8 Nov 2007
In 2003, this school teacher from Indiana was suffering from sarocoidosis, fibromyalgia, CFS, and myriad other symptoms. Today, thanks to Autoimmunity Research Foundation’s Marshall Protocol, she considers herself healthy and is traveling the world with her husband. Meet Carole Morgan.

Before I found the MP, I was actually undergoing tests for cancer. I had originally visited the emergency room in December 2003 because my legs had become so swollen and painful that I could hardly walk. An abnormal chest x-ray revealed extremely swollen lymph nodes. My physician referred me to a pulmonologist who ordered more tests, including a CT scan for my bloated and painful stomach. He then referred me to an oncologist, feeling that I probably had cancer. More scans and tests were performed because they just weren’t sure what form of cancer I might be suffering from. First they thought it was lymphoma, then bone cancer, then finally lung cancer. While they were pondering a diagnosis, I started to do my own research on the Internet. Since the second possibility listed from the CT and PET scan reports was sarcoidosis (a disease that I had never before heard of), I started to research sarcoidosis on the web and found sarcinfo.com—a website created by Autoimmunity Research Foundation that was the predecessor to MarshallProtocol.com.
The science behind the Marshall Protocol seemed to make so much sense. Also, I realized that I had nearly every symptom of sarcoidosis, as well as hypervitaminosis-D—a condition in which exposure to light flares a person’s disease symptoms. I could literally go down the list of symptoms and check each one off, such as swollen salivary glands or a metallic taste in my mouth. Since I was sensitive to light, it was another clue that I was on the right track. During the testing process, I shared this information with my family doctor, who luckily agreed to support me in the MP. Since I wanted to start the treatment immediately, he ordered the blood tests, prescribed the medicines, and began to follow my progress.
However, my oncologist was still adamant that I might have cancer, insisting that I have a mediastinoscopy—a surgical procedure to examine the inside of the upper chest between and in front of the lungs. I did not want to have the surgery done because I was convinced that I had sarcoidosis and could use the MP to treat my illness. Plus, at the time, I had extremely high blood pressure, which put me at greater risk for problems during surgery. Nevertheless, he insisted that I have the mediastinoscopy, so I went along with his wishes in order to prove that I was right.
Sure enough, when the procedure was over, the surgeon immediately turned to my husband and said, “She definitely has sarcoidosis.” So I had diagnosed myself correctly from the start. I then proceeded with the first antibiotic of the Marshall Protocol.
My health had been deteriorating for decades before my doctors started thinking that I might have cancer. When I was a young child, I had chronic inflammation involving my kidneys, tonsils, and sinuses. I also had prolonged pain behind my knees. In retrospect I realize that I was very light sensitive at an early age. In family photos I was always shielding or closing my eyes. By the time I had reached my late 20s, I had gone to numerous doctors looking for ways to treat what had developed into severe back pain. I was told that my x-rays resembled those of an 80-year-old woman. Later I was diagnosed with osteoarthritis and had back surgery in 1980.
Many breast lumpectomies were performed throughout the years, beginning in 1975. In 1982, I developed a pituitary tumor that was also removed by surgery. In 1992, my gallbladder was taken out, and a complete hysterectomy was performed in 1999. In the meantime, I was dealing with colon polyps and began to have serious thyroid issues as well as blurred vision. On occasion when I turned my head, my view became distorted and I had reduced peripheral vision. Sometimes it would seem as if the person I was looking at only had one eye. I also began to have excruciating migraines and often ended up in the emergency room because they were so painful and accompanied by non-stop vomiting. Then, I developed Temporo-Mandibular Joint (TMJ) Disorder, and my neck and back pain got worse. I also had big-time cardiovascular issues as detected by various EKGs.
Furthermore, I had a host of gastrointestinal symptoms and a history of recurring colon polyps. I had severe muscle and joint pain and was diagnosed with fibromyalgia. During the mid 1990s, I had a case of mononucleosis that never really went away. The flu-like feeling and the symptoms of fatigue persisted, and I was also diagnosed with CFS. I went through a spell where I felt that I was in respiratory distress, unable to naturally inhale or exhale. I was also plagued with unrelenting bladder infections and chronic bronchitis. My blood pressure was increasing, as were the PVCs and tachycardia, so I was put on a beta blocker. Eventually the high blood pressure caused the development of left ventricular hypertrophy which leads to heart failure.
My teeth also started to fracture, and my fingernails would break off at the level of the cuticle. My throat would tighten when I tried to eat, and I would often choke on food that would get stuck in my throat. My hair started to fall out. I lost all strength in my legs. When I was young I was a dancer, but later in life I had problems even bending without falling over. I also had inner ear problems in that when I would turn my head, I got extremely dizzy and on occasion would need help in order to walk straight. Because of my vision it was very difficult to work at the computer screen.
Finally, I was deteriorating mentally. I often wasn’t thinking clearly. Sometimes I couldn’t remember how to spell certain words. One time I was engaged in a normal conversation when the word “goat” just came out of my mouth. It was in no way relevant to the conversation. I also developed a buzzing and fluttering feeling in my brain.
When I first got onto sarcinfo.com, I read that I should stop taking any supplements (other than those needed to correct a recognized deficiency), and I did exactly that. I had been taking extra vitamin D because I was told that it would help my bones, as well as a multivitamin that also contained vitamin D. I had also sought out foods high in vitamin D because I incorrectly assumed that my bones might benefit from high amounts of the “vitamin.” Within just a few weeks of stopping the supplements, I started to feel better. Soon after I started Benicar, I could bend my knees to an improved angle. I was also used to my muscles feeling like mush – to the point where even my massage therapist didn’t think it was a good idea to massage them. But once on Benicar they started to feel different and more stable.
