19 Nov 2007
While alone in a foreign country, this mom from Houston Texas began to suffer from an array of debilitating symptoms. Soon, she was diagnosed with sarcoidosis. Despite the fact that she had to care for three young children, she successfully started Autoimmunity Research Foundation’s Marshall Protocol and today, about two years later, is active once again. Meet Lisa Shanahan.

It all happened very suddenly. Before becoming symptomatic, I considered myself very healthy. I was even preparing to run my second half marathon after completing two full marathons. My husband and I had decided to adopt a baby from Guatemala. We went down to Guatemala to see our son for the very first time. The next morning I woke up and my face was swollen. I didn’t know what to make of it. At the same time, two large lumps appeared on my arm, at my inner elbow area. Upon returning to the US that next week, I saw two different doctors that informed me that I had allergies and not to worry, so I went on with my usual routine. They gave me a small steroid dose pack to decrease the swelling.
A few weeks later I returned to Guatemala in order to finish the process of adopting our son. Since the process takes time, I chose to go live in Guatemala with my twin daughters, who at the time were 3 1/2 years old, so we could have our son live with us instead of in foster care. During that time I was completely on my own. I started to become more symptomatic. My face began to swell again, especially around the area of the parotid gland (near the jowels). Then, I started to have problems with my eyes My vision became fuzzy and I saw what seemed like blind spots. The loss of my vision was very scary. “What is wrong with me?” I thought. I saw three different doctors in Guatemala, none of whom could give me an answer.
One day I walked right off the street into a doctor’s office and asked him to take a biopsy of one of the lumps on my arm. I got the results of the biopsy, but since they were in Spanish and my doctor was on vacation it could not be translated, so I just stuck the papers in my suitcase. When I finally signed the adoption papers I could barely see. By then, not only was my vision affected, but my eyes felt extremely painful, hot, and swollen. I went straight from the embassy where I signed the papers to an eye doctor in Guatemala City. He diagnosed me with uveitus and explained the disease. He gave me a steroid eye drop and sent me home. Soon after that my kids and I went back home to the US.
Immediately upon our return to the US I saw several doctors. The nurse at the first office translated the results of the biopsy that had been taken in Guatemala. The verdict: sarcoidosis. But my doctor refused to accept the results of a biopsy performed in Guatemala and insisted that the procedure be repeated. Two weeks later the results from the new biopsy came back with the same diagnosis. I was also re-diagnosed with the eye disease uveitis by another Opthamologist who explained that uveitis is common in sarcoidosis patients (I now realize that is because both diseases are the result of infection by L-form bacteria).
Sarcoidosis sounded like a death threat (and was, because it’s a deadly disease.) I couldn’t even read or spell the word sarcoidosis, yet I couldn’t look it up online because I still could barely see. My only source of“relief” was that the disease was not in my lungs. I was informed that the kind of sarcoidosis I had ( called Hedfort Syndrome) often doesn’t end up affecting the lungs, at least for a long time.
My doctors performed test after test. I went to over 50 doctor appointments that first year. Finally, they informed me that there was basically nothing I could do to get better, and that I would probably never recover. Maybe I would go into spontaneous remission (which I now realize does NOT happen), and even so, my parotid glands could be swollen for the rest of my life. They did put me on the corticosteroid medication prednisone, as well as the medication methotrexate, and more steroid eye drops. The temporary immune suppression from the steroid eye drops and the prednisone made my symptoms improve for short periods of time but the uveitis would always come back as I tried to wean off the eye drops. The only way I could make it go away again was to resume steroid eye drops - something that I really didn’t want to do.
A friend of mine knew about the MP and sent me an email about the treatment. Meg Mangin, one of the nurse moderators also knew my friend. So, though this grapevine I was able to get Meg’s number and talk to her on the phone about the MP. Her insights were very encouraging and she referred me to the MP website where I could read and learn more about the details of the treatment.
