Exploring chronic disease
22 Sep 2007
By 2003 she had physically hit rock bottom and was completely unable to maintain her farm. Now, thanks to Autoimmunity Research Foundation’s Marshall Protocol, she has the energy she had in college. Sue Andorn will now take your questions.
I started my 4th year on the Marshall Protocol in June 2007.
When I was a child I was quite healthy. I walked four miles to get to school and had perfect attendance. My first sign of illness occurred in college when I got a polynidal cyst on my tailbone. It burst internally before it could be removed. I now know that it was probably filled with bacteria that subsequently drained throughout my body. I graduated from college with a degree in microbiology and proceeded to work at Sterling Drug Company, where our team began doing research on a measles vaccine. Because we were working with germs, I had to get an Asian Flu vaccine. Within minutes of receiving the injection I went into anaphalactic shock. Six months later I got extremely ill with the flu despite the vaccine. Knowing what I know now, it was a vaccine contaminated with L-form bacteria. I never really recovered. That was the start of a downhill slide that lasted 50 years.
Soon after, I began doing research in the poultry department at Cornell University along with a team who were studying multiple sclerosis in chickens. In the years that followed, I developed symptoms of multiple sclerosis myself. I had a host of neurological symptoms, especially symptoms that interfered with my vision. When driving, I had to put my left hand on my temple in order to force my eyes to see straight ahead.
As the years wore on, I had various infections that doctors treated with beta-lactam antibiotics, the type of antibiotics I now know actually encourage the formation of L-form bacteria. I also started to get horrendous headaches. I was living with so much pain but had no choice except to push on. I guzzled at least 9-12 aspirin a day, 3 at a time, but got little relief. Several years later, I got bitten by a deer tick and developed Rocky Mountain Spotted Fever.
I began to have panic attacks. Many nights I ended up in the emergency room and often my husband had to carry me down the stairs and out of the house. It felt as if the world was spinning and riding in vehicles made me dizzy and sick. Then, about 20 years ago, I was living on my farm (where I still live) and felt something itching on my leg. I looked down and there was a 1.5 inch bullseye 12 inches above my ankle – I had been bitten by another tick. I couldn’t walk ten feet without cramping. I started to take 18 aspirin a day.
My doctor barely knew what Lyme disease was, let alone how to treat it. In fact, he wouldn’t even give me a test for Lyme and was skeptical when I reported my symptoms. Finally my husband called the Lyme Foundation. I just couldn’t take one more ignorant doctor. At the time their treatment for Lyme was penicillin and prednisone. When I started prednisone I felt horrible. I was so wired – it felt as if I had stuck my finger in an electrical socket. Thankfully, I stopped the prednisone. I continued the penicillin, oblivious to the fact that I was taking yet another antibiotic that encourages the formation of L-form bacteria.
During this time, my husband was forced to take a job in France. I had to travel back and forth to visit him overseas despite the fact that I was so ill. But most of the time I was on my own. My weight skyrocketed. I gained about 50-60 pounds overnight. Friends and family accused me of having no willpower. Although I ate only small amounts of healthy food I was told I was eating the wrong stuff. In order to appease everyone, I was given an exercise bike. Despite my symptoms I forced myself to pedal for ten miles every night, just to communicate the idea that I was trying my best to manage my weight.
The fatigue was horrible. It can’t even be described as fatigue, it was utter collapse. I told my husband, “If the house catches on fire and you don’t want me around, don’t get me”, because I couldn’t make it quickly out of the house myself. I started to have horrible problems breathing. I swore I had pneumonia but my doctor told me I was crazy, my chest X-rays were fine. One night I had a breathing attack. I fell on the floor completely unable to breathe. I lost complete consiousness and saw bright lights in front of my eyes. It was a near-death experience.