I felt symptoms of immunopathology as soon as I started taking minocycline. Since I’m pretty sure that every inch of my body had been infected with L-form bacteria, I did experience strong and diverse immune responses. At first, the immunopathology in the area behind my knees was the hardest to deal with. At one point I even contacted a surgeon to see if there was some way he could help the knee pain, but the board moderators told me to hang in there—that if I put in enough time, it would go away. And they were right. Now, over three years into the MP, I no longer have pain behind my knees.
Three months into the MP, a CT scan showed a slight decrease in lymph node size. I was encouraged. Then, three months later, another CT showed significant improvement, with resolution of infiltrates! At that point my doctor dropped any skepticism he might have had about the MP. He too was convinced that it was working. The sores in my nose went away, and my migraines improved tremendously. With each new CT scan, my results were better and better. At about a year to a year-and-a-half into the protocol, my CT scan was normal! My other blood markers also returned to normal. My last pulmonary function test showed that my lungs are working even better than what is considered normal.
No matter how much I was covered, when I got too much sun I experienced sensitivity with increased throat pressure or tightness, palpitations, a headache, nausea, or swelling. I did not become super sensitive visually until I had been on the MP for about six months.
I can do just about anything I want. I still don’t spend prolonged periods of time in the sun, but I can tolerate a good amount of light. This past summer I even got a small tan on my face, chest, and hands with no rise in symptoms.
My fatigue has been replaced with renewed energy. I have better balance and agility. I have strength and muscle tone in my legs again, and my back/neck issues are totally gone. I can now lift, twist, and engage in all kinds of movement. The pain and swelling in my stomach, legs, and feet are gone. My digestion and sleep patterns have normalized. My hair is growing back thickly again; and every time I go to the hair dresser, she says, “Ah! I’m so glad you’re beyond that!” For the most part, my headaches and blurriness are gone, although I may have a slight headache here and there, which is quickly dampened or eliminated with an extra Benicar.
My blood pressure readings are back to normal, and the chest pain and pressure have disappeared. The TMJ and teeth sensitivity have resolved. Until recently, if I tried to carry a shopping bag, the pressure on my joints would mess up my fingers for a very long time. Now, I can carry shopping bags without any resulting issues. Plus, my two trigger fingers have returned to normal. I have reduced my thyroid meds to a level that is less than half of what they used to be.
Really, all my symptoms are gone or greatly improved. Some of them were so bad that I feel like I’m 1000% better. There is no doubt in my mind that the MP has literally saved my life. But I still am experiencing immunopathology, which tells me that I still have bacteria to kill. I don’t mind staying on antibiotics for a few more years, because I feel I’ve already regained my health. Now I’m just tweaking my health until I am absolutely confident that I am 100% better. For example, the cyst on my liver is still there, although it might be a little smaller. Perhaps it will go away completely.
Oh, yes! Last spring the Dexa scan revealed that the MP is working toward suppressing my bone reabsorption. My T readings have improved and are reversing direction.
My family physician has been incredibly supportive since day one on the MP. He reads the information that I provide him about the treatment and writes whatever scripts are needed. He definitely vouches for my progress. He has told me on several occasions, “This treatment has worked for you!” He has also told me that he is very willing to treat other patients with the MP.
Hmmm…I can’t think of anything. Oh, well it was difficult to realize that during the times when I was sensitive to light I could no longer garden. I love to work in my flowerbeds. There is also a rather sunny beautification project that I helped to develop downtown that I could no longer tend to, so this made me a little disappointed. But I soon realized that the guidelines were there for a reason. At the start, even when I would go outside covered from head to toe, I would often still get a rise in symptoms from the sun. However, that reaction has gradually improved and is not a big issue anymore.
Not everyone has as severe sun sensitivity problems and many are able to use sunscreens that contain zinc oxide or use prescription ketoconazole cream, which allow them to have more sun exposure. See here.
Do your research. You must follow the guidelines diligently. Try to be patient because the MP is not a quick fix.
After 34 years of teaching, I am working as a substitute teacher almost every day. Just today, I spent four straight hours singing with primary children. I am now able to participate in outside recess duty, where I am often in the sun. I have also been traveling with my husband and actively enjoying our retirement together. In May, we visited the Middle East. I walked and climbed through the pyramids in Egypt, and later in July walked throughout the large cities in Italy. On an earlier trip, I hiked around 10,000 ft. of mountainous terrain. Despite the fact that I had not exercised much while on the MP, except for walking our dog, I fared very well. Since I was not “physically fit” as in prior times, I was assuming I would be sore from the exertion. To my surprise, I only had very minimal muscle soreness that went away quickly. Even after a fall, I was hardly sore. So basically I plan to continue enjoying life!
33 Responses for "Interview with Carole Morgan - Sarcoidosis, fibromyalgia, CFS"
My husband has neurosarcoidosis and has been on the MP for almost two years. He has not been able to follow the special diet (so restrictive, he just can’t stay on it) and I think that is why he didn’t do any better and only got worse with symptoms and problems relating to Sarcoidosis. Were you able to follow the strict diet? And do you think that is why you had the success you did? Do you have any hints that helped you with the eating? He has taken all the meds like he is supposed to but is worse, not better. I know and understand that following the diet is 50% of the program but he is just not able to do it and I feel like he has wasted two years on this protocol for nothing. I am wondering if neurosarc patients just don’t do as well or maybe the diet is the whole thing to blame.
It sounds like you have doubts, Karen, but to me it seems to me everything is going to plan. Anyone who has been through this treatment would take your husband’s severe symptoms to be a sign that he is generating the appropriate immunopathology just as he should.
As infections go, neurosarc is fairly severe. To me, it is in the same league as CFS. I happen to have a really bad case of CFS. At the two year mark I was experiencing immunopathology worse than ever. If you read the interview with Dr. Blaney, he talks about how different conditions tend to vary in terms of how long they typically take to resolve on the MP.
