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The Truth Is Revealed
By Jim Foris
My story starts out in the early 80's. My father had just retired at the age of 65. He was a physically very healthy individual for his age and I would say he spent 50% of his entire life in the woods hunting, fishing, trapping and picking wild berries in northern Wisconsin.
Shortly after his retirement, he suffered a severe heart attack. At least, that's what the doctors said. From then on, there were visits to the emergency room and hospital stays that were thought to be more heart attacks. At one point, his physician said that, by looking at his EKG, he could tell that he had fourteen mini heart attacks in the last couple of months. Not knowing much about medicine, I accepted this, but questioned the validity in my own mind.
As time progressed, things turned pretty bizarre in my estimation. He encountered extreme headaches, abdominal pain, dizziness, blackouts, stiff neck, urinary problems, vision problems and memory loss. Every time he went to the doctor for these strange new symptoms, it was always a different diagnosis. I couldn't understand how anybody could have so many different things wrong with them all at the same time. Then, after a couple of months, they would go away and he would get entirely new ones. At one point, I personally took him to a specialist in Minneapolis because the local specialists said he needed a heart valve replacement.
Can you imagine my surprise when they told me his heart was in excellent condition?
Early on the memory loss was pretty mild, but then the dementia really set in and continued to progress with time. It got to the point where my mother couldn't handle him anymore and we had to make a decision. She was getting where she couldn't take the stress and she opted to give me power of attorney over him. Reluctantly, we decided to put him in the local nursing home.
In the early 90's, my brother and I came down with some mysterious illness. After seeing fifty doctors, including six neurologists, he was diagnosed with multiple sclerosis.
I also saw many doctors, but soon realized they were missing something entirely. If I went to a specialist, they would only focus on the symptoms of their specialty and ignore the rest. It seemed that no one had the ability to look at the entire scope of symptoms and come up with a diagnosis. The straw that broke the camel's back was when I was told to see a psychiatrist.
As time went on, my father's, brother's and my condition all worsened rapidly, and I knew that seeing another doctor was a waste of time. I decided to gather my own information and try to come up with a diagnosis. First I tried medical books from libraries, but most were outdated and hard to understand.
I was looking for a symptom checklist similar to an automobile troubleshooting repair manual. We had also just gotten hooked up to the Internet, and I decided that might be of some help. I started scanning various diseases and was overwhelmed by such a monumental task. Nothing I looked at seemed to match the description of my symptoms.
While all this was happening, my brother faxed me a newspaper clipping about a woman by the name of Linda Hanner, who was finally diagnosed with Lyme disease after years of struggling with the wrong diagnosis. He thought that this was something we should look in to. I immediately got on the Internet and did a search for Lyme disease. What caught my eye was an article entitled Managing Lyme Disease, by Joseph J. Burrascano, Jr., M.D. When I got to the diagnostic section, I realized that this was it! The symptoms that I was suffering from were due to late stage Lyme disease.
Now came the hard part - where to go for treatment. What doctor in Wisconsin understands and is willing to treat this terrible disease? My prayers were answered on Christmas Day, when my brother called to give me the name of a man in Duluth, Minnesota whom he had found on the Internet. He said that this man knew a lot about Lyme disease and suggested I give him a call.
I called the day after Christmas and I spoke with Tom Grier. Tom is the support group leader for the Duluth/Superior Lyme Disease Support Group. He asked how he could help. I said, "I think that I have Lyme disease and I can 't get any doctor to believe me." Tom laughed, and I immediately got upset! I asked, "What in the hell's so funny?" He explained that he'd heard that same story a thousand times before. After about ten questions, Tom said that he thought I was in the late stages of Lyme disease.
Tom was the first positive person that I had talked to in almost six years! He said that very few doctors in the country know about Lyme disease and are willing to treat it. He gave me the numbers of two Lyme experts in the Minnesota-Wisconsin area. I called the one in Wisconsin. I spoke with Dr. David Papendick for about fifteen minutes and he basically reaffirmed what Tom had said. I just couldn't understand how these two people could tell me over the phone what countless other physicians could not tell me despite all the tests and examinations they had performed.
When I saw Dr. Papendick, he did a two-hour physical examination and started me on an antibiotic program. He also took a family history and told me he felt that I wasn't the only one in our family with Lyme disease. He said that Lyme mimics so many other illnesses, such as MS and Alzheimers, and that he thought my brother and father were also suffering from Lyme. At first I thought he was way off base, but as time went on, I realized he was absolutely right.
I also got involved with the Lyme disease support group in Duluth and Tom enlightened me about the similarities between Lyme disease and other illnesses. He said that he felt there was a definite connection between MS, Alzheimers, and Lyme disease. Tom was diagnosed with MS, which turned out to be Lyme disease.
With all this information in hand, I tried to convince my brother to call Dr. Papendick to talk about his diagnosis of MS. He refused to call because the neurologists had told him it was MS and he would have to live with it. Why is it that you can talk to someone about an illness until you're blue in the face, but when they talk to the doctor, he'll totally undo whatever you said within two minutes?