To be honest, when I sat down and read about exactly what the MP entailed, I literally started to cry. I had no idea how I would be able to manage my immunopathology and correctly adhere to the light restrictions when I had to take care of three young children. The MP guidelines also state that patients must stop taking all supplements but I was a heavy supplement user. In fact, it’s my livelihood - I am an independent distributor for a health and nutrition company. I really thought that if I started the MP I would never make it. But the only other option was to stay on steroids, and I knew that either the steroids or the illness would eventually kill me.
I pulled myself together and decided that I would just have to make the MP work, not only for me, but for my family. I figured that if I didn’t try it, I would never know whether or not it was possible to succeed. I stopped all my supplements and I also totally weaned off all my medications except for a few eye drops. Everything that the MP guidelines said to do, I did perfectly. My doctor wouldn’t put me on the MP so I said, “you’re fired!” and proceeded to find one who would.
I wrote a letter to all my family and friends basically telling them that I was entering a state of hybernation and quitting my activities. I was very serious about outlining how the antibiotics might affect me and cause my symptoms to flare. But I also included the best-case scenario for how taking these measure would help me – I would slowly come back to life and then become completely better.
At about 6 months into the treatment I realized that perhaps the hybernation wasn’t completely necessary and that I should try to re-enter life. I found that I could hold up just fine. Of course, there were occasional setbacks, especially if I got too much sun. One time a graunloma appeared on my eye, but I knew it was just a result of my immunopatholgy and, as expected, it went away.
One thing really surprised me – after starting the MP I never had signs of uveitis again. My inflammation went away, my vision cleared up immediately. I was able to wean off all my steroid eye drops. At the moment I only use up to one eye drop a day. But it’s not a steroid drop and I only need it on days that I am exposed to a lot of sun or bright lights.
About a 1 1/2 years into the treatment I was able to start wearing contact lenses again – something I had been unable to do since I developed my sarcoidosis symptoms. It was great! I was able to wear the smaller more stylish NoIRs (sunglasses).
After emerging from hybernation I decided that I was going to try to live as normal a life as possible while still on the MP. So I get a reasonable amount of sunlight which sometimes flares my symptoms. After all, I live in sunny Houston Texas. So it’s hard to tell exactly how recovered I am – probably around 80%? I lead a pretty normal life and know that I am on my way to a full recovery.
The face swelling and lumps have completely disappeared, and as I said the before, uveitis is no longer an issue. Mentally, I’m a totally different person then I was 3 ½ years ago. I joke that I’m the cheapest date ever because no matter what I do I have a blast. After conquering my illness, every other source of worry seems pretty trivial. If I’m running behind schedule I just think, “well, if I’m late, I’m late.”
I’m always running around and doing activities with my kids – I watch them play sports, I take them everywhere. All my kids celebrated birthdays in July and we had wonderful indoor roller-skating and ice-skating parties. During my first year on the MP, we actually had the kid’s birthday party at an outdoor Cowboy Ranch that had a nice covered riding area. Recently, I was taking a Spanish class twice a week since one of my life goals is to be fluent in Spanish and I had to put it on hold while I was sick. Most importantly we have started going back to church as a family and we have started going to Sunday school classes. I just wear a hat in church and ask them to dim the lights in the Sunday school class. I’ve also started to work more again, I work about 10 hours a week at home, right around my family!
We moved to a more wooded area to support my new lifestyle. With all the tree shade I am able to do almost EVERYTHING! I just bought new bikes for me and the whole family, so that we can bike through the forest near out house. I go on walk/runs every day alone or with the kids. I’ve also started doing yoga again which makes me feel good both physically and mentally. I’m even lifting light weights at the gym on a regular basis.
Looking back, I realize that all my life I’m been sensitive to sunlight. I was a heavy sunglass wearer. When I started the MP the light sensitivity increased, to the point where I even had to change the lighting throughout the house and in my garage by putting in lower watt bulbs. But it’s gotten better. At this point very bright fluorescent lights still bother me and when I’m in the bright sun I still wear sunglasses. As far as clothes go, in the sun I can get away with wearing longer pants, a light shirt over my t-shirts and a cute little hat. I go outside when it’s sunny as long as there is a covering or shelter that I can stand under. I think that the heat from the sun actually flares my symptoms more than the light itself (heat from the sun also causes vitamin D production in the skin).