When it comes to diet restrictions, there are two main guidelines: 1. restrict vitamin D in your diet and 2. limit carbohydrates especially breads, pastas, etc. I will assume your husband is not having trouble with the former and that he is able to avoid seafood, etc. I agree– dropping breads and pastas from your diet is hard! It will really take one’s immunopathology to a higher level.
Here, I would encourage you not to worry too much about this either. Right now, your husband may want to shoot for moderate intake of carbs. As his immunopathology settles down, he can get a little more serious about it. In any case, I assure you that he’s making progress… even if he’s having more carbs than ideal.
Best,
Amy
Thank you for your answer. I probably didn’t clarify what I was trying to say. His symptoms are the same as they were prior to the protocol. When I say they are worse, it is because I feel the disease has progressed, not that the effect is because of him being on the protocol. Proof of this is that we can no longer afford the Benicar–he has been off of it for several months and feels the same as he was when he was on it. We had health insurance, when he first went on it and Benicar in the dosage for the protocol was covered. Then when he got too sick to work, we couldn’t afford health insurance anymore. We have been on the pharmaceutical program through the company that makes Benicar that provided it free or low cost, but they changed their program and no longer cover taking 4 a day and only cover 1 a day. His doctor even wrote a letter of medical necessity explaining why he has to take so many, but it still got denied. We are waiting for Medicare to kick in because he just got approved for Social Security and are wondering whether he should continue on the program or not. He does stay away from the vitamin D and seafood, but that is about it. The other is just too hard to follow. Part of the problem is that he is suffering so bad that he looks to food for comfort, one of the last comforts he has. When I say comforts, it is because he is not able to enjoy life anymore–he can’t work, can’t drive due to seizures, he is not even out of bed every day, so food is the comfort.
He also has CFS, so bad that he spends 95%-99% of his day in bed, so I understand where you are coming from with CFS. He has moderate to severe chest pain–that was his first symptom of Sarc and how he got diagnosed. He also has really bad neuropathy pain. Between the three of them, it is totally debilitating. Just trying to figure out where to go from here. Thanks for listening and responding.
Hi Karen,
I’m so sorry to hear how bad your husband is feeling. I’m also sorry that you can’t afford Benicar because that is a vital part of the treatment. I also don’t have insurance and am short on money.
I order my Benicar from this Canadian website where it is sold at a cheaper price. http://www.getcanadiandrugs.com.
I know it may not be possible but I urge you to put every possible penny toward getting the Benicar.
I hesitate to comment more on your husband’s situation because I am not trained in medicine nor an expert in how to manage the MP. I would venture to say that he IS experiencing immunopathology, but without the anti-inflammatory effects of Benicar it is very hard to handle the symptoms.
Are you posting on the MP site? It is very important that you start a progress report for your husband on the study site and tell the moderators (who have much more experience than me) about your husband’s situation. Just be honest about the Benicar, I’m sure they will understand.
Don’t forget that for those people who are as seriously ill as your husband the MP is probably a five year deal, and thus your husband is not yet at the point where he should feel improvement, just strong immunopathology. If he stays on the MP I am confident that his symptoms will decrease in time.
Best,
Amy
Your story sounds like mine. NONE of my doctors will attempt the protocol. I live in southern Idaho and they all think is sounds like bunk. How do I find a doctor close enough to go to that will even consider it??
Thanks
Laura
Hi Laura,
It’s Amy. I’m sorry to hear you can’t find a doctor. I assume you requested the list of doctors in Idaho from the moderators at the Marshall Protocol study site? Are you close to the border of any other state? You could request the list of doctors in that state….
Some people actually fly to see a doctor who treats MP patients. Then, there is often a way to conduct subsequent appointments over the phone. Perhaps you could post on http://www.curemyTh1.org about how to find one of these doctors.
What about looking for a completely new doctor in your area. If you get on the MP site you can find documents to especially formatted to be presented to doctors that describe the treatment. Try to learn as much as you can about the MP and print out as much relevant information as possible present it to a new doctor. Maybe he will be more open-minded.
You can also give the doctor copies of the DVDs from the last two Marshall Protocol conferences which feature excellent talks by Marshall and other researchers and doctors which may help convince him/her doctor that the treatment is an option. You can order those DVDs here: http://autoimmunityresearch.org/dvd-requests.html
Good luck!
Amy
This is Karen from previous comments. I will say, Laura, that you definitely need to contact the Marshall Protocol website and request a list of doctors. That is the only way we found one for my husband. We live in the Knoxville area of Tennessee and actually drive 4 hours one way to Atlanta to a doctor there that has him on the protocol. We have to go there once a month because one of his medications, by law, cannot be refilled, the pharmacy has to receive an original Rx, (it is not a MP med.)so the doctor has to write that one out each time we go. I have asked my parent’s doctor out here if he would be willing to be an “interim doctor” that will see my husband once a month and refill prescriptions and any other necessary MP testing, so we would only have to see the doctor in Atlanta every 4 or six months and he said “yes.” So, there is hope that even if you find a doctor kind of far away that has good knowledge of the MP, you might find one in your area with not as much knowledge, but willing to be an interim doctor, so to speak. Most “traditional” doctors who are older and who are “old school” are usually not willing to be open to new ideas–I have read this and found it to be true. Because of the fact that sarcoidosis is considered a rare disease and such a poorly understood disease to begin with, many of them never learned about it in med school, or learned very little about it. Both the doctor my husband sees in Atlanta and the doctor who is willing to be an “interim” doctor here are in their late 30’s or early 40’s and because of their younger age, they are open to newer ideas and follow the latest research more closely. They are both willing to read anything I bring them on the MP. Start with the MP website if you haven’t already(there is a specific section you where you can ask them for a list of MP doctors) and you may have to ask for MP doctors in surrounding states like I did. Also, younger doctors that are still building their business may be open to the MP since they are still trying to establish themselves–you may have to “educate them” about the MP and print out as much info about the MP as you can and bring it to them because most will not go home and research it themselves, even if you give them the website to go to–and that really is not fair to the patient, but that may be an option. If you find an MP doctor out of state and cannot afford to fly, this website has free air transportation if you meet certain financial guidelines: http://www.angelflight.org/flights/requirements.asp
I wish you the best. If you have any other questions I can answer, leave comment here and I will try to help in any way I can.
