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Interview with Ken L. – Post Treatment Lyme Disease Syndrome (PTLDS)

Posted By Amy Proal On March 31, 2008 @ 9:41 pm In interview (patient),marshall protocol | Comments Disabled

At the lowest point in his life, this Canadian native was so sick that he could do nothing more then lie in a dark room, thinking about the fact that his body seemed to be on fire. His symptoms of twitching, swollen muscles and raging emotions were out of control. However, after a series of antibiotic regimens that finally led him to Autoimmunity Research Foundation’s Marshall Protocol, he has recovered to the point where he feels like a kid in a candy store. Meet Ken L.

Can you describe the progression of your disease?

When I first started to suffer from symptoms of Post Treatment Lyme Disease Syndrome (PTLDS) I was living in South America. 2001 was the beginning of a gradual downhill slide. My feet started to become very sore, I became increasingly forgetful, and my balance was impaired. But it wasn’t until May 1st of that year that I was suddenly struck with incredibly severe symptoms. That day, when I went into the office, I felt terrible. I told my co-worker “Something is very wrong with me”, and he proceeded to take me to the hospital. My symptoms were terrifying . I had a crawling sensation that started in my hands and feet and crept up the back of my legs, until it finally reached my arms and the back of my head.

I saw an internist who thought I had Guillain-Barre Syndrome, an extremely debilitating disease that occurs when the nerves outside the brain become demyelinated. I was told I would have to spend three months on a respirator and that I would lose the ability to move my body at all for up to three months. Naturally I was terrified. The doctor told me that if I agreed to take large amounts of human immunoglobulin then I might be able to thwart development of the disease. Apparently this had curbed the onset of the illness for some of his patients in the past, although he had absolutely no idea why or how it worked.

So I was given $20,000 worth of IV immunoglobulin which, in the end, had absolutely no effect on my symptoms. I kept tingling and twitching. Later, to my utmost dismay, I learned that immunoglobulin is collected from the blood of thousands of people, and contains their antibodies. In hindsight, this seems to indicate that Guillain-Barre is an infection. At any rate, it made no difference in my treatment and I now realize that the immunoglobulin was probably contaminated with a great deal of L-form bacteria, bacteria that each of those thousands of people most likely harbored.

Although it had nothing to do with the immunoglobulin treatment, five days later my symptoms became slightly more subdued and I was allowed to leave the hospital. I flew back to Canada where I saw a series of doctors. The second doctor I saw told me I did not have Guillain-Barre, and was unable to explain my symptoms, yet I was still incredibly sick. I was so tired I could hardly move. I had developed fibromyalgia-like pain and joint pain. I also experienced massive body tremors. My short-term memory rapidly deteriorated and my emotions started to flare out of control. It was clear that my nervous system had become dysregulated and that my ability to process sensory input was all messed up. My gait was unsteady and I couldn’t walk straight.

My wife was very shocked at my condition and didn’t know what to make of it. The husband she once knew now seemed insane and was essentially bound to a wheelchair. But despite the physical torture that I was enduring, I had no visible symptoms. It didn’t look as if there was anything wrong with me. I entered the hardest period of my life. I discovered that I could no longer tolerate bright lights or loud noise. Consequently, all I could do was lie alone, in the dark, inside a quiet room. It felt as if my entire body was on fire. I was extremely lonely and extremely scared. One time my calves spasmed so much (it looked as if worms were crawling under my skin) that my wife was able to recognize the symptom and gasped in horror. Yet she still failed for some time to understand the severity of my symptoms.

On some occasions I tried to force myself to accompany my wife on short excursions. One day we were at a store. I was leaning on a shopping cart for support when suddenly it felt as if somebody had kicked the back of my legs out. My knees buckled. I told my wife, “I need to get out of here…fast.”

I went to see yet another doctor and was told I might have MS. His staff collected vial after vial of blood and spinal fluid until they literally ran out of tests to perform. Meanwhile, the crawling sensation, the twitching, the clonus (jerking back and forth), the pain, and my short term memory loss were worse than ever. My emotions were completely out of control. What I said no longer made any sense and I literally felt insane.

Eventually I was told that I didn’t have MS. Nevertheless, I had already started investigating MS on the Internet and had gone to an MS Society meeting. Despite the fact that I was not officially diagnosed with MS, the people at the meeting had pretty much the same symptoms as I. I was horrified by the prognosis given to people with MS. We were told that for the rest of my life, I would have possible good days, bad days, and inevitably suffer from relapse after relapse.