As I stated before, we recently moved to a very wooded area so that it’s easier for me to go outside during the day. There are many shady wooded parks by our house where I can take the kids. In many ways, I am a different person during the winter and during the summer. During the winter, I don’t turn down any sort of activity. In the summer I am more careful about my plans because of the light.
My doctor is pleased about my progress. He believed the MP would work from the beginning! He lets me lead the way, as far as making changes in my meds or adding a bit of sun or trying something new, but gives tons of great advice when necessary. He is the person who most encourages me when I need it.
As mothers, we do so much for our children. We are essentially advocates for them – if something were to happen to them we would pursue the issue over and over again looking for a solution. But often, for some reason, we don’t act this same way when it comes to ourselves. But it’s important to realize that you can only be the best parent you can be if you are as healthy as possible. So you need to become an advocate for yourself. Do whatever you can to get better because you need to be there for your children. If doctors say they can’t help you then keep looking, don’t stop. If you can’t find an MP doctor in your area then drive a long distance to reach one or even fly to their office. Getting your health back is that important. I have to drive over an hour each way to visit my MP doctor but it’s worth it. As a matter of fact, I have put him in charge of the health of all three of my kids, so I am putting a lot of miles on the car to see him.
When it comes to the MP, you are in charge of your own health and you can make it work. When I started the MP I paid one of the school teachers to drive my kids to school, I did not know her well, but had faith that it was the best decision. I went from being an overprotective Mom to someone who had to put faith in a person I didn’t know. I found the driver by calling our school, explaining my situation, and asking for help. And if I hadn’t been able to find someone to drive the kids, I would have pulled them out of school until I got well enough to drive them again. Staying on prednisone and wasting away was just not an option. Eventually I also hired a nanny to help out around the house.
Of course there were times when it was tough because I couldn’t participate in family activities. At first, I had to watch my husband take the kids to the zoo while I stayed at home. But then we got creative and thought up activities where I could participate. For example, we set up our tent in the backyard and went “camping.” We even made a big fire pit where we could roast marshmallows. It was fun! We did the best with whatever we had. There are lots of indoor things to do if you just look around and plan well.
I was honest. I said, “Mommy is sick, but she is going to get better.” It was easy. They accepted any changes that had to be made. They just wanted me to get better.
I wouldn’t say I was ever skeptical about the MP but sometimes I had doubts, – particularly about how long the treatment would take. When I attended the conference I met so many other people, many of them who had been much sicker than me and were leading normal lives again. From that point on, I was confident that I could recover at the pace that I had mapped out when I started the treatment – basically seeing improvement every six months and feeling normal again around the 3-year mark. So far, I’m right on track.
I also attended the conference six months into the MP, right around the time when I was thinking about emerging from my state of hybernation. At the conference, I saw that many people experiencing immunopathology were still leading fairly normal lives. I saw that others were able to adapt the guidelines to suit their own lifestyles.
This helped me realize that it was ok to experiment. If I pushed myself too hard it wasn’t going to kill me. I needed to explore what level of activity I could tolerate while on the MP, not just assume that I couldn’t do anything. I realized that I was the only one who could figure out what I was capable of handling so it was ok to test myself.
Many people have asked me that. My answer is that I’ll never know. It’s possible that I am where I am today because I took such extreme measures at the start. But I tend to think that I probably didn’t have to be so hard on myself.
I want to run again, definitely 5K and 10K races, maybe one more marathon, but most importantly I want to run races with my children. I want to be physically fit with them. I’m already getting there. We just signed up for our first Jingle Bell Family Walk! It is 2 or 3 miles and since it is during a cooler time of year (December), I should be fine as long as I wear my hat NoIRs and long sleeves!