Karen
Your article gave me hope. Thank you very much. Rose Marie Arroyo Mendez.
Your article gave me hope. Thank you very much. Rose Marie Arroyo Mendez.
Ihave chronic sarcoid of lung and nose and face.
I suspect antibiotic treatment is what I need. Last summer my GP gave me oxytetracycline and I felt much better while on it. Going downhill again now I have been off it for a couple of months.Do you think the Marshall protocol is what I need?
How do I access information?
I am in the UK near Birmingham.
Thanks for any info
Mo
Hi Mo,
The Marshall Protocol is exactly what you need. It is the only treatment that will effectively kill the bacteria making you sick.
To learn more about the treatment go to the following site:
http://www.curemyth1.org
The patient advocates on the site will guide you on how to start the MP and also answer any questions you have about the treatment.
It’s also a good idea to start reading the information on the Marshall Protocol study site:
http://www.marshallprotocol.com
Good luck!
Amy
Hi Amy,
Thanks for your answer of Nov. 10th. You did give me encouragement to get my husband back on the Benicar and concentrate on the protocol. Three years to wait for any improvement is so long, it’s hard to wait for five years and easy to give up, especially when I know the diet restrictions, except for vitamin D and Omega 3 are not being followed. I will try that Canadian website for cheaper Benicar.
Thanks again.
Karen
Hello
My name is Deb, and my husband John, 51, was diagnosed with pulmonary sarcoidosis about 4 years ago.
I heard about MP and he spent 2 1/2 years on it.
The biggest problem he had was caused by Benicar
because he already has low blood pressure naturally.
This became so serious that he could barely get out of bed and function at all. He stopped MP last February and now itches so badly he is scratching his skin open. Not sure what to do from here. Any suggestions would be appreciated!
Hi Deb,
I cannot fully assess your husband’s experience on the MP without knowing more about what dose of antibiotics he was on, how he was following the guidelines correctly etc. Actually, I don’t usually answer questions about particular case histories because I am a reporter and not a patient advocate or moderator who is trained in answering this sort of question. You should post about your husband’s experience at http://www.curemyth1.org and you will get much more extended feedback from the patient advocates on the site.
Nevertheless, my personal opinion is that the reason for your husband’s very low blood pressure was not due to the Benicar but to his immunopathology. If your husband suffered from low blood pressure before the MP, then that is a symptom that would undoubtably return (and often does with a vengeance) when he started to kill bacteria.
I say this because I had the same experience. Pre-MP I was diagnosed with severe NMH - extremely low BP with frequent fainting. When I started the MP my low blood pressure symptoms came back quite strongly. But I knew they were not from Benicar, but just a return of my old symptoms as bacteria were killed. I had to struggle for a long time with the low BP symptoms but eventually they started to get better (were talking 2 yrs into the treatment) and improve significantly. Yet I am on the same dose of Benicar as always.
If the Benicar were the problem those people who start the MP with symptoms of low-BP (and there are many) would continue to have symptoms of low BP as long as they take Benicar. But, as in my case, the low BP symptoms tend to resolve while the patient is taking the exact same amount of the medication.
Also, the amount of Benicar used by patients on the MP is simply not enough to severely affect their blood pressure. If you look at the Benicar website you will see that once you take over 40mg Benicar (one pill), taking more pills will have no more affect on BP.
If your husband could barely get out of bed, that is almost certainly a sign that he had very strong immunopathology and a high load of L-form bacteria, and his current skin problems are almost certainly a sign that is bacteria are alive and well. They have probably spread and are generating more symptoms.
Many people who are severely sick find themselves in bed for long periods of the treatment, but that is the only way they can eventually regain their health.
I urge your husband to re-start the MP. Perhaps this time around he could dose his antibiotics more slowly? I think that if he stays on the meds long enough his blood pressure symptoms will begin to let up and you will realize it was not the Benicar causing them in the first place.
Best,
Amy
hi i have been suffering for 4 years of shortness of breath ,tierdness,flu like symptoms,headaches,back and neck pain,tremors,loss of appetite,tighness in the throat,tingling sensations,even numbness it has all got worse over the years but no one knows whats wrong.i have flare ups every no and then untill 7 months ago i got a wheezy cough which wasnt responding to anything.i have 4 kids 2 who are disabled all under 14 i cant cope anymore.i feel like i am the only person to be punished.
Hi Kay,
I am so sorry to her about your health problems and those of your children. I can’t imagine the difficulties you are facing on a regular basis. But Kay, you CAN turn this around. You are not the only one to be punished in the sense of dealing with so many health issues. Almost everyone who started the MP before you was suffering terribly and nearly all are reporting improvement, recovery, and well the return of a life after so many difficult years of illness.
Your symptoms are clearly the result of the fact that you are infected with L-form bacteria. But you can kill these bacteria - you can get your life back and return to a state where you can guide your children and have the energy to help them as much as possible.
Go to the following site: http://www.curemyTh1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th1)
There are patient advocates on that site who will work with you and guide you about how to manage the MP even when you have to take care of your children. Others have done it and I know you can too.
Give it a shot. Until then, stay strong. You can get better again.
Best,
Amy
hi
I am interested in knowing if Depression is a TH1 disease
Hi Stella,
Yes, depression is a Th1 disease. Some people on the MP report being depressed since early childhood and as they slowly wear away at their L-form bacterial load, the symptoms are indeed clearing up.