I attended a lecture on MS and was appalled to find that the lady sitting next to me acted as if she had lost her mind, like she had cognitively flown off the radar. I tried to tell myself that I hadn’t reached such a state, but when I left the meeting I realized that I couldn’t remember where I was. I couldn’t remember what city I was in. I couldn’t remember if I lived in the city or not. Where was my home? Did I have a car? If so, where was it?

When I finally made it home, I began to look for information on the Internet with increased fervor. I was sure I had only weeks to live. Using the computer required all the energy I could muster. I staggered over to the machine and my hands would shake violently as I tried to use the mouse. Yet it was during those periods on the computer that I learned more about the disease that is often dubbed the “great imitator” – Post Treatment Lyme Disease Syndrome (PTLDS). It’s called the “great imitator” because so many symptoms of PTLDS resemble those of other inflammatory diseases such as MS. Now that I understand the science behind the Marshall Protocol, the fact that PTLDS, MS, and many other inflammatory diseases have overlapping symptoms comes as no surprise. I understand that these diseases are all bacterial illnesses and that people with different diagnoses often share many of the same bacterial species. So I’m sure I did harbor many of the bacterial species that cause MS.

But as I read more information on PTLDS, I remembered with increasing clarity an event that had occurred nine years before, during a hike through the West Coast Trail on Vancouver Island. After the hiking trip, I had noticed an itchy rash on my stomach. I proceeded to pull a black “poppyseed” out of my belly button – what I now realize was the remnants of a tick. At the time I had dismissed the rash and moved on, yet two weeks later my knees had become very sore. It was also the beginning of symptoms of depression that would haunt me for the next nine years.

In the months that followed, the soreness in my knees got worse and my emotions became more unstable. My knee pain was so bad that I lost the ability to jog. Yet I tried to ignore the symptoms and push on with life as normally as possible. My girlfriend at the time worked for a supplement manufacturer and was selling one supplement that contained the herb sarsaparilla. I realize now that it’s an anti-Lyme agent originally used to treat syphilis (another type of spirochete) and when I took it, it might actually have killed a small number of the bacteria making me ill. That’s because after taking the supplement, I woke up one morning feeling as if I’d been hit by a truck. It could have been my first immunopathological or bacterial die-off reaction. In retrospect, I realize that feeling temporarily worse after taking the supplement might have actually been a sign of bacterial death. This is one of the invaluable lessons I have learned by understand the science behind the Marshall Protocol. Now I understand that “If you aint herxing, you ain’t healing.” In other words, experiencing immunopathology is a sign of healing.

Returning to the time nine years after the tick bite – the time when I was starting to learn more about PTLDS over the Internet – I realized that I once again had the same soreness in my knees and even the stomach rash that had started nine years earlier, after the tick bite. It assured me that the tick bite and my current symptoms were connected. The Canadian government claims that only about 20 cases of Lyme disease occur yearly in Canada and that ticks that carry the borrelia spirochete or L-form bacteria are few and far between. Yet my wife hiked the West Coast Trail almost one year after I did and also proceeded to develop PTLDS (she may also have picked up some of the L-form bacteria that I harbored after I got sick). Then, my son, his friend, another friend, his niece, and about half the people I know who hiked that Trail have since developed PTLDS. So I’d say the Canadian government’s claims about the number of insects that carry L-form bacteria here in Canada is incredibly off.

Eventually I diagnosed myself with PTLDS disease, and in the process saved my life as the diagnosis was what eventually led me to find the MP.

I went to see a neurologist who refused to accept that I might have PTLDS because I didn’t test positive for the bacterium Borrelia. I tried to tell him that the tests were no good because I had all the symptoms of the disease but he wouldn’t listen. That experience was the beginning of the end of my relationship with the mainstream medical community. My next doctor again refused to treat me for PTLDS because of my negative test results but I was too weak and confused to fight back.

I soon learned that the average person with PTLDS goes to 21 doctors before getting treated. If that would have happened to me, I’d almost certainly have died. I was lucky enough that the 9th doctor I saw agreed to put me on high-dose antibiotics. I took a 12 hour road trip to see him in the USA. When I reached the hotel, my body was vibrating so badly from the exertion of the trip that my wife, who still wasn’t convinced that I was truly ill, became alarmed again.