I also had terrible pain in my muscles. The muscles in my shoulders were rock hard with tension. The doctor sent me to physical therapy where the therapists tried to break up the muscle fibers by drilling short sticks of wood into the muscle. It was so painful. At this time I had been sent to an infectious disease doctor as my family doctor had no idea how to correctly treat Lyme Disease. This doctor started me on IVs of the antibiotic Rocephin. I administered the IVs everyday at my shop before I opened. One day, a new package of Rocephin arrived by overnight air. It was a different color than usual and I could tell it hadn’t been refrigerated. The drug company told me to take it anyway. It made me incredibly sick. I called my doctor and told him that I refused to take Rocephin anymore.
During all this time I continued to run my yarn business. I clung to it because working and interacting with other people at the shop was the only thing that made me feel somewhat normal. Plus, I needed the money. I started to suffer from dyslexia and that made working even harder. I would mix up the numbers in the 1000s column of my checks and they would bounce. I had to go to the bank and explain that I had a problem. I also had three children. With each pregnancy I became progressively sicker.
By this time my blood pressure was out of control – it was extremely high. I was given blood pressure medication. One night when I took the medication I began to hallucinate. It scared me so much that I stopped the blood pressure pills as well. I went to the Mayo Clinic seeking help. They diagnosed me with osteoarthritis and rheumatoid arthritis but had few treatments to suggest. I developed a terrible rash on the left side of my face. It felt as if my left ear was on fire. My eyesight got worse. I saw flashing fireworks in the corner of my left eye and I was unable to focus my vision correctly. The headaches got worse. Large crusty scabs and sores developed in the creases of my eyes. I started to have suicidal thoughts, not because I was clinically depressed, but because I just wanted the pain to end.
I had tremendous incontinence. When I told my doctor he laughed at me. Although I felt like I wanted to sleep all day, I had complete insomnia. I took so many sleep medications that I thought they might kill me instead of put me to sleep. Then, I was bitten by a mosquito and developed West Nile virus and Babesia. I almost died again. After that there were always huge black circles under my eyes.
I was lurking at a website called Lymenet. I knew I had Lyme disease even though my current doctor had still refused to get me tested for Lyme. The site had a list of doctors that treated Lyme. I chose Dr. Fein, a physician who lived about three hours away. My husband went with me to see Dr Fein. When she asked me about my symptoms I was so sick and brainwashed that I couldn’t even list them. But my husband just rattled them off and they fit the definition of Lyme disease exactly. I was finally given a diagnosis. The diagnosis was later confirmed by spinal tap PCR. Dr. Fein started me on 24 hour pumping antibiotics at the cost of $7,000 a week. After each round of high-dose antibiotics I just got worse.
I continued to read articles on Lymenet. One day, they featured an article about the Marshall Protocol written by Dr. Scott Taylor. Thanks to my background in microbiology I easily understood the treatment. I screamed “Oh my God! It’s a cure! It’s not just another Band-Aid!” I immediately realized that Benicar was the key to recovery. I mean, the science behind the MP is just damn common sense!
I presented the Marshall Protocol to Dr. Fein and she agreed to let me try it. However she was a bit skeptical about high dose Benicar. So she wrote me a script for only one Benicar a day, despite the fact patients must take four Benicar each day if the treatment is to work correctly. For some reason, my pharmacy let me fill all six refills for my Benicar prescription in one month. I decided to take three Benicar a day even though I knew I would run out soon.
By that point, I was very scared of medications because of the terrible reactions to drugs I’d had in the past. The first night I took a Benicar I was very nervous. I swallowed it and said “Here goes!” When I woke up the next morning I could not believe how I felt. I felt better. It was working! Finally I ended up writing Dr. Fein an email confessing I had taken more Benicar than prescribed. I said “Please don’t shoot me, but I’m taking four a day and I feel so much better!” She didn’t get mad. Instead she called the pharmacy and changed my prescription to four a day.
Well, I have my brain back! It feels so good to get my brain back. My short-term memory, which I had completely lost, has been restored. I think that at the moment my brain functions even better than it did when I graduated from college 50 years ago. I’m 71 years old, but I’m even considering going back to college or buying DVDs of college courses. Now I have a great craving for knowledge and may even take some courses in calculus, a subject that was my Waterloo in college.