I’d also like to go on an annual beach vacations with my family and not have to worry about the sun. Not that I would seek the sun, but I look forward to reaching the point where I don’t have to cover up as much. I also want to raise my kids to realize what I have learned - that they are in charge of their own health and happiness and need to take action on their own if something happens. But when it comes down to it, I just want to lead a normal life with my family. Happily, I am almost there.
55 Responses for "Interview with Leesa Shanahan - Sarcoidosis (Hedfort Syndrome), Uveitis"
What is the Marshall Protocal and how do you get started on it? This story is very encouaraging. My dear friend has just been diagnosed with sarcoidosis in her lungs. She has no symptoms, but the doctor put her on a small dose of prednisone because she had an abnormal liver count. Please let me know asap how to get going on the MP.
Thanks,
Roberta
Hi Roberta,
I’m sorry to hear your friend has been diagnosed with sarcoidosis but the Marshall Protocol will give her back her health.
First, you may want to read more of the information on this site (Bacteriality), particularly:
“About the Marshall Protocol:
http://bacteriality.com/about-the-mp/
There are also several more interview with people who had sarcoidosis (in the lungs) and are also reporting recovery.
Then, I recommend you read as much information as possible on the Marshall Protocol study site, particularly the information in the following forum called “Essential Information about the MP”
http://www.marshallprotocol.com/forum2/
I know this may seem a little overwhelming so I highly encourage you to post at the website http://www.curemyth1.org (Th1 is the name given to diseases caused by L-form bacteria, hence the name Cure My Th1)
You can post any questions you have about the Marshall Protocol on that site and they will be answered free of change by experienced patient advocates. They can help guide you through the process of helping your friend understand and start the treatment.
Best,
Amy
i know you can get through it they said someone that i care about alot has scardosis but i know its not true i pray for people everyday with cancer or dieases like this one it is very bad that people have to suffer from cancer and diease cause of what they did in there past time ohh and do you stiil have the diease or did it go away if it did go away can you email me to tell me if you got this message im only 10 but us kids can make a diffence in this world by making new a medicine or finding medicine that these dumd doctors will never be able to find there is a cure email me at jmase001@yahoo.com hang in there
Hi Jasmine,
It is very sad that so many people are suffering from different forms of chronic disease but the difference is that now a treatment exists which will allow them to get better.
The reason somebody gets sick has nothing to do with what they did in the past - what happened is that they accumulated a lot of bacteria and it is the BACTERIA that makes them feel so terrible.
This site talks about a treatment called the Marshall Protocol which allows people to kill that bacteria and become healthy agaain.
You can definitely make a difference in the world and I am glad that you have taken an interest in disease and how to help people who are sick. If you have been told of a family member that has sarcoidosis try to find out exactly who it is and refer him/her to this website so they can learn about the Marshall Protocol.
Best,
Amy
My aunty is suffering from sarcoidosis , Doctor after diagnsis saying that she at last stage.slava stopped, eye are not clear and alos infected the head and brain. Please let me know asap how to get going on the MP. I am india ,Is any hospital or branch for MP.
Please give the detail and how to go about MP treatment
Awating for the reply. you are my god now.
thanks and regards
sathishkumar
Hi sathiskumarselvaraj,
I’m so sorry to hear about your Aunty, but she will get better if she does the Marshall Protocol. It is now understood that sarcoidosis is a bacterial illness and the Marshall Protocol will allow her to kill the bacteria making her sick.
To start off, you may want to read the following article:
“About the Marshall Protocol”
http://bacteriality.com/about-the-mp/
Secondly, you should read as much information as you can at the Marshall Protocol study site. This is a good forum to start which talks about what the MP is, how to get started etc. There is no charge to use the board as it is run by a non-profit agency.
http://www.marshallprotocol.com/forum2/
Finally, I urge you to post at the following website - http://www.curemyTh1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th1)
On that site are experienced patient advocates who will guide you through the process of finding an MP doctor in India and will also answer any other questions you have. They are volunteers and the advice comes free of charge.
Best of luck!
