Exploring chronic disease
17 Feb 2008
In 2000, this former RN was a “chronic mess” – so ill that her life was an endless series of painful and debilitating relapses. Today, after three and a half years on Autoimmunity Research Foundation’s Marshall Protocol she’s bid goodbye to most of her symptoms and is out and about again – taking water aerobics classes and volunteering at the local nature preserve. Meet Melinda Stiles.
I was exposed to L-form bacteria at an early age. During the 1970s, I was a practicing Registered Nurse in Connecticut, first at Yale University, then at Middletown Memorial. At the time, a number of young boys were admitted to our hospital with strange muscular, arthritic complaints, swollen joints, and fever of unknown origin. After being given high doses of antibiotics, one boy even developed a heart block. I was in the ICCU and assisted with the temporary pacemaker before he was transferred to Yale Medical for diagnosis. We were following the prognosis of these young men with interest at the time. Most of the cases were originating around the town of Old Lyme, Connecticut. Later, scientists at Yale would group the symptoms these boys presented under the label of “Lyme disease” – inspired, of course, by the name of the town in which the boys first became sick.
Today, based on biomedical researcher Trevor Marshall’s work, we understand that these boys, who were working in close contact, were passing around a tremendous amount of cell wall deficient pathogens known as L-form bacteria. The fact that L-form bacteria interfere with immune function made it easy for them to acquire the bacterial species Borellia as a co-infection. These boys almost certainly passed some of their L-form bacteria to me.
Before that time, during the year after graduating from Florida State nursing school, I contracted hepatitis B after being exposed by an incident in Beth Israel hospital in Boston. This was a severe case and prevented me from working for one year. It also seemed to bring on problems with my blood sugar regulation, as I suffered from hypoglycemia. It also increased my symptoms of Reynaud’s syndrome where my fingers would get numb and blanched when cold or stressed.
Starting during childhood, I also had bouts of IBS when under stress. This escalated after the bout of hepatitis and I was hospitalized twice in Yale New Haven during the 70s, and was told my entire GI tract was inflamed. At 30 years old, having worked in the ICCU for 5 years, I left the high-stress life. I moved back to Florida where I married and began spending much time in the tropical sun living on a sailboat. I had my daughter in 1979, delivered by C-section. In 1985 we moved to Spain, although I would return to the United States at regular intervals.
While in Spain, I contracted Paratyphoid B, a typhoid-like illness caused by a strain of Salmonella. During travels through Morocco and other countries, I suffered from a variety of other infections. My two dogs even had a parasitic disease called Leishmaniasis, which I treated with a weekly injection. After being exposed to so many germs, I was certainly a prime candidate for Dr. Marshall’s model of chronic disease in which people accumulate a “toxigenic pea soup” of pathogens, all of which contribute to chronic symptoms down the road.
Then, in the mid 90s, I was bitten by a tick while vacationing at the Jersey Shore. I had one week of flu-like symptoms that cleared, but I was never totally symptom-free from that time forward. Slowly I started to have back problems, muscle spasms, and bouts of malaise that would cycle off and on. This did not stop me from riding my horse and even trying to run in a Club. But I was called the “snail” because I never had enough stamina to keep up with the pack. In 1999 we had a very virulent attack of ticks and fleas on our animals. None of the normal products seemed to kill them. It was like a plague and I am sorry to say that I handled many of the ticks and fleas because I was constantly picking them off the animals without gloves. I remember entering the dog kennel one day only to find that my legs were black with the fleas. I was literally pouring buckets of chemicals on them at that point. Later my dog died from an array of symptoms, all surely caused by L-form bacteria.
Shortly thereafter, I became very ill with abdominal cramping, nausea, and a low-grade fever, malaise, profound weakness, headache, photosensitivity, congested eyes, muscular stiffness, and pain similar to that of fibromyalgia. I began to lose cognitive function and started to stutter. I became irritable and had mood swings and terrible insomnia. The worst was extreme back pain. The Spanish doctors did a number of tests and could not find out the cause, as nothing was abnormal in my blood work. An X-ray showed that the discs in my back had become swollen, and I was diagnosed as having radiculitis, this being inflammation of the nerve roots. I’ve had a baby, and this pain was worse than the pain I experienced during childbirth. I was unable to sit or stand and no medication seemed to help.