Of course, as you proceed with the treatment, symptoms of depression will return as part of your immunopathology - the body’s response to bacterial death (the immune system releases cytokines and toxins as the bacteria die). But since Benicar (the ARB medication taken by MP patients) has a palliative effect on this reaction, it goes a long way towards making immunopathology much easier to tolerate.
I had some depression, anxiety, and anger before starting the MP and now, 2 1/2 years later those symptoms have completely gone away. I can’t tell you what it feels like to have a clear head - everything seems so reasonable and easy to deal with. It’s amazing, and I didn’t even have severe depression.
The following articles describe the Marshall Protocol in greater detail:
“About the Marshall Protocol”
http://bacteriality.com/about-the-mp/
“Getting it right: how to correctly target L-form bacteria”
http://bacteriality.com/2007/10/11/antibiotics/
Also, I think you may be very interesting in reading the following interview with a man who used the MP to recover from depression:
“Interview with Paul Albert”
http://bacteriality.com/2007/11/10/interview10/
If you have more questions about the MP, a good place to post them is at:
http://www.curemyth1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th11).
The patient advocates on that site, who are volunteers for a non-profit agency, will answer your questions free of charge.
Good luck!
Amy
Hi
My son has severe anxiety..panic attacks, labrynththritis,and what appears to be AHD,OCD, or Bi-Polar type symtoms.He has been diagnosed with FMS and CFS/ME symtoms.
Will he have a bad time with immunopathy on MP..he is scared..butt i think it may be his only option.
Stella Voisey
Hi Stella,
I’m sorry to hear your son is suffering from so many mental and physical afflictions. There is little doubt that the MP can kill the bacteria causing his diseases, but as you have mentioned, the very nature of the die-off reaction may make it very difficult for him to actually progress through the MP.
There is no doubt that all his mental symptoms OCD, bipolar etc. will return as a result of immunopathology. I can see how that might put him in a place where he will be very cognitively unstable. A few suggestions…..
Your son can take palliative medications in order to manage his mental symptoms during the course of the MP. Is he taking any medications now that allow him to better tolerate his symptoms? Those medications (unless they are specifically contraindicated by the MP) can continue to be used while he is on the MP and should not interfere in any major way with the die-off reaction.
Another good thing about the MP is that immunopathology can be controlled to a certain extent. It would be critical that you help your son dose his antibiotics at a very reasonable or even slow pace so that he never experiences mental immunopathology that is too hard to tolerate. At the first sign that his mental immunopathology may be getting too strong, you could ensure that he lowers his dose of antibiotics. Also, because of its anti-inflammatory properties, Benicar should offer him some relief from his symptoms in general and from his immunopathology. So Benicar will be essential to his recovery.
Nevertheless, there is simply no way he will not experience exacerbation of his mental symptoms. You may want to ask yourself, “How much worse will his symptoms be on the MP than they are right now when he is not being treated.” The answer is that if he doses his antibiotics carefully there may not be much of a difference - except for the fact that once he is on the MP is mental symptoms are a sign of progress and bacterial death rather than a sign a further deterioration.
If your son does start the MP, it’s of upmost importance that he have a very good support network. You or other family members will have to be there to listen to him when he feels bad and to encourage him continually about the fact that although he may feel worse, his symptoms are a sign of recovery. It’s also important that you educate your son about the MP in great detail, or that he learn about it himself by reading all the material on this site and on the MP study site. If he truly understands the concept of immunopathology, and if he truly understands how much solid molecular science the MP is based on, then he will probably be able to push through the harder times by having greater faith in the treatment.
So that’s my advice to you. Palliative drugs if possible, careful antibiotic dosing, a tremendous amount of family support, and a very good understanding of the MP. With these factors in place he may very well be able to manage the treatment and successfully recover. I agree that the MP is his only option if he is to get well.
Since your son’s situation is difficult, I highly encourage you to post about his situation at the following website:
http://www.curemyth1.org (Th1 stands for diseases caused by L-form bacteria, hence the name Cure My Th1). The patient advocates on that site, who volunteer for the non-profit that runs the MP, will answer questions about his situation free of charge. It’s always good to get a second opinion, so I really hope that you post about his condition there are as well and find out if the patient advocates have further advice regarding his conditions.
Best,
Amy
For: Laura Pike. I noticed you said you reside in southern ID. So do I. I reside in Twin. I have a specialist I see in Boise; however, am currently not on the MP. I have 4.5 mos longer on another treatment. I have had some marked improvement; however, MP is not out of the question for me yet. I know exactly what you are talking about. Mostly in our small town, I believe it is because the doctors just aren’t educated in one special thing like this so it is really our job as a patient to provide as much info as we can.
Amy - thank you again for your email to me last month. I am keeping your info handy in case I need it in September when I go back to see my infectious disease specialist.
Laura - feel free to contact me by email if you want. Just thought it was great to see someone else that was a resident of S. Idaho.
Melissa
Laura - my email is: girlsunshyne@yahoo.com
Hi Melissa,
That’s so nice of you to share your info with Laura! I hope you guys can connect and possibly work on educating an open-minded doctor in your area about the MP.
Melissa, I really hope that you do switch over to the MP as soon as possible because when you start the treatment the die-off reaction will soon let you know if you have bacteria to be killed, and if you have bacteria to be killed, then only the MP can target them effectively.
I wish you both the best!