Amy
COULD YOU PLEASE SEND ME INFORMATION ON THE PROGRAM YOU WERE ON. I HAVE SARCOIDOSIS IN MY LUNGS, AND I AM AT STAGE 3. THE SARCOID IS STARTING TO EFFECT MY EYES. THE DOCTORS TELL ME THAT THE ONLY THING THAT CAN HELP ME IS PREDNISONE. I DONT BELIEVE THAT, THERE MUST BE SOMETHING THAT CAN HELP ME. PLEASE HELP ME, I AM AT MY LAST STRAW.ANY INFORMATION WOULD BE GREATELY APPRECIATED. LISA GLINSKY
Hi Lisa,
This is Amy, and I run this website. I am sorry to hear about the progression of your diseases but you are in the right place. Sarcoidosis is caused by mutated bacteria that are able to live inside the cells of the immune system. The Marshall Protocol, the treatment Lisa is on, will allow you to kill those bacteria and get your health back.
It may take Leesa a while to read you post, so I will guide you as much as I can in the meantime.
First I would suggest reading the following piece:
“About the Marshall Protocol”
http://bacteriality.com/about-the-mp/
Then you should read as much information as you can at the Marshall Protocol study site - a site run by a non-profit organization called Autoimmunity Research Foundation which created the Marshall Protocol.
Start in this forum which discusses how to get started on the treatment, what medications you will be taking, how to find a doctor, what blood tests should be done before starting the treatment etc.
http://www.marshallprotocol.com/forum2/
Finally, and most importantly, you should post of the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th1)
Post all your questions/concerns about the Marshall Protocol on that site and they will be answered free of charged by experienced patient advocates who will guide you thorough the entire process of learning about and starting the treatment.
Best,
Amy
FOR THE LAST 10 MONTHS I HAVE SEARCHED, TRYING TO FIND ANSWERS TO THIS LUNG PROBLEM THAT THERE IS NO CURE FOR, AND TO TELL YOU THE TRUTH , I WAS READY TO LAY DOWN AND DIE , TIL I READ YOUR WEB PAGE, MY HUSBAND, KIDS AND GRANDKIDS ALL LOOK AT ME AS IF THERES NO HOPE. SO GOD MUST HAVE SENT ME TO THIS PAGE, TELL ME WHAT IS MP, WHAT IS HYBERNATION. THIS DISESE HAS AFFECTED MY JOINTS, LEFT EYE,AND ALL MY X-RAYS READ THE SAME IT IS NOT MOVING, BUT CAUSING OTHER PROBLEMS THROUGHT MY BODY.THANK YOU FOR POSTING THIS SITE, GOD BLESS YOU FOREVER.
Hi Yvonne,
This is Amy - I write the articles on the site and conduct the interviews. I am also so glad that you have found the MP! It was also a joyous moment for me when I learned about the treatment and since that point it has turned my life around.
Don’t forget that if you have any questions about the Marshall Protocol you can post them at the following website http://www.curemyth1.org (stands for Cure My Th1) and they will be answered free of change by experienced patient advocates.
It is also a good idea to begin reading as much information as possible about the Marshall Protocol at the study site:
http://www.marshallprotocol.com
Good luck!
Amy
hello amy. II was told i had sarcoidosis 4yrs ago in my lymphnoids they did a biopsy and it was b9 but not active and syptom free little did i know that with in a 1yr period it whould turn my life completly around whith horrible symptoms of fatigue joint pain fevers reactive to cold and an all over generall unwell feeling just recently got out of the hospital for the pain causes my blood preasure to go up and iam know suffering from taccardia because of mine usaly flairs uponce time a month for 7 days
Hi Sherry,
I’m so sorry to hear about the progression of your illness. Sarcoidosis is a very serious illness and I recommend you take action immediately and begin to kill the bacteria making you sick.