I had had to stop working and was on one year disability. We decided to move to the West where the weather was warmer and the taxes not as high. During that time, I started to develop symptoms of CFS as well. I slept for over 20 hours a day. It took us six months to move because I would literally pack one box of books, carry it up the stairs and into the garage, then need to go back to sleep for 24 hours.

Under the care of one of the few treating doctors in Canada, I did six more years of high-dose antibiotics. I did experience immunopathology (the herxheimer reaction) in response to taking many of them, but my symptoms never came close to resolving. Sometimes I would seem to reach a plateau, but then I would inevitably relapse. It seemed like the antibiotics were helping me somewhat, but taking them at high doses was like taking three steps forward and two steps backwards. When I had IV rocephin for three months, I started to feel like I was making no progress at all – it was three steps forward, three steps backwards. I think this pattern might have gone on forever if I hadn’t found the Marshall Protocol. I learned from the MP site that beta-lactams will drive spirochetes into the stealthy L-form. This accounted for much of my backsliding.

How did you find the Marshall Protocol?

I started to get involved in the Lyme community and became friends with some other local Lymies. I met many of them through the Canadian Lyme Disease Foundation (canlyme) which is a very helpful group. Sometimes we would go out to dinner and talk. During one dinner, I began to talk to a man who was on the Marshall Protocol. He was quite happy with his recovery thus far. After that point, every time we would see each other he would urge me to try the MP.

For a while I kept the MP in the back of my mind, but after realizing that my doctor was going to retire, I knew I had to plan for the future. I looked into the MP in greater detail and became very interested in what I learned. I decided it was definitely worth a try and found another doctor in my area who was already working with MP patients and was more than willing to put me – and my wife – on the treatment.

I should also mention that a year before starting the MP I suffered from angina that led to a pre-heart attack. Six months later I had open-heart surgery and triple bypass surgery. I was only 52. Now that Dr. Marshall’s research has made it clear that cardiovascular disease is also an inflammatory disease that results from infection with L-form and biofilm bacteria, I’m not surprised that pathogens had also spread and infected my cardiovascular system. My blood pressure on the MP has dropped by over 30 points! I take no other medications.

A year before starting the MP, I inadvertently went on it in a modified form. I was given AltACE for my blood pressure. AltACE suppresses Angiotensin Converting Enzyme, which is the precursor to angiotensin. Since the MP’s Benicar is an angitotensin receptor blocker, they are both involved in the angiotensin creation process. By happy coincidence I was also on a high dosage of one of the antibiotics used in the MP. My herx was spectacular and had me almost bedridden for four days. When I finally learned about the action of Benicar and recalled this incident, I needed little convincing that the MP was the way to go. I was searching for a new GP at this time and, when I mentioned that I had become very “sick” on AltACE and would no longer take it, he dismissed me immediately saying he would not treat a patient who would not take his meds.

Interestingly, two of the high-dose antibiotics that I had responded ro most positively in the previous six years were both held in high regard by the MP. This assured me that I would also respond well to the MP. I started the treatment at a pretty low point – I was still dealing with heart symptoms, PTLDS symptoms, and was very tired. My joint and fibro symptoms were also flaring quite a bit.

After starting Benicar and the MP antibiotics, I didn’t notice much of an immunopathological reaction for the first two months. But I stuck with the treatment, and during month three, it seemed like the doors opened and a truck came though to flatten me. My immunopathology was strong and constant. As symptoms returned as a result of bacterial death, I once again became mentally unstable and quite anxiety-ridden. Because my immunopathology elevated my symptoms of anxiety, I had regular crises of faith about the MP – times when I would get nervous and doubt that the treatment was working. I would wonder, “Is this immunopathology, or am I just getting sicker?” In the end, I always realized I was on the right track, but the mental immunopathology did make accepting that reality difficult at times.

The heavy immunopathology continued for four months, but then one day I woke to find that about 80% of my symptoms had dissipated. The next day about 90% of my symptoms were gone. It was the most beautiful, wonderful experience of all time. From that point on, I have felt incredibly healthy and have not relapsed or gone backwards in any major way. My level of pain is minimal. I still get some minor immunopathology in my joints, teeth, and some fibro tender spots, but I would say I have 90+% of my life back. It’s just unbelievable.

In August, during the time when I first I started to feel so much better, I read my first book just for pleasure in years. It was the Ascent of Man. I was able to remember everything in the book, toy with the topics in my mind, even dream about the book and remember minor details. When I finished the book, I cried. I never ever thought that my mind would feel and function this way again. All I can say is that my mind is BACK! My cognitive improvement is absolutely fantastic. It has almost completely allowed me to return to a different quality of life. My memory and cognitive function are almost back to 100%. This is such a change from the times when I would “wake up” in the middle of a sentence, wondering who was talking!