Amy
Hey, this is so interesting if not a little frightening. I am 20 years old and suffering with C.F.S. I started with it in septemeber 05. I have extreme fatigue, its actually difficult to get out of bed at the moment. Other symptoms inculde muscle ache, food intolerances, extreme mental fatigue, joint pain, constant sore throat, severe memory loss(cant remember conversations when Ive just had them or if I read something I will instantly forget most of it), brain fog - loss of concentration, communication problems due to energy example speech can be very slow at times and find it difficult to put sentences together and get my point across, cold extremities(feet have turned blue on the occasions), light headedness, strange dreams every night and hair loss. I also suffer from light and sound sensitivity. Low blood pressure on standing. I also suffer with other thyroid and adrenal symptoms. I have irregular and painful periods. I also so have candida and a parasite, which I need to treat. I also have other nasty bacteria in my gut. I have a very strict diet my intolerances include dairy, gluten, soy and eggs so I dont eat any of them. I used to have I.B.S but this has gone since I gave up the foods Im intolerant to. Ive have also cut out sugar and fruit for the past few months. The only foods I eat are veg, brown rice, potatoes, chicken and fish. I have given up all stimulants and I rarely take pain killers. I do take a lot of supplements though which I now reading on the site seems like there a waste of time. Im currently undergoing treatment for my adrenals and thyroid. I am now taking prednisolone(small dose), thyroid and adrenal support which are cell extracts taking from animal which help heal them areas. I was convinced that this was my major problem and I would get well with this treatment unfortunately treatment hasnt been sucessfull and although I had about a week where I felt the best Id felt for over a year and was able to go out of my house even shopping fo an hour it hasn’t lasted and I have now got worse. I got worse when I stopped treatment so I have gone back on it now but I haven’t picked up! Since Ive got worse Ive really stuggled with depression which I used to only struggle with on the occasion. My mum has adrenal and thyroid problems this is why I was convinced it was my problem. Im also very low in cortisol and other adrenal hormones and t3. Since I was younger I have suffered with allergies. Ive always been allergic to something or other, and I was always ill with something too. Since about the age of 15 I started to have less energy, the first year of college was difficult. I also had four operations in the space of 4 years starting with my first one at the age of 13. The last op I had was on my jaw I had an over-bite so I had to have my jaw broke and reset. It was 8 weeks after this that I got a virus and well never got better just got worse. To make things worse now the metal plates that were in the bone of my jaw have come loose and are in my gum so I get a lot of pain with this, I really need another op but Im too ill. To make things worse I feel as if my jaw is moving forward again and I have no idea how Im going to make it to the hospital!!
Since Ive been on the prednisolone Ive have caught virus after virus and have been suffering with a sickness and throat bug for over 9 weeks. Ive also have more joint pain. Can anyone shed any light on this??
Im now looking into doing the MP. Even though it scares me a little Im determined to get well. It upset me first that it takes years however least its aiming to something rather than just having more problems and getting worse. The thing that scares me a little is that with this treatment I have got worse and Im just scared that this too will make me worse. Before I started the treatment I was able to go out once every few weeks although I didnt really enjoy it because it was always a struggle. Then I could also have a walk everyday and do a few tasks around the house during the day.
I seem to feel better at night, does anyone else feel like this too? I still think that the adrenals are a part to play with the illness. They deal with stress so if bacteria has been there for a long time the constant stress on them will cause them to be fatigued.
I really hope and pray that all of you reading this and your family members health returns. My heart goes out to you all. Its difficult to suffer to this extent. xxxxx
Hi Sammy,
I can really identify with you. I was about 18 when my symptoms of CFS started to get bad, and by age 20 they were at their worst. At that point I was completely bedridden, essentially dead to the world, and suffering from (I kid you not) every symptom or condition you have described above. In fact, I was taking the same thyroid and adrenal supplements and probably some of the many supplements you are taking as I had a whole cabinet full of them. The only thing I wasn’t taking was prednisolone.
Anyway, I’m so glad that you have learned about the Marshall Protocol because it is your way out of this horrible disease. Yes, the MP does take time, but what is 3-5 years compared to being sick for the rest of your life? I found that the MP wasn’t much worse than being sick in the first place. My symptoms of bacterial die-off could be strong, but I could generally control them by adjusting the dose of my antibiotics.
The great thing was that my mindset changed. I knew that once on the MP, feeling worse was no longer a sign that I was getting worse and just deteriorating. It meant the opposite. It meant that I was killing the bacteria causing my disease and getting better. So I welcomed extra symptoms for that reason. I was like, “Take that bacteria!” every time I felt worse.
For the first year or so I mainly just experienced immunopathology (symptoms from bacterial die-off), but around a year and a half, I started to feel things ease up a bit. I started to feel more resilient and strong, in a way that can only indicate true recovery, not that fake band aid feeling that supplements temporarily offer.
Now I am three years into the MP and living almost a normal life again. I live with my boyfriend, go out with my friends, work on the computer for at least 8 hours a day, have gone on 3 long vacations in the last few months and have two medial conferences coming up where I know I will travel, present work, and hold up just fine. It’s amazing how different I feel. Everyday I am just so happy because I feel so much better.
So what I’m saying is that the immunopathology can be hard sometimes and maybe a little scary if a symptom flares unexpectedly, but I think just being sick with a terrible disease and not doing anything to target the bacteria at the heart of the illness is a much scarier situation. Right now you are young, and in a few years, you will be planning for the future again if you do the MP.
Anyway, it’s important to understand as much as possible about the MP before starting it. Be sure to read all the information you can about the MP on this site and also on the MP study site:
http://www.marshallprotocol.com.
The MP is part of phase II open-based trials monitored by the FDA. The treatment is run by the non-profit foundation Autoimmunity Research Foundation (ARF). Over 400 medical professionals are members of the MP site. There are thousands of people on the MP, almost all of whom are reporting improvement and/or recovery. Here is a link to the ARF website:
http://www.autoimmunityresearch.org
Also, if you have more questions about the MP (and I’m sure you do!), the following website is the best place to ask them. The patient advocates on the site will answer your questions free of charge and can also help you find an MP doctor. Here’s the link:
http://www.curemyth1.org Th1 refers to diseases caused by bacteria, hence the name Cure My Th1.
