
Be a warrior. Don't allow anything to stop you from seeking treatment. Darryl saw 35 doctors before receiving a positive diagnosis for Lyme. He is passionate about standing up for yourself in the face of stubborn insurance company policies. His advice when your insurance company refuses to pay for tests and/or treatment that you and your doctor know are necessary? Appeal, and stay with it. Do not give up the fight. If you can't do the fighting, get someone who can fight for you until you can.
Be organized and monitor your progress. Keep your medical files together in one place. Statistics such as test results, enzyme counts, heart rate, weight and the dates of measurement are important, and so are their fluctuations. I love this--Darryl uses spreadsheets to track his numbers. Why didn't I think of that? Carefully monitor your progress. Keeping track of meds, supplements and foods on a spreadsheet is a great idea too.
Put yourself first. We hardly even need to mention this one. While it seems like such an obvious point, it is nevertheless quite difficult for a lot of people to pull this one off. Are you the main caretaker for a busy family? Find a way to take time for yourself every single day. Get enough sleep. It takes whatever it takes to get well. Your family might have to adjust, but rest assured they'll be overwhelmed with relief when you get better.
And finally, exercise, exercise, exercise. That's a direct quote. Even Darryl's mom (who also has Lyme) rides the bike he gave her indoors, in front of the telly. Do what you can to sweat out the toxins every day. Build muscle, which will help your immune system build strength. Darryl addresses this whole issue of exercise with compassion for those of us who suffer with crushing fatigue. He's been there too.
The really, really great news? Darryl's better!
Get your water bottle, jump on your stationary bike, hop onto your mini-trampoline and put on your headphones. Listen to Darryl's interview here.
Listen to the entire interview with Darryl for free!
Podcast - This is a long interview, so it may take awhile to load, please be patient.