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.
17 Responses for "Interview with Shirley J. (Saj) - Sarcoidosis"
Sure enjoyed reading your story. Did you ever start prednisone? I, too, have sarcoidosis and want to start the MP–but haven’t been able to locate a doctor. Would your doctor possibly know a doctor in the Knoxville, TN area that would go along with the MP? God Bless you, Cheryl Koch
Regarding the previous e-mail, I am also wondering if there is a specfic diet that I should be on, or if there are alternative medicine treatment that I should try. Please
I discovered a small nodule on my left forearm, and had my PCP assess me who recommended I be seen by a surgeon. The suregeon assessed me and recommended that I have it removed which I did in 2002, and pathology came back with diagnosis of sarcoidosis. I was immediately worked up with Pulmonary Function Test, Chest B-Ray, Bone Scan, EKG, Labb Work, Eye exam, Gallium Scan= all were normal. Approximately six months afterwards I developed another nodule on my right forearm, but the Pulmonarey MD that works in my hospital, informed me to see a dermatologist, for the treatment for skin lesions is not surgery but steroid injection to the “lump Area”. I went to the dermatologist he injected the nodule and no more lesions appeared until 10/30/07 whereby I noted a lesion on my right upper forearm in the shape of an eyelid two smaller lesion below my left sholuder, as well as I had been noticing some reddened area ower extremities. I immediately made an appointment with the dermatologist who informed me that the redness and lumping lower extremity hardness was erythema nodosum. He injected the lesions with Kenalog 20mg, and gave ma an intramuscular injection of Kenalog 40mg. for the erythema nodosum. the skin lesions from left arm are gone, the right remains the same, and there is some noted important in loere extremities. I have recently discoverd another skin lesion of left upper area of knee. I am really not sure as to what my next step should be, and/or if I am being treated correctly. I do not know of any local MD here in Miami, Florida who specializes in this disease. I would be truly grateful, if you could advice me on what to do. Thank you
Hi Maria,
The appearance of lump on the body is very common in people with sarcoidosis. I just interviewed a lady who was diagnosed with sarc after two lumps formed on her arm. She is now a little over two years into the MP and her lumps are completely gone as are pretty much all the rest of her symptoms. Her interview will be up on this site in about two days.
What your doctors are doing now is simply injecting or giving you medications that slow your immune system. This means that less of the L-form bacteria causing your disease are killed in the short-term, making some of your symptoms temporarily resolve. That is because it is when L-form bacteria die that they release cytokines -proteins that cause your symptoms to flare.
These treatment may help you temporarily but they will make you MUCH sicker in the long-term because without the immune system working up to par the L-form bacteria in your body will easily spread to new tissues and organs. Inevitably you will get sicker and relapse. You need to kill the bacteria causing your lumps and making you sick.
The only treatment that will allow you you do that and successfully recover is the Marshall Protocol and that is exactly what you should do.
Go to the following site: http://www.curemyth1.org (Th1 is a name currently given to diseases caused by L-form bacteria, hence the name cure my Th1)
Once on that site you can ask questions about the MP, how to find a doctor etc, and they will be answered by experienced patient advocates that can guide you on how to proceed.
Good luck and I’m glad you found the MP!
Amy
Also Maria - there is a specific diet you should be on - one in which you avoid vitamin D. The reasons for this diet are explained on the MP website:
http://www.marshallprotocol.com/forum2/2434.html
This article will also explain what diet will help you regain your health:
http://bacteriality.com/2007/10/02/diet/
But the moderators at curemyth1.org can also guide you on the diet you should be eating.
Best,
Amy
Hi Cheryl,
Hopefully Shirley will write you back (not sure how often she is on the site), but in the meantime I want you to know that you can request a list of MP doctors in TN at the Marshall Protocol study site. Go here:
http://www.marshallprotocol.com/forum11/9355.html
But as I advised Maria, you definitely want to go to http://www.curemyth1.org so that the experienced patient advocates can answer all your questions in greater depth.
Good luck!
Amy
I have recently been diagnosed with sarcoidosis. It is so hard to explain to my family what exactly is sarcoidosis. Looking for a doctor who specializes in sarcoidosis treatment in Hampton Roads, Virginia area.