Good luck and I really hope to see you on the Marshall Protocol study site in the coming months…
Best,
Amy
Thanks so much for getting back to me Amy. I’ve tried to read a fair bit on the treatment but as you understand to well its hard to take the information in and then remembering its even harder haha! I’ve actually had a fairly good day I have no idea why but Ive had more energy and the depression has subsided. Its so strange how it varies from day to day. I was just wondering if you could explain to me why the adrenals and thyroid are involved. Does the bacteria attack these areas? Did the adrenal and thyroid support make a difference at all to you? Also did you try any other treatments?
I really want to start this treatment. I need time to get more prepared though, in terms of diet, finding a doctor and learning more about the MP. It will be difficult to black out my house not that I mind just because I have to think about my other family members. Howcome when you start the treatment you become more sensitive to light?
I’m so happy that you are almost living a normal life. That is amazing. I bet you feel as if you have been given a second chance in life. Its weird how similar are cases were which fills me even more with joy that you have almost been released from these terrible symptoms!
I have had a just a little more energy today and its felt amazing thats why I am determined to do all it takes to get well.
So did you notice a reduce in your symptoms within in the first year or did you only notice this after 18 months? I suppose when you suffer with immunopathology its the symptoms that you already suffer with that willl get worse as its the bacteria that causes these symptoms.
The only thing that does concern me a little is cutting out light, does this not have any adverse affects on ones health?
Well done on this site by the way, it’s really great that your using your time to reach out to people. Im sorry you had to suffer for so long but Im so pleased that you have brought something good out of it!!
Another thing that confuses me a little is howcome certain people with CFS get better without other treatments. Is there body able to eventually kill off the pathogen?
It would be really great to read your story and I was just wondering where I could read that?
Sorry for asking so many questions, I will ask them on the other site in future. Thanks again for the information and taking the time to help me.
All the best xxxxx
Hi Sammy,
Just want to let you know that I will answer your questions tomorrow. Today I went to see live tapings of the Daily Show and Colbert Report here in New York. It was cool, but I didn’t get time to answer any more questions here on Bacteriality.
Best,
Amy
Hi Sammy,
I’m really glad you had a better day yesterday. I hope today is a good day too, all things considered. Nevertheless, your days can all be good ones if you do the Marshall Protocol.
Yes, I definitely understand how much information there is to absorb about the MP. It’s based on 20 years of solid molecular modeling research that has now been combined with a large body of clinical data. I know it’s hard to accept that the Marshall Protocol turns a lot of what mainstream doctors are saying these days on its head. Yet if you think about it, mainstream doctors have no solution to offer for chronic disease. That’s because they are on the wrong track. In an effort to find genes that cause particular diseases, they have completely overlooked their actual microbial causes.
Anyway, I just put up a video today that explains the basics of the MP. I really hope you listen to it as I think it will walk you through the main topics you really need to understand in order to grasp the science that forms the backbone of the MP and the basics of the treatment itself. Here’s the link:
http://bacteriality.com/2008/05/07/mpintro/
The reason that essentially all hormonal pathways (including those that regulate the thyroid, adrenal glands sex hormones etc) become dysregulated in people with chronic disease has to do with the ability of the chronic biofilm and L-form bacteria that cause chronic disease (collectively referred to as the Th1 pathogens) to create substances that bind and block the vitamin D receptor.
The vitamin D receptor is a fundamental receptor of the body that controls the activity of the innate immune system. It also controls the activity of several enzymes that keep the level of the active vitamin D metabolite - called 1,25-D- in the correct range.
So when the receptor is blocked by bacterial substances, the enzymes don’t work and 1,25-D begins to rise to an unnaturally high level. The more bacteria one acquires, the higher 1,25-D goes up.
Unfortunately, at high levels, 1,25-D bind receptors called the nuclear receptors that essentially control all our body’s hormones. 1,25-D displaced the metabolites that are supposed to be in these receptors, the ones that are supposed to correctly activate or thyroid, adrenal glands etc. So those pathways crash and stop functioning.
The complicated version of the science described above can be found in the following peer reviewed paper by Dr. Marshall. Your doctor may want to see it:
http://TrevorMarshall.com/BioEssays-Feb08-Marshall-Preprint.pdf
When I took thyroid and adrenal supplements they did essentially nothing as far as I could tell. If they did help in any way, it was just by temporarily covering up the problem, not by actually killing the bacteria causing the issue in the first place.
I did almost every possible treatment for CFS. Dr. Teitelbaum’s entire regimen, heparin injections, colloidal silver IVs, tons of supplements, kutapressin, almost everything out there. Sometimes I would have periods where I felt a little bit better, but inevitably I would always crash. I now realize that any supplement that made me feel temporarily better was only usually slowing the activity of my immune system. That caused less of my bacteria to die, and since it is the death of the Th1 pathogens that really causes a rise in symptoms, I would feel a little bit better but it never lasted. The prednisolone you are taking, which slows the immune system, is definitely working in that manner.
Light sensitivity during the first years on the MP has to do with the fact that people with chronic disease have a severely dysregulated vitamin D metabolism. This piece describes light sensitivity in greater detail:
http://bacteriality.com/2008/02/23/misconceptions/#8
During the first 18 months on the MP, my die-off was strong and kept me from really being able to feel the improvement I was making “under” the die-off due to the fact that my bacterial load was decreasing. But after that time, I did note improvement, and the die-off became easier to tolerate. I don’t know if you will follow the same pattern as me, as everyone who starts the MP is different, But if you do the treatment, you do have to be willing to feel worse before you feel better, at least for a time.
The idea that CFS will go away on its own is a myth. I find people who claim to have recovered from the disease are usually just trying to sell you something. Or some people are taking so many drugs that they say they are better yet still can’t exercise and they crash and burn later because they are taking an immunosuppresant. Since starting this website and working with the MP I have never once heard from an actual person who has reported truly recovering (we’re talking no medicines anymore, capable of running a marathon) from CFS on their own. I have only known people to recover thanks to the MP. This article describes the difference between how the MP will cure you disease vs. other treatments for CFS:
http://bacteriality.com/2008/02/23/misconceptions/#14
I don’t have my story written right now, but that is one of my projects. But our cases are extremely similar.