Sarcoidosis is caused by various species of L-form bacteria - bacteria that have mutated from classical forms of bacteria, lost their cell walls, and are able to hide undetected inside the cells of the immune system that are supposed to kill them. Read more about them here:
http://bacteriality.com/2007/08/15/l-forms/
L-form bacteria (there are many species) cause a range of symptoms including tachycardia, so these same pathogens are also causing your recent heat symptoms. Leesa is killing her L-form bacteria by using the Marshall Protocol and so should you. Here is a description of how the Marshall Protocol medications work to effectively target these pathogens.
http://bacteriality.com/2007/10/11/antibiotics/
And here is a shorter piece describing what the treatment entails: http://bacteriality.com/about-the-mp/
To date there is no other treatment besides the Marshall Protocol that effectively kills L-form bacteria so I encourage you to start reading about it as much as possible. Take a look at the study site which is run by the non-profit agency Autoimmunity Research Foundation. This forum is a good place to start:
http://www.marshallprotocol.com/forum2/
If you have any questions about the treatment or how to proceed from here post them at the following website:
http://www.curemyth1.org (Th1 stands for diseases caused by L-form bacteria, hence the name Cure My Th1). Your questions will be answered free of charge by experienced patient advocates.
I recommend you take action now before your bacteria spread any further. The Marshall Protocol is a curative treatment and if you stick with it, you will get your health back.
Best,
Amy
HELLO AMY thank you for the info. Iam going to print it out to take to the dr mon .Id like to know if you had any kind of side effectects from the marsal protacol? it is so nice to talk about it with someone who knows how bad it can feel you have given hope that at least there is some kind of treatment, alot of the drs have no glue as to what it is. at 1st I didnt even know how to proonounce the diease. AT the pulmonary spec, just made it seem that was nothing to worry about. i would have been more prepared for the symptoms had she bothered to tell me both sideslets just hope that more reach search continues on this d iase and all others we need more research done on all these horrrible diasese. take care of yourself and keep it touch sherry
Hi Sherry,
I am so glad you are going to present info about the MP to your doctor. It is the first step in a path that will lead you to recovery. Among most doctors, sarcoidosis is a very misunderstood disease and because the doctors don’t even understand the cause or severity of the illness, few patients actually understand what they are dealing with when they are diagnosed. Doctors who fail to grasp that sarcoidosis has a bacterial cause often tell patients that it’s not a big deal which is absolutely incorrect. If left untreated it’s a deadly disease.
About side effects - no, I have not had any side effects that I am aware of from the MP medications. Benicar has an excellent safety profile and has only helped me manage my symptoms and inflammation. The first posts in this thread offer more information on the safety of Benicar:
http://www.marshallprotocol.com/forum2/11.html
The antibiotics also have few, if any side effects and I have never felt anything after taking them except the immunopathology (bacterial die-off reaction) that is supposed to occur. I think almost everyone else on the MP would tell you the same thing.
Good luck at you upcoming Dr. appointment!
Amy
Hi
i have scardosis and sickle cell which is very tricky, i am on pred, but every now and then the symptoms flare up causing me pain and losing weight dramatically,these have also effects my liver function, basically my whole life.
any take on how help myself in the future without all this pain
Hi Maria,
Yes, I can certainly see how it must be hard to manage both sickle cell and sarcoidosis. Sickle cell is a genetic disease, but recent research has confirmed that sarcoidosis is a bacterial illness. So you CAN treat your sarcoidosis which will provide you with substantial relief. The bacteria that cause sarcoidosis are called L-form bacteria. They are able to hide undetected inside the cells of the immune system where they cannot be killed by standard antibiotic therapies. Read more about L-form bacteria here:
http://bacteriality.com/2007/08/15/l-forms/
However, you can use the Marshall Protocol, a treatment described in greater depth on this site, to kill the L-form bacteria causing your sarcoidosis. Here is a brief description of the treatment:
http://bacteriality.com/about-the-mp/
This piece describes how the Marshall Protocol medicines work in greater detail.
http://bacteriality.com/2007/10/11/antibiotics/
In order to start the Marshall Protocol you will need to wean off your prednisone. Since prednisone slows the immune system your immune system will not have the strength to kill L-form bacteria unless you wean off the drug. Many people have successfully weaned off prednisone and started the MP. You can be one of them. If you decide to start the treatment the moderators on the Marshall Protocol study site will guide you on how to wean off prednisone correctly. Since the Marshall Protocol is run by a non-profit foundation there is no charge for their guidance or for any other aspect of the treatment.