At the very same time my nephew and my cousin back in NJ were having similar symptoms and were diagnosed as having Lyme Disease. So the Spanish doctor did an Eliza score that was elevated and started me on 100 mg of the antibiotic doxycycline 4 times a day. The symptoms immediately began to subside, and I was treated for 6 weeks.
I improved only to begin a phase where I started to cycle in and out of rounds and rounds of feeling fairly OK followed by periods of feeling terrible and taking more doxycycline. I also began to develop strange muscle spasms. It felt as if there was a live animal inside me, moving the muscles inside my body. The feeling was similar to that of pregnancy contractions in the sense that they really shook me up but weren’t painful. I started to experience tics and twitching in my fingers and toes. I developed a left sided earache and a painful cheek. I started to do research about Lyme on the internet. I wanted to avoid IV antibiotics at all costs because I remembered how the boy from Old Lyme, Connecticut had developed a heart block after being given high-dose antibiotics, which I now know was a severe reaction.
By 2000 I was a chronic mess. I started to have what felt like panic attacks in my chest – as if all the energy was leaving my heart area. I was seeing a therapist for the emotional instability. Every time my symptoms returned in full force, I could feel my muscle strength disappearing at an ever-greater rate. I finally returned to the States determined to find help. I also had to return because I was so debilitated that I needed my family to help me cope. I was scared to death.
Back in the US in 2001, I continued to take doxycyline, continued to herx, and continued to deteriorate. After finishing one nine-month course of the antibiotic, my perception was so skewed that I was convinced I had multiple sclerosis. The muscles in my legs were so heavy that it seemed as if I was wearing cement boots. I didn’t even have the strength to roll over in bed. During this time, and even during the year before, I was unable to tolerate going to the grocery store. The trip to the back of the store to get meat was a nightmare. I really thought I was nuts, as every time I would get dizzy, nauseous and faint.
As I continued to get sicker and sicker, I contacted 15 different specialists, each of whom refused to see me or take me on as a patient. After getting the door slammed in my face I was desperate, but today I think the fact that I never ended up seeing a “specialist” is one of the best things that’s ever happened to me. Instead of seeing a specialist, I eventually ended up becoming the patient of a general practitioner in my area. At that point I started taking alternative treatments – colloidal silver and flaxseed oil extract (which is high in vitamin D). Not surprisingly, several months later, I had a severe relapse. I was out in the sun trying to do a small amount of gardening when I just collapsed. After that point, I began to suffer from palsy-like shaking of my left arm and dark purple staining of the skin on the back of my hand. I had been doing lots of searching on the internet looking for help from Lyme. It seemed that the people who had done strong IV drugs were just as bad off as those who had taken oral antibiotics.
Finally, one of my Google searches led me to Sarcoinfo.com – the precursor website to the Marshall Protocol study site. The treatment made sense and the science seemed solid. I asked my doctor if I could start the Marshall Protocol medications and he said “NO” but he would be willing to follow me with routine blood tests under my insurance. I persevered and finally found another elderly open-minded alternative type doctor who agreed to let me try the MP. He had been using minocycline on his rheumatoid arthritis patients with some success. I began the treatment in August of 2004.
I was also driven to pursue the MP because some of its major tenets resonated with the theories of a Japanese doctor I had worked with and respected while in Spain. He had explained to me that what we call the symptoms of an illness – a runny nose, diarrhea, coughing – are actually just the body’s response to getting rid of byproducts and toxins, which in most cases are created by an infectious agent. The body will stay healthy if the immune system is in balance. This helped me understand that once on the MP a rise in symptoms was a good sign, an indication that my body was killing the bacteria, making me feel “worse but better” by getting rid of the debris they left behind.