After a month of badgering, he did talk to Dr. Papendick, who reaffirmed that he was also suffering from Lyme disease and not MS. Working with my brothers' primary care doctor, he started him on an antibiotic program similar to mine. It took some time for the antibiotics to work for me, but after six months I felt that the drugs were working. I noticed that my brother's health was improving also, but he wasn't totally convinced that he had Lyme. That changed when I convinced him to have a LUAT at IgeneX. It came back positive.
My next step was to try to convince my fathers' doctor that possibly my dad was also suffering with late Lyme disease. Keep in mind that I had just signed up two months prior with a new primary care physician at the same clinic my father went to. I only saw my new physician one time, but he tried changing the diagnosis from Lyme disease to something else.
My new physician told me he would get back to me on numerous occasions, but never did. I finally found out why he was stonewalling when I spoke with my dads' doctor on the phone. I asked my him about the possibility of dad having Lyme disease. He wanted to know where I came up with that conclusion.
I told him that my brother and I were recently diagnosed with Lyme and our symptoms were very much similar to Dad's. That's when the bomb went off and this guy went totally berserk. He said that not only did my father not have Lyme disease, but neither did I! I was shocked by his statement! He wasn't my doctor, so how could he possibly know about my condition? This is when I realized that these doctors get together and decide a patient's fate and why my physician wasn't ever going to get back to me.
At this point, my father had been sick for fifteen years and had spent hundreds of thousands of dollars on tests, hospital stays and procedures, but his doctor wouldn't even test him for Lyme disease. I thought about somehow pressuring them into testing dad for Lyme, but I realized that if he was infected, he probably wouldn't test positive because he had been sick for so long. And, if I did get them to do it, I thought they might interfere with the testing to make sure it would absolutely turn out negative.
For me, questioning my dads' doctor about Lyme disease was like digging my own grave. They refused to give me referrals to Dr. Papendick that I needed because of my insurance, and they tried to get my insurance denied for the treatment of Lyme disease.
With things like this going on, I realized that dad would never get tested for Lyme disease and the more I pushed, the dirtier it would get - especially for me. I also thought that there was a very strong possibility that dad did have Lyme disease. I had to know either way. Tom suggested that I look into the possibility of having an autopsy done. He said there were two pathologists in the U.S. that specialized in finding Borrelia burgdorferi spirochetes.
I decided to look into this possibility and got in touch with a doctor named Allan MacDonald. After hearing what my brother and I had gone through, he agreed to do an autopsy for the detection of Borrelia burgdorferi in my father. There was only one drawback - the patient had to be deceased for removal of the brain. I also contacted the local pathologist, who agreed to do the brain removal when the time came.
It was almost a year later when we got the call that dad wouldn't make it through the night. The next morning, I called the local pathologist as well as the funeral director to make arrangements for the work to be done. The funeral director would take care of the cosmetics after the brain removal, because there would be open casket. Outside of my wife and brother, no one was to know what I was doing - not even my mother. Keep in mind that I had power of attorney over my father and I didn't want my dad's doctor or anyone else interfering with the process.
That same day, dad's brain was shipped out to Dr. MacDonald for a histopathogical analysis for the detection of Borrelia burgdorferi and related Borrelia species. The results came back four months later and read, "Positive results, spirochetes found within cortical neurons and in extracellular sites in gray matter regions." I was stunned! Dad did indeed have late stage Lyme disease that had lead to his dementia. Dr. MacDonald told me what was most interesting was that he had found a neuron with a spirochete half in and half out. At this time, most researchers were saying that Borrelia burgdorferi was not intracellular. This proved that the Lyme spirochete had the ability to penetrate cells.
For months, I pondered what to do with the information. I thought about presenting it to my dad's doctor and clinic. I realized they were "Lyme unfriendly", but this information might open up there eyes and get them to look at Lyme disease more seriously. However, that was just a pipe dream. About a year later, I got the chance to present my information. I was sent by my employer to a neurologist at the clinic in question because of my late stage Lyme. My wife came along as my patient advocate to fill in anything important that I might miss. The doctor reviewed my clinical history and I showed him my father's autopsy report as an example. He looked at the report, got rather excited and said the report showed that my father had syphilis. He also said that my brother and his wife, my wife, my mother and I were all infected with syphilis! My wife and I looked at one another in total amazement. He had come up with this brilliant diagnosis on six people in thirty minutes.
I asked where on the report that it said my father had syphilis and he pointed to the word "spirochete". I pointed out that the autopsy report said, "For the detection of Borrelia burgdorferi and related borrelia species", and not for the detection of Treponema pallidumn. At this point, I realized that he wasn't going to believe me, so I told him to speak with Dr. MacDonald. I called Dr. MacDonald later, and asked whether this fruitcake neurologist ever got in touch with him. He said that no one had spoken with him about it.
Even now, the clinic in question still won't acknowledge that my father had Lyme disease . I'm totally blackballed from local clinics for the treatment of Lyme, but I think in time this is going to come back and haunt them. I'm grateful for people like Tom Grier, Dr. David Papendick and Dr. Allan MacDonald for being there for us to help unravel this mystery. These are the pioneers that revealed the real truth.
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