Hi Corlis,
I’m sorry to hear you have been diagnosed with sarcoidosis, but you are in the right place. The Marshall Protocol will allow you to regain your health.
Sarcoidosis is an infection - you have accumulated different species of L-form bacteria that are causing your symptoms. Be sure to read the articles on this site which describe L-form bacteria in greater depth. Perhaps you can print out some of the articles for your family to read so they understand where you are coming from.
Most importantly you should go to the following website:
http://www.curemyth1.org (Th1 is the name given to diseases caused by L-form bacteria, hence the name Cure My Th1)
The experienced patient advocates on that site will answer your questions about sacoidosis and guide you on how to find a doctor in your area. These can also address your other concerns.
Best,
Amy
I was recently diagnosed with sarcoidosis. However, when having flare-ups, I do have respiratory problems, but that is comparatively a small (in a sense) problem. The worst of the symptoms is that I have severe elevations in my blood glucoses, almost to the point of having to take insulin. When the sarcoidosis goes into “remission” so does the diabetic-like symptoms. I am a little uncertain about this disease. I have symptoms such as: night sweats (I thought it was menopause), fatigue, dermititis, weight loss (50 lbs.), pain, fever, chest pains, loss of appetite, diarrhea. Can you help me better understand this disease as my medical docs don’t seem to really understand all the symptoms and causes.
Hi Edna,
I understand your confusion about sarcoidosis. But the new research described in the articles on this site points to a rather simple (and correct!) explanation Sarcoidosis is an infection. You have accumulated different species of L-form bacteria that are causing your symptoms.
Sarcodosis is by no means just a lung disease. L-form bacteria can spread to many different organs and tissues which is why you have multiple symptoms in differnt areas of your body.
Your symptoms sound rather similar to those of Mirek Wozga. An interview with him here:
http://bacteriality.com/2007/11/17/interview11/
As you can see, he used the Marshall Protocol to get better and that is exactly what you need to do. You will never beat this illness unless you kill the bacteria that are making you sick.
Go to the following website: http://www.curemyth1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th1)
The patient advocates on that site can answer your questions about sarcoidosis (free of charge) in greater detail and guide you down the path to recovery.
All the best,
Amy
I was diagnosed with sarcoidosis in July of 2005 and have been on Prednisone since November 2006. My concern with the MP is that many doctors do not agree with the methods and the science. Can you fill me in on more information and whethere there are any doctors in the Fairfield County area of Connecticut who might have knowledge of the protocol.
Hi John,
Thanks for writing. In my opinion, the reason some doctors don’t agree with the MP is that they don’t understand the treatment and haven’t taken the appropriate time to do so. In reality the MP is based on very solid science and there are a great number of case histories showing that people who complete the treatment truly do recover.
Doctors are notoriously slow to accept change, and this treament is very new But if you look at the number of patients (none!) recovering from sarcoidosis thanks to mainstream approach it doesn’t bode well in terms of your sticking with their advice. The prednisone you are on now is only slowing your immune system, not making you better. You want to go from covering up your symptoms with steroids to actually killing the L-form bacteria making you sick. The following is an excerpt about prednisone taken from one of my other pieces.
“Before starting the MP, many people may feel that they have improved through consuming vitamin D and taking steroids such as prednisone. In reality, these compounds inactivate the VDR, preventing the immune system from effectively killing L-form bacteria. Since it is the killing of L-form bacteria that generates an increase in painful symptoms, people may experience short-term relief when using vitamin D or prednisone as their immune system shuts down and less bacteria are killed. However, in reality, this situation allows the bacteria to spread more easily.”
Thus, I urge you to stop the prednisone and start the MP instead
As for finding a doctor who will work with you:
Go to the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th1)
The patient advocates on that site will show you how to request a list of MP doctors in your area. They will also answer any other questions you have about the treament.
If you need to better educate the doctor you already have, you might show him some of Dr Marshall’s papers and presentations.
http://www.trevormarshall.com/papers.htm
And his wikipedia biography:
http://en.wikipedia.org/wiki/Trevor_Marshall
Also, I would read all the information availiable on the Marshall Protocol Study site:
http://www.marshallprotocolcom
Best,
Amy
hi
I live in the u.k. and my wife suffers from sarcoidosis, she has been in and out of hospital on a regular basis and the medical proffession here, appear to have given up on saving her. they now want her to go into a home. I have been reading your web site on the condition, and printed it out, my wife showed it to a doctor but they have just frefused it out of hand. the m.p. seems to be the light at the end of the tunnel that I have been searching for, but no-one over here seems interested. can anyone help me
Hi James,
I’m so sorry to hear about your wife’s situation. But your are right - the MP is the light at the end of the tunnel that can give your wife her health back, so you need to do everything in your power to find a doctor who will work with her.
