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Commentary: Just say no to drugs
When I was first searching for medical treatment for my strange symptoms, the doctors I visited were unanimously directing me to neurologists to primarily address my gait and running issues. Even when I suggested that Lyme disease (LD) might be the culprit, I was chastised, demoralized and lectured about questioning medical professionals.
I, being a computer systems professional, was not in any position to challenge the medical staff. After all, I had spent a lifetime being indoctrinated that doctors have this supreme intellect and knowledge that can only be obtained from years of studying medical textbooks. So, after several visits and tests, their prognosis pointed to Multiple Sclerosis (MS).
Up until the past few decades, MS was believed to affect approximately two in a million people. Just my luck, I was diagnosed with the more rare version of MS, Progressive MS rather than Remitting-Relapsing MS, which affects far fewer MS patients.
Knowing little about MS, I accepted their prognosis and began MS treatment. At first it was Baclofen, a skeletal muscle relaxant which had no affect on me. Then it was Avonex, a weekly self-administering needle which was supposed to slow the progression of MS. Frighteningly, Avonex completely paralyzed me for several hours.
Months passed until some local friends who had LD, insisted that I see their Lyme Literate doctor (LLD). Sure enough, I tested positive for Lyme, Bartonella and Ehrlichiosis. The IV antibiotics this LLD put me on began clearing up most of my systems (e.g., numbness, dementia, memory problems, spasms, vision, etc,).
Even though many of my symptoms were reversing with the Lyme treatment, my walking worsened. Over the nine years of antibiotic treatment, I went from a spastic gait; to stumbling; to a cane; to a walker; to a wheelchair.
A follow up MRI ( three years following the first) showed no new plaque (white matter) on my brain which is generally indicative that one does not have MS. Still, my legs got worse. Could I possibly have both MS and LD?
Ampyra, a new miracle drug purportedly able to help MS patients walk, was just coming on the market. If I did have MS, this would certainly help. So I experimented and took some. Within an hour, my legs worsened and I fell three times trying to get up and down a few stairs.
So. Baclofen was ineffective, Avonex paralyzed me, and Ampyra worsened me. I’ve given up thinking that I might have MS or that drugs will help.
Other than this brief Ampyra test, I have been off all drugs and undertaking a year of Soviet-style Medicinal massages and customized immune building herbal teas. My expenses are a fraction of what traditional medicine costs and my neurological damage has clearly reversed itself. After nine years of deteriorating, I should be waking again by year’s end.
For me personally, I am keeping my fingers crossed (which I can finally do again) and saying no to all drugs. But, we are all different so please do what works for you.
Lyme Handbook 
Commentary: Just say no to drugs
When I was first searching for medical treatment for my strange symptoms, the doctors I visited were unanimously directing me to neurologists to primarily address my gait and running issues. Even when I suggested that Lyme disease (LD) might be the culprit, I was chastised, demoralized and lectured about questioning medical professionals.
I, being a computer systems professional, was not in any position to challenge the medical staff. After all, I had spent a lifetime being indoctrinated that doctors have this supreme intellect and knowledge that can only be obtained from years of studying medical textbooks. So, after several visits and tests, their prognosis pointed to Multiple Sclerosis (MS).
Up until the past few decades, MS was believed to affect approximately two in a million people. Just my luck, I was diagnosed with the more rare version of MS, Progressive MS rather than Remitting-Relapsing MS, which affects far fewer MS patients.
Knowing little about MS, I accepted their prognosis and began MS treatment. At first it was Baclofen, a skeletal muscle relaxant which had no affect on me. Then it was Avonex, a weekly self-administering needle which was supposed to slow the progression of MS. Frighteningly, Avonex completely paralyzed me for several hours.
Months passed until some local friends who had LD, insisted that I see their Lyme Literate doctor (LLD). Sure enough, I tested positive for Lyme, Bartonella and Ehrlichiosis. The IV antibiotics this LLD put me on began clearing up most of my systems (e.g., numbness, dementia, memory problems, spasms, vision, etc,).
Even though many of my symptoms were reversing with the Lyme treatment, my walking worsened. Over the nine years of antibiotic treatment, I went from a spastic gait; to stumbling; to a cane; to a walker; to a wheelchair.
A follow up MRI ( three years following the first) showed no new plaque (white matter) on my brain which is generally indicative that one does not have MS. Still, my legs got worse. Could I possibly have both MS and LD?
Ampyra, a new miracle drug purportedly able to help MS patients walk, was just coming on the market. If I did have MS, this would certainly help. So I experimented and took some. Within an hour, my legs worsened and I fell three times trying to get up and down a few stairs.
So. Baclofen was ineffective, Avonex paralyzed me, and Ampyra worsened me. I’ve given up thinking that I might have MS or that drugs will help.
Other than this brief Ampyra test, I have been off all drugs and undertaking a year of Soviet-style Medicinal massages and customized immune building herbal teas. My expenses are a fraction of what traditional medicine costs and my neurological damage has clearly reversed itself. After nine years of deteriorating, I should be waking again by year’s end.
For me personally, I am keeping my fingers crossed (which I can finally do again) and saying no to all drugs. But, we are all different so please do what works for you.
Rob
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~ by Rob on August 10, 2010.
Posted in Commentary, Lyme, MS, Video
Tags: Bartonella, Commentary, Lyme, Lyme Disease, MS, Multiple Sclerosis