My fatigue is virtually gone. I have landscaped the entire yard on my farm, something I haven’t been able to do for the last 30 years. When I work in the yard I dig holes, I clear brush, and I push the lawnmower in order to cut the grass. Last year I buried a 300-pound sheep all by myself. I carry 40 pound bags of salt, and can dump 50 pound bags of grain into a wheelbarrow. I’ve never, in my entire life, had this kind of strength!
And then there’s my eyesight. My eyesight is only getting stronger. For the last 50 years I have worn prescription lenses for farsightedness. I had a script change in May, and my prescription was not nearly as strong as it used to be. In fact now, just a few months later, the new prescription is too strong. My eye doctor can’t believe it. He’s so impressed that he asked me for written permission to be able to tell his other customers about my progress on the MP. I anticipate that I may not be wearing any lenses at all down the road. The MP is going to change the paradigms on aging. I am just getting younger everyday.
About four months ago my blood pressure was normal for the first time in 40 years. I just couldn’t believe it. My tests for Lyme and Bartonella (which had been positive before) are now negative.
The extra weight is completely gone and during the Marshall Protocol I made no changes to my diet. The extra fat just went away gradually as I healed. I used to crave sugar, but not anymore. The other day I bought a cream doughnut and it seemed tasteless. Also, my body temperature is back to normal.
My headaches are virtually gone. I still have a small headache here and there but I think it’s partially because my glasses are too strong! I still have occasional insomnia but it’s pretty much all cleared up. I have very little grey hair and the new hair that is growing in is black rather than grey. My fungal toenail has grown out.
I have no more panic attacks and my anxiety level is drastically down. My dyslexia is gone. You wouldn’t believe how fast I can add up the sales slips at work! I’m no longer dizzy. And there are a whole bunch of other smaller improvements. For example, the big toe on my right foot used to be bent like an L. Every time I bought new shoes they became distorted. Now the joint is completely straight and it’s no longer red or inflamed.
Dr. Fein is a witness to the fact that I am getting better every day. She admits that I am recovering and is thrilled with my progress. She has started several other patients on the Marshall Protocol.
The herxing was heavy at first, but was never harder to deal with than the symptoms I had before the MP. Once on the MP I had a mental edge – I knew I was on the right track, so I was going to feel the pain to work the gain. The immunopathology never got so bad that I couldn’t get to work. At least I don’t think I missed more than 2 days in 3 years+. I had suffered so much over the previous 20 years and had somehow managed to keep going. So once on the MP I said, “I’m going to make it work”, and I did. The immunopathology-related insomnia was also hard to deal with, especially when I had to work. But since I ran my own business I could pace myself, like the actor that says, “The show must go on.” During the first years on the MP I also had a lot of muscle spasms. Sometimes they were through the roof. But they have virtually gone away now. I did continue to take aspirin because of the pain, despite the fact that the MP does not recommend its use. I also took hot baths, which allowed me to sweat and feel less toxic. Several times I would come home and lay down for an hour before I would have dinner, but that was after I had walked the dog and drove for 1/2 hr to get home. In other words, the MP was a piece of cake in comparison to what I endured before.
Bactrim was the only antibiotic that I had to back down on. That packed a huge wallop. I read and still read every single post on the MP board so I am well aware of what symptoms others experience. By reading the progress reports of those who had started the MP before I did, I understood what types of symptoms to anticipate and how to manage them. So I plunged on ahead, although I never let my symptoms reach an intolerable level. My attitude was I was on a killing spree and ridding my body of the enemy. I have never taken an antibiotic vacation, but again, I had put up with so much before the MP that being on the treatment paled in comparison to what I was used to enduring. Likewise I justknew I was getting better and it was worth the pain. Having to help customers at the yarn shop took the focus off myself. Instead, I tried to put my energy out to help others. The distraction really helped. I also took a lot of hot baths. They allowed me to sweat and feel less toxic.
The hardest symptoms to manage were probably all the brain fog and the dyslexia. I refused to use a calculator to add up sales slips. I made a slow and concerted effort to do all the adding in my head. Most of my customers knew my plight and were very patient. It paid off. The brain fog lifted first, then the dyslexia, and finally my level of motivation increased tremendously. I am so ambitious at the moment.