I admire the fact that you are such a good advocate for your wife and have already tried to present information to her doctors. They seem very close minded which is a shame.
But have you shown them Dr. Marshall’s papers and presentations? There are quite a few which might help them understand that he is an established scientist. See here:
http://www.trevormarshall.com/papers.htm
If they still refuse, what about going to a new doctor? Have you tried requesting a list of doctors in the UK from the Marshall Protocol study site? You can do that here:
http://www.marshallprotocol.com/forum11/9355.html
Also, perhaps you could get on the Marshall Protocol study site (www.marshallprotocol.com) and try to search for other patients who live in the UK - every person on the site has a profile that states where they live. Them you can ask each person who their doctor is and how they found a doctor.
Last, you should post about your situation on the following site: http://www.curemyth1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th1).
There are experienced patient advocates on the site who answer questions for free at all hours of the day. I’m sure they will also have even more advice or information that would allow you to convince your wife’s current doctors to let her start the treatment.
Best,
Amy
Hello all,
I am so sorry. I just checked in. Life has been so busy lately and I wanted to show my husband my interview with Amy. It looks like Amy has answered some of your questions for me. Please forgive me. I didn’t expect anyone to respond. You can follow my progress on http://www.marshallprotocol.com. You will need to register first. My User I.D is wytnez.
Avoiding any and all forms of vitamin D in your diet is crucial to the success of the MP as well as light avoidance. These measures alone may kick start your body and you may begin to experience what we call immunopathology or Jarish Herxheimer. This is an immune response that may make you feel worse because the bacteria began to die and produce inflammation, but… you will start to feel better when you begin Benicar (the miracle drug). The best advice I can offer you all is to go to the website and read over all of the material that describes the MP overview, request a list of Physicians in your area and most importantly, begin to protect your skin by covering up completely when going out and protecting your eyes by wearing the infamous NOIRS 10% inside and 2% outside. NOIRS has a website that will show a variety of styles and I believe they still offer a discount when you mention the MP. Once you register on the website, you can send me a private message anytime because I check the website daily and post my continued progess at least every two weeks. I encourage each of you that has questions and who have been diagnosed with this awful disease to be proactive in taking care of your health and get on the MP asap! Let me tell you, this protocol works!!
Saj
I can’t tell am suffering with this diease or not after few day i am going for testing of bronchoscopy. Now i am suffering from ankel pain and problem in breating.
You just tell me what we fell whenthat deases concern with lever.
Kanchan
Hi Kanchan,
Regardless of your test results it sounds to me as if you are suffering from Th1 disease - a form of diseases caused by bacteria that have mutated from regular forms of bacteria, lost their cell walls, and are able to live undetected inside the cells of the immune system.
There are many species of bacteria. Depending on which species a person has accumulated they suffer from different symptoms - these include joint and body pain, and difficulty breathing, or the symptoms you are suffering from. They also cause sarcoidosis if that ends up being your diagnosis. Read more about L-form bacteria here:
http://bacteriality.com/2007/08/15/l-forms/
The step you need to take at this point is to start the Marhsall Protocol - a treatment that effectively kills L-form bacteria. Once all your bacteria have been killed, your symptoms will go away and you will be healthy once again. The Marshall Protocol is the only treatment that will allow you to kill L-form bacteria correctly.
Read more about the treatment here:
http://bacteriality.com/about-the-mp/
I’m sure you have more questions about the treatment - how to get started, how to talk with your doctor about it. In that case you should post on the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th1)
The experienced patient advocates on that site will help guide you with more information about the treaatment.
You should also read as much information as possible on the Marshall Protocol study site. This forum is a good place to start:
“Essential Information About the Marshall Protocol:
http://www.marshallprotocol.com/forum2/
You CAN get your health back!
Best,
Amy
Leave a reply