4 Nov 2007
She used to alarm others with her wheezing and now she can run up the stairs of her house and not even think about her breathing. In fact, this Texan is literally singing about how good she feels thanks to Autoimmunity Research Foundation’s Marshall Protocol. Shirley J. will now take your questions.
I was diagnosed in 2004. It was very scary to be told I had a disease that other doctors believed has no cure. My doctors told me that few people die from sarcoidosis (which is incorrect), but right around that time football player Reggie White died from sarcoidosis. I was very alarmed.
I started researching sarcoidosis on the internet and found myself at a support site. Marshall Protocol nurse moderator Meg Mangin was also a member of the site. She emailed me an overview of the treatment and also warned me not to take prednisone because it is a steroid that suppresses the activity of the immune system and allows L-form bacteria to spread more easily. Then, Belinda Fenter, another MP moderator helped me find an MP doctor (we both live in Texas).
I started reading the information on Sarcinfo.com – a site created by Autoimmunity Research Foundation that was a predecessor to MarshallProtocol.com. As I started to read and understand the science behind the Marshall Protocol, I knew that Dr. Marshall was onto something. It makes so much sense that Th1 illnesses are not genetic but due to the spread of bacteria, and that pulsing the antibiotics gives the body the opportunity to fight these pathogens. I started the MP in January of 2005.
I started wheezing off and on and then it became constant. One day while working out I felt like I was going to pass out because my airway was so constricted. I used to be very self-conscious about my wheezing especially at work and talking on the phone. One day I was talking to my director at work and each time I would take a breath in, it sounded like crackling paper. I would cough really hard because my airway felt like it was stuffed with cotton. My director at work was very concerned about me starting this unknown treatment until I gave her the information on the MP. It wasn’t until she started to see my progress that she became confident that the protocol works. Prior to starting the MP, I had insomnia and experienced soaking night sweats. Due to lack of sleep, I suffered from cloudy thinking and brain fog.
When I started the MP I had steady immunopathology that was consistent with my disease symptoms. The flares in symptoms correlated with each dose of antibiotics so I knew that the symptoms were due to my body dealing with the consequences of dying bacteria. A week after starting Benicar my insomnia completely resolved. After that point, I never again had trouble sleeping through the night.
My brain fog went away four to five months into the treatment. Six months into the MP I began to notice a big difference in my level of wheezing and the “stuffed with cotton” feeling began to drop. I started to be able to expel air in a normal way. Before the MP it had felt as if there was a balloon blocking my airway, but at the six-month mark it seemed as if the balloon was shrinking and when I was in certain positions the airway would open up again.
19 months into the MP, I noticed that I wasn’t even wheezing every day. My husband was amazed at how much my breathing had improved. About two years into the MP I had to clear my airway at work and my director said, “Shirley I haven’t heard you do that in a long time”. I said, “I know, isn’t it wonderful?”
I feel almost normal again. My energy level is great. My airway feels a lot more open. When I yawn deeply I can fill my lungs up very well, and when I exhale, I don’t hear that wwwhhisstllle. I don’t feel my lymph nodes sticking together the way they used to. When I talk, I do not wheeze. When walking and talking I don’t feel air deprived. My last CT scan showed that my lung fields are clear and the lymph nodes are stable. When I mow the front yard I smile because I can mow like a pro. And no wheezing!!!!
The other day I was singing at my desk and my Director heard me holding a really long note. She came out of her office and said, “Shirley, I haven’t heard you sound like that in almost three years! You sound great!”. I didn’t even have to take a deep breath in order to hold the note. My voice sounds so much better. Much like when I used to sing for a living. It’s good to know that if I need to sing, I have my voice back and my lung capacity has returned.
These days, when I walk up high flights of stairs, I don’t even think about my breathing. Over a year ago, my husband and I moved into a new house. When we were first looking for a home, I still felt a little like cotton was stuck in my chest, and I would try to clear my chest all the time. Even when we first moved into our new home, I had a feeling of fullness in my chest, and was still wheezing. Now, it is wonderful. Sometimes I wheeze upon exertion but those occasions are few and far between.
I am exercising 5 days a weeks walking 2 miles in the morning. My husband and I walk our dog every Saturday morning for about two miles at a park near my home. The park is hilly, and let me tell you on the second time around the park my legs can feel the muscles working. My lungs do great!
Interestingly, my sense of smell has returned. It seems that I can smell things from a mile away. I can smell my neighbor’s cooking. I realize that my dog can smell stinky if he hasn’t had a bath! I am just amazed at how I can smell things now.
Most importantly, I no longer fear for my life and have great hope for my future.
I was part of the first group of patients to start the treatment so at first there was a bit of uncertainty in terms of whether or not I would completely recover. Now, of course, I have no more doubts along those lines! I also started the MP at a point where I was trying to move up in my career. During meetings at work I had to wear my Noir sunglasses while I was speaking with the leaders of the company. Sometimes it was hard to communicate and I felt self-conscious. They never asked why I was wearing dark glasses and consequently I never offered any sort of explanation.
I no longer need to wear my sunglasses indoors. I only wear them when I am outside in the sun. I also no longer have adverse symptoms when I get sun exposure, although I still wear long sleeves when I am outside.
Hang in there. It will take time to get better but you will get better.
About six months into the MP when I still had to avoid light, I went to get a blood test done. It was during the height of summer and the lab had huge open windows. I walked in with a long, dark, coat, a scarf, a hat, mittens and gloves. Everyone looked petrified. I thought to myself, “I should yell out ‘ALRIGHT EVERYBODY’ and then quietly say, ‘don’t be alarmed, I am just on the Marshall Protocol.’ But I didn’t say a word. I just walked in and took my hat, and gloves off and waited to be seen by the lab tech.
Life lies ahead. We really would like to have a family so we may look into adoption or who knows, maybe we can have a family on our own. The most important thing for me is that I am healthy and happy. I am back writing music again and writing jingles. I am working on one for the MP and I really look forward to the day when I will see advertisements for the MP on TV – much like the adds for other new treatments. I plan to spread the news about the MP in any way that I can.
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.
Amy has spoken at several international conferences and authored several peer-reviewed papers on the intersection of bacteria and chronic disease.
If you have questions about the MP, please visit CureMyTh1.org where volunteer patient advocates will answer your questions. Another good resource is the MP Knowledge Base, which is scheduled to be completed within the next year.