I started to feel better as soon as I started taking Benicar. I experienced strong immunopathology (the immune system’s response to bacterial death) at points but the symptoms never reached the level of the worst symptoms I had experienced before starting the MP. In fact, immunopathology was always manageable and I was able to continue to have a life while doing the treatment. Sometimes immunopathology occurred in tissues of the body that I hadn’t even realized were infected before starting the MP. For example, a strange immunopathological reaction developed where I would wake up in the middle of the night, cough, and choke. Obviously I had bacteria in my throat and sinuses that I had not realized were there pre-MP. As expected, the reaction gradually went away as the bacteria were killed.
The old irritable bowel syndrome and colitis symptoms came back and were quite intense, with bouts of diarrhea. In fact, different parts of my body reacted with more intense symptoms followed by relief of symptoms. Usually worse before better. Other symptoms that flared but then went away were a burning feeling in my tongue and also an increase in discomfort in my jawbone around my teeth.
At times the immunopathology made me feel weak and fragile, and during those periods sometimes I did wonder, “Will I ever get over this?” Worse than dealing with the pain was the fact that when I felt weak, I hated to view myself as an old, chronically ill lady. But as I killed enough of the bacteria causing my symptoms I got my drive back. I turned a corner and now those images of weakness and disease have dissipated.
When I first started the MP, I had a good deal of immunopathology in the lower L4 and L5 disks of my spine. However, these symptoms gradually waned, and are now minimal. I can walk quite a bit – so much more than I ever could before. This year, I was finally able to return to Spain, and it was the first time in five years that I could walk without any pain. Pre-MP an MRI had confirmed that the L4 and L5 disks were swollen. Since I no longer have symptoms associated with the swelling it’s on my agenda to have that test repeated to prove they are healed. Whereas before I couldn’t bend over to put on my shoes or even my pants, today I can easily touch my toes and the flexibility in my spine has increased tremendously.
I wasn’t prepared for my legs to swell due to immunopathology, but while bacteria in my legs were being killed, my knees and ankles became red and swollen. However, these issues also resolved as I wore away at my bacterial load. My muscle spasms have significantly diminished. No more stepping off a curb the wrong way and getting a terrible spasm in my rear end or neck.
I used to have terrible headaches that are no longer a problem. Because of the headaches, I used to take up to six Tylenol a day. Now I hardly ever take a Tylenol. The same goes for Valium and Xanax which I used to take in order to keep my muscle spasms and my nervous system under control. Now I only take those meds on rare occasions when I think I may be subjected to a lot of stress.
Before the MP, I had also had symptoms in my chest. They were hard to describe – it felt as if all the energy in my chest was wrong, as if there was not enough energy going to my heart. I was always concerned about pain and weakness in this area. During the treatment I did have increase in these symptoms – to the point of having chest pain, but these feelings have gone away. I have had heart tests done which show I have an anatomically healthy heart.
My colitis and IBS symptoms have improved immensely. I can’t even think of the last time I had diarrhea or colitis-like symptoms.
Although for a while my immunopathology brought back periods where I was very emotional or paranoid, those feelings have now subsided and I feel very level headed. My thyroid levels, which at one point during treatment became unstable, have now bounced back into range.
And I can once again drink alcohol! I used to have terrible reactions to alcohol. One drink would make me hungover for days. But this past Christmas, I actually took shots of whiskey, held up fine, and enjoyed the taste. My nails are looking better and although I’ve had dandruff all my life, I go through periods now where it completely goes away. Whereas I used to have a twitching in my fingers (particularly the thumbs), I haven’t noticed it for months.
At one point, I suffered from painful and swollen eyes (they just killed me!). It felt as if there were hairs inside my eyeballs trying to get out. These symptoms have largely subsided. I still get some cycles of eye irritation as I continue to heal – these symptoms are exacerbated if I get extra light in my eyes from spending too much time on the computer.