In order to understand the basics of the Marshall Protocol I also recommend that you read as much information as possible on the Marshall Protocol study site. This forum is a good place to start:
http://www.marshallprotocol.com/forum2/
Finally, if you have any questions about how to start the treatment, how to find a doctor, or any other concerns post them at the following website:
http://www.curemyth1.org (Th1 refers to disease caused by L-form bacteria, hence the name Cure My Th1). Your questions will be answered free of charge by experienced patient advocates.
You will get you health back (sickle cell aside) if you do the Marshall Protocol so I highly encourage you to look into it as soon as possible!
Best,
Amy
Hi Amy,
Thank you for putting up this website. I was diagnosed with rheumatoid arthritis at age 15 (I am 29 now). I quit the steroid drugs at 18, but it has been a rollercoaster ride of debilitating pain, depression, psychosis, and deformation in nearly all of my joints. I recently started taking vitamin d at 4800 iu per day, but after a week or so I felt a nudge to look into vitamin d and I found your website. I would like to start the MP as soon as possible, but my third babe is only seven weeks old and I plan to breastfeed for two years. I wish the MP would have been around when I was first diagnosed, it has been challenging to say the least to have RA and care for 3 children. Leesa’s story is encouraging. Anyhow, thank you again. I finally feel a sense of hope that I can recover.
Emily
Hi Emily,
Thanks for your kind remarks about this site and I’m so glad you are now aware of the Marshall Protocol! Congratulations on your third child. I know you are not feeling well, but it still must be wonderful to have a new baby. I also understand that it must be very difficult to take care of three children when you are sick, but you seem to be managing which makes me think you definitely have the strength and persistence to succeed on the MP.
I understand your desire to breastfeed your baby, and I hope you will start the MP when that period is over. In the meantime you can start avoiding vitamin D from your diet and staying out of excessive sunlight, which allow your immune system to function most effectively during the time before you start the MP. At least you know not to give your baby pre-natal vitamins with D!
Good luck and I hope to see you on the MP site in the years to come!
Amy
Im so pleased that I have found this site. My dad has been diagnosed with sarcoidosis. It began last July with a swollen eye. They found a mass on his optic nerve. The pain he was in was horrific. They stablized it with steroids and he’s still on them at low doses. The drs and hospital say that there is no treatment. He has recently had a numbness in his left leg too. He has angina and diabeties as well as high blood pressure. Would MP work for him.
Hi Jenn,
The answer is absolutely! I’m so sorry to hear about the pain your Dad has experienced lately, but he has a curable disease.
It is very common for doctors to tell patients that there is no cure for sarcoidosis. That’s because they fail to realize that sarcoidosis is a bacterial disease and can be treated with the low-dose antibiotics and the immune enhancing drug (Benicar) used by the MP.
You can read more about L-form bacteria here:
http://bacteriality.com/2007/08/15/l-forms/
A short summary of the Marshall Protocol is here:
http://bacteriality.com/about-the-mp/
A a description of how the MP medicines work in greater depth is here.
http://bacteriality.com/2007/10/11/antibiotics/
As you may be able to tell based on your Dad’s symptoms, the diseases caused by L-form bacteria are systemic, meaning that a person seldom has symptoms in only one area of the body (such is the nature of most infections). So your Dad’s numbness , heart/blood pressure issues, and diabetes are also the result of L-form infection and can be treated with the MP as well.