These days I only sleep about 8 hours a day with an occasional nap in the afternoon – the severe exhaustion is completely gone. I still have some fasciculations on my calves but it is quite rare. I am no longer sensitive to light or sound – I can turn up the radio on my truck and enjoy the music. In fact, my hearing itself has improved and my tinnitus is about three-quarters resolved.

My wife, who developed PTLDS a year after me, is also on the MP and experiencing many of the same improvements I am. We are also very happy with her progress.

In terms of your recovery, how do you feel about the high dose antibiotics you took for six years versus the Marshall Protocol?

I feel that the high-dose antibiotics did cause an immunopathological reaction at many points, yet I doubt they were consistently targeting any of my L-form bacteria or other stealth bacteria that are able to change form. I would never have fully recovered if I hadn’t used the MP to target and kill these forms of bacteria which were definitely at the heart of my illness and running rampant while I was taking the high-dose antibiotics. Now that I understand the MP, the high-dose antibiotic approach also seems extremely unscientific. For example, the use of beta-lactam antibiotics seems quite obviously wrong, yet IV ceftriaxone (a beta-lactam antibiotic) is considered to be the Holy Grail of high-doise treatment.

The high-dose regimen seems to basically involve throwing antibiotics at a person and hoping they might have a positive effect – just hit or miss. In contrast, the science that forms the backbone of the MP is spot-on in my experience. Marshall’s molecular modeling research confirms exactly how each of the pulsed, low-dose antibiotics used by the Treatment binds and blocks certain bacterial ribosomes. There is no question in my mind that the antibiotics are working. I also believe that the the MP antibiotic regimen is able to target L-form and biofilm bacteria in a way that high-dose antibiotics cannot.

Since I did experience immunopathology on the high-dose antibiotics, I think they did help me lower my bacterial load, but it was only by switching to the MP that I was able to consistently and thoroughly clean out the tremendous amount of L-form bacteria I harbored. All in all, my progress was very unsteady on the high-dose antibiotics and if I had to do everything again, I would definitely start the MP from the get-go.

What advice do you have for patients starting the MP?

Be patient during your immunopathology (herxes). Sometimes you may doubt the fact that your symptoms are the result of immunopathology, but as someone who battled those same doubts and has now largely recovered, I assure you that once you become symptomatic on the MP, your symptoms are almost certainly the result of your body killing bacteria. Have faith and ride through your herxes, but stay in touch with your doctor. It’s sad, because some people drop out at the start of the MP because they can’t get their minds around the idea that feeling bad after starting the treatment is not a sign that their disease is progressing but a sign that they are killing bacteria as expected. Sometimes people feel very bad after starting the MP but, since the rise in symptoms is due to immunopathology, it’s actually a sign that the treatment is working TOO well (too many bacteria are being killed) rather than not working.

What lies ahead?

Now that I’m getting my life back, I feel like a kid in a candy store. I’ve just become a Grandpa and I feel confident that I will live to see my grandchildren graduate from high school and college – something I would never have dreamed possible before the MP. The lost opportunities in my career and the high-dose antibiotic therapy that I did for six years has cost me well over $100,000, so I’m ramping up my career again in order to become more financially stable. But I’m basically a life hog – I have the freedom to enjoy the rest of my life. I cry at sunsets, I’m gentler with people, and I’m also an activist. I want to do everything in my power to promote the Marshall Protocol and to help doctors understand the treatment and recommend it to their patients.

My son calls me the “Lyme Crusader.” I’ll literally stand in line at the grocery store and ask people if they know of anyone with inflammatory disease. Then I’ll hand them a flyer with information about the MP. The treatment has worked so well for me that I can’t just stand around and watch other people with chronic disease suffer when I know the MP can give them their lives back.

I am eternally grateful for Dr. Marshall and the others who have made such a difference in defeating these diseases.

Interested in doing the Marshall Protocol yourself? Visit curemyth1.org and your questions will be answered free of charge by experienced patient advocates that volunteer for the non-profit organization that runs the treatment. (Th1 is a name currently given to diseases caused by L-form bacteria, hence the name cure my Th1)


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URL to article: http://bacteriality.com/2008/03/31/interview19/