The changes occurred gradually. They were little ones, like one fingernail becoming smooth instead of having vertical rips and ridges. I knew that 50 years of a downhill slide wasn’t going to change overnight, so even the littlest changes were very welcome. After the first six months I turned a small corner, then another corner about a year later. The second Marshall Protocol Conference in Los Angeles was held right at the time that marked my completion of 2 years on the MP. While at the conference I thought back over the previous years and really took note of how much better I felt. I said, “Right now I feel gold, but I’m going for platinum!” As Dr. Marshall says, the MP is a voyage of discovery. The immunopathology of the last week just reminds you that there is still work to be done. The IP doesn’t really faze me because I am alive and getting better. Stress just doesn’t exist anymore.
I would have to say nothing was a surprise, as I feel my body didn’t have a cell that wasn’t infected. I did have cardiac symptoms during the first years, but I was prepared for them. The board staff warned me in advance that my heart was most likely infected because I was so ill. But for at least a year now, the cardiac symptoms have completely gone away.
For a while I also developed shingles, which I’d never had before. But it was probably the herpes virus resurfacing since I’d had chickenpox as a child. The pain was horrendous but it finally went away.
I am at the highest dose of the most potent combination of antibiotics used by the MP. I have tried all the different antibiotic combinations twice and this is the third time I’m on the strongest antibiotic combo. I had a small increase in IP symptoms about 8 months ago because the level of 25-D in my body dropped to a very low level and my immune system really kicked in. At about that time my blood pressure became normal for the first in 40 years.
Patients on the MP wear special sunglasses made by the company Noir Medical. I didn’t have the Noir sunglasses for the first 3 months on the MP. Instead I was forced to use glasses with photo gray lenses until the Noirs arrived via mail. When I started the MP I was photosensitive. Luckily it was fall, so there wasn’t as much sun. I have never been a sun worshipper, so it was easy to avoid. I did not block the windows in my house as I have two-foot thick stone walls and a huge walnut tree that shades the house. I did keep the lights very low. At the yarn shop it was a little more difficult to avoid light because of the east windows and the fluorescent lights, but I wore my Noirs and was able to manage. When people asked why I was wearing glasses, it gave me a good opportunity to bring up the MP. Stores with fluorescent lights were a problem so I avoided them as much as possible. About 15 months into the MP I found I no longer needed to wear Noirs when I was on the computer or working in the shop. Instead, my photo gray glasses did the job. In order to block sunlight I religiously apply ketaconazole cream to my face and arms. Ketaconazole cream blocks the production of vitamin 1,25-D in the skin. Occasionally I forget to apply it when working in the yard in bright sun and I may have an occasional sun flare. I will probably stop using the ketaconazole cream when the tube runs out in about two months.
I still have a ways to go on the MP. But the majority of my symptoms are only in my lower body. I have problems with the hamstring on my right leg and I have a torn meniscus that I have decided to let heal on its own. Just last week I had strong immunopathology in my legs. It brought back memories of 15 years ago when I first started to have symptoms in that area. But I just got out a knee brace, wrapped the legs up with some ace bandages and proceeded with my day. As of tonight, the pain is almost completely gone. Without the MP, I truly believe I would be six feet under. Now I am going for at least 100, more like 120, and I plan to be very active in the years to come. I have the energy that I had at 35, but I still have a long way to go. I know there are still a LOT of enemy (bacteria) hiding, but they will be found and will succumb! I’m also intent on spreading word about the MP. The MP is the only game in town. When customers come into my shop I give them a free copy of Dr. Marshall’s “Science” DVD. I have also realized that I am in control. Ultimately, I am in charge of my own health and I can actively participate in the decisions that will allow me to recover.
Amy Proal graduated from Georgetown University in 2005 with a degree in biology. While at Georgetown, she wrote her senior thesis on Chronic Fatigue Syndrome and the Marshall Protocol.