That’s why I truly hope that you do start to post on http://www.curemyth1.org where you can work with the moderators to really get the ball rolling and start the MP.
Good luck!
Amy
Thanks again for the information Amy. Its all starting to make so much sense to me now. I’ve been looking on the forum and its just amazing to see how its working for all these people. Its good not just having a doctor teling you this will work but actually witnessing people get better through the forum.
I live in England and I have never heard of this or anyone doing this treatment before. I just stumbled across it. My friends will probably think Im crazy lol! Over here there isn’t really much treatment offered on the national health service. The treatment I got was aiming manage my energy and pacing, it was just rubbish and I just got worse. I was quite naive and I hoped that I would just get better in time! The national health service doesn’t really even know about candida or food intolerances. I’m glad I had private tests done to show how many things were going wrong in my body because it made me realise how serious what I’m suffering with is. In a way the MP makes me feel relieved even though I appreciate the first few years are going to be very tough. However I was here trying to combat all these areas in my body going wrong and it felt impossible!
I have trouble with reading out loud, spelling and pronouncing words now where this was never a problem before. Infact at school I was always the one in class who wanted to read out loud lol! I have noticed one thing though that my fungal toe nails have started growing out since I stopped eating sugar and started treating my candida. Thats not really anything though considering all the symptoms I suffer with. No one ever sees my feet anyway lol!
I understand about what you are saying with people not returning to full health, my nutritionist also had C.F.S and says she is well but she still has food intolerances which makes me wonder is she really well. I think its hard to know what a 100% is when you have been ill for so long. I know so many people with C.F.S who end up relapsing too. This was also one of my fears that all through my life I would get a little better but then crash. How disheartening is that!
Im wondering whether to start the MP soon as possible or wait till august as just has just started here. Either way its going to take me a while to find a doctor and study the whole thing so I know as much as I can possibly remember. I’ve looked on the website so much I feel like I’m going into information overload lol! I have noticed some difference with supplements but nothing major and I’ve also had side effects to put up with from the prednisolone even though I’m only on a small dose. My mum has a thyroid problem and high blood pressure and she herself is thinking about starting the treatment.
Anyway I look forward to reading your story when you have written it. I will maybe even notice even more similarity!
Take care and thanks again xxxxx
P.S my mum has joined the forum and posted a message for a list of doctors
xxx
Last paragraph I ment the summer is just starting here, you cant tell my brain it tired!! xxx
Hi Sammy,
It really makes me happy to hear that the MP is coming together for you. In a sense I started this website with someone like you in mind. I thought of myself before I found the MP and how I endured so much suffering before starting the treatment. So it makes me feel good that someone my age, who is hurting the way I was, can read some of my pieces, learn more about the MP, and do it also.
There are already a good deal of people on the MP in the UK although you will probably be the only one of your friends who knows about the MP. At first maybe my friends thought I was a little nuts, but as I explained the treatment to them and then started to feel better, I think most came ’round. In fact, I get a lot of requests from friends today asking about how their parents or other friends can do the MP.
I’m so glad your Mom is also considering doing the MP. Way to go by requesting the doctors list already!
I wish you both the best!
Amy
Hey Amy, sorry to ask another question but I have read that the MP only works for certain people with C.F.S. Do you think this is true or is there evidence to show it will work for all people with C.F.S. I dont mind doing the treatment I’ll do anything but I’m just scared I’m one of the unlucky people it won’t work for.
Also do you have to live in complete darkness. I can’t quite work this out even from what I’ve read. How do you see what your doing if its pitch black?
Thanks again for all your help xxxxxxxx
Hi Sammy,
Err..where did you hear that the MP doesn’t work for everyone? The treatment currently has an 100% response rate. What that means is that essentially everyone to start the MP experiences bacterial die-off reactions, which of course mean that bacteria are being killed and that eventual recovery is on the horizon.
Some people cannot twist their minds around the concept of immunopathology - or the fact that bacterial die-off will cause you to get worse before you get better. These people (often with CFS) have been know to quit the treatment and say it wasn’t working for them. Of course the MP was working, and quite well - they just didn’t understand that a rise in symptoms is supposed to occur, particularly during the first months. Such people usually end up on other message boards. They don’t understand the MP science and can mislead people like you who need to understand it accurately. So if you have a question about disease recovery rates, I recommend asking people on the MP or the patient advocates at http://www.curemyth1.org.
I am quite confident that the MP will work for you as your symptoms are incredibly indicative of bacterial infection. You could get your D metabolites tested and see if you have a dysregulated D ratio if that will make you feel more confident that the treatment will work for you. But the easiest thing to do is just start if. If you experience immunopathology then it is definitely working!
About avoiding light. No, no, you don’t totally have to avoid light. People who are very light sensitive usually have to dim the lights in their houses or switch to lower WATT bulbs but they can still totally see. I think you will be surprised that outside, even with your dark sunglasses on, everything will look quite bright. And over time light sensitivity gets better, so you can tolerate more and more stronger lights.
Have you filled out a patient form on http://www.curemyth1.org? Make sure you do that now. I was told this morning that the study site is actually closed to new members because of an overload of patients who want to do the treatment.
I think that new patients will still be allowed to start the MP and post on the site but will have to fill out a form first and may have to wait until a space opens up before they can start. So make sure you alert the moderators on http://www.curemyth1.org now that you are interested in the MP. Tell them you have been talking about it with me for several days and have already requested the doctors list. That should help you get admitted to the study as soon as possible.
Not to alarm you there, I just want you to be able to start the MP right away if you decide to do so. Or at least get in the first slots on a waiting list if there is one now. Also, make sure your Mom does the right thing.
Best,
Amy
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