During the 1990s I had an earache, combined with the feeling that I had water stuck in my left ear and discomfort in my cheekbone. This caused me to continually rub under my cheekbone for years. My ears were so uncomfortable that I had to hold them closed when I was in the shower. Now these issues are completely gone. I am even taking water aerobics classes where my head is totally submerged under water.
My writing skills are still somewhat affected, although my ability to spell and write has gotten much better. I no longer find composing even short emails or letters to be a daunting task.
Although I still struggle with occasional insomnia, mild muscle fatigue, and muscle discomfort after exercise, for the most part I bounce around walking and talking every day without thinking about my symptoms at all. I wake up in the morning and stretch my muscles and am surprised to find that I don’t have spasms or pain. I still feel my neurological system isn’t 100% healed as I do get an overwhelmed feeling sometimes and occasionally wake up on the wrong side of the bed, have extra gas, get a stuffy head, and feel some body stiffness. These symptoms are worse if I wear myself out (get over-tired).
In terms of total recovery, I’d say I’m about an 8 on a 10-point scale. If I continue to improve at this pace I think I will be able to ride a horse again in about a year.
At the start of the MP I was very sensitive to light. Consequently, I was strict about avoiding light and wore my NoIR sunglasses regularly. But recently, I volunteered for three weeks on Wednesday afternoons at a nature preserve. I worked inside, but there were periods of time where I joined other volunteers out on the deck in the sun. Although I expected to get a rise in symptoms due to the sun exposure, afterwards I felt just a bit tired from the new experience of working and being on my feet for hours, but this probably had very little, if anything, to do with the sun. I find that heat from the sun can still flare my symptoms occasionally – so heat from the sun is more of a problem than the light itself.
Now I only wear my sunglasses when I am going on a long distance car ride in the sun, or when it’s very sunny outside. I don’t need to wear them in the supermarket or at the mall anymore where, happily, I find that I can tolerate the light without a problem.
…..Do it! It will change your life and it’s the only cure that exists for your chronic disease. Don’t try too hard to analyze what exact bugs you have. We are all “pea soup” and in the end it’s not important. Bottom line is that your immune system is out of balance and at war with something. When you start the treatment, don’t push yourself too hard and try to raise your dose of antibiotics too quickly. Because I had just re-married when I started the MP, I took occasional breaks and ramped my antibiotics slowly. But at the end of the day I still got better. Keeping your immunopathology reaction manageable, so that you can still have a life while on the treatment, is important. Also, I think it’s important to give your body time to recover from the release of toxins that accompanies immunopathology. Use the website and try to read as much as you can. Reach out and email someone for support if you get confused. Don’t expect it to be predictable. The waxing and waning of symptoms is confusing so try to look towards the bigger picture.
I plan to enjoy life and travel again, do sports, maybe even ride a horse. I plan to continue to do the MP and recover fully. It might take a year, it might take longer, and I don’t worry anymore about the length of time. I view the process so differently now. Actually, since L-form bacteria have been linked to aging, I feel lucky that I am getting a chance to kill any aging-related L-form pathogens or “CWDs” in the bud. So maybe I’m even slowing down the overall aging process in my body.
Yesterday, by no accident I’m sure, I was talking to someone (turned out to be a scientist) while volunteering at the preserve and found out his young wife is very ill with chronic fatigue, etc. They have visited many doctors without hope or diagnosis. This morning I sent her all the Marshall Protocol research materials and I won’t be surprised when she joins the growing group of those who are healing, thanks to the MP.
Individually we can share our personal stories with people we meet. Do the MP and be an example of healing through the MP. Example is the best form of teaching. I think that we are in the pioneering stage of learning about chronic immune disorders and disease processes thanks to Dr Marshall and all those doing research in this area. It’s a grassroots movement but it’s growing.
Thank you, Dr Marshall, and thanks to all the dedicated Protocol Moderators and Staff for their years of support. Thank you, Amy, for giving us a forum to share our hope.
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.