In a few days I will be putting up an article about the Marshall Protocol and cardiovascular disease. So check back on the site soon if you are interested in reading that piece. In the meantime, this interview tells the story of one of the many MP patients who has found that after some time on the MP, their heart condition has improved/gone away.
http://bacteriality.com/2008/01/18/interview15/
At this point,
what I think you need to do is find a doctor who will work with your Dad in order to put him on the MP. You could either take information about the MP to his current doctor and convince him to give the treatment a chance, or you could find a new doctor in your area that already uses the MP. You can request a list of MP doctors in your area from the Marshall Protocol study site at this link:
http://www.marshallprotocol.com/forum11/9355.html
I also recommend posting about your Dad’s situation at 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 help guide you further on how to find a doctor who will work with your Dad and address any other questions you have about the MP. There is no charge for their advice, or to do the Marshall Protocol, as the treatment is run by a non-profit agency and all are welcome to participate.
Best,
Amy
HI, I just wanted to comment on your letter. As a person who is currently in the process of being diagnosed wit Sarcoidosis in my lungs I was very upset by one of your comments. Your only source of “relief” was that it was not in your lungs. I feel this is an irresponsible statement to make when you are trying to help others with this disease. I am trying to stay positive and deal with the information I am being given by my doctor, who is very positive about my potential diagnosis. Please consider changing you words, possibly to other organs in the body, To give those who have been diagnosed with Sarcoidosis in their lungs a more positive outlook. Thank you, Maggie
Hi Maggie,
It’s not easy to talk about what it feels like to come down with an illness like sarcoidosis but Leesa did her best, and as the person who interviewed her. I am 100% sure she did not mean to alarm anyone with sarcoidosis of the lungs. Her comment is merely a reflection of how she felt at the time and has relevance to her story.
Please don’t take that remark the wrong way as Lisa is an extremely kind person who has helped guide many people toward recovering from sarcoidosis. Instead of focusing on that comment I encourage you to focus on the way Lisa recovered from her sarcoidosis - by using the Marshall Protocol.
Here is a short description of the treatment:
http://bacteriality.com/about-the-mp/
Here is a description of how the medicines work in greater detail:
http://bacteriality.com/2007/10/11/antibiotics/
I have to level with you. It’s good to have a postitive doctor but sarcoidosis is NOT a disease that will go away on its own and people with sarcoidosis don’t go into spontaneous remission.
It is now becoming increasingly understood that sarcoidosis is a bacterial illness. The research showing that it is a bacterial illness is very new and your doctor will probably not know about this research. He also may not agree with it simply because it was not something he/she was taught in med school.
So before making a decision about how you will treat your disease, I urge you to speak with any of the hundreds of people with sarcoidosis on the Marshall Protocol - a treatment that kills the bacteria that cause all forms of sarcoidosis.
These bacteria, called L-form bacteria, are described in greater depth in this article:
http://bacteriality.com/2007/08/15/l-forms/
These are people who, just like you, were once told by their doctors that the disease wasn’t a big deal and that that it is of “unknown” cause. Then, over the next years they got sicker and sicker, more symptoms appeared, and they ended up finding the Marshall Protocol which is the only treatment that currently exists which targets the CAUSE of your disease.
Right now, the only solution that mainstream doctors offer for sarcoidosis is to put patients on corticosteroids. These medicines will slow the immune system from killing the bacteria making you ill, causing a drop in inflammation that is produced when the bacteria are killed (this makes you feel better). But since your immune system is compromised, your bacteria will spread with greater ease to new organs and tissues, making you much sicker in the long run.
So I really, really, encourage you to read the information on this site and talk with other sarcoidosis patients that are on the Marshall Protocol before making any decisions about your disease. You are at a good place now. Because you have only recently been diagnosed your bacterial load is probably low and you will probably progress through the treatment easily. The sooner you start, the easier and shorter it will be.
Again, I am not trying to scare of worry you. I am just saying that leaving your disease alone or taking corticosteroids will only make you worse. On the other hand you can take action to today to treat the actual cause of your disease and recover as soon as possible.
A good place to speak with other sarcoidosis patients that are on the Marshall Protocol is at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th1). The site is moderated by patient advocates who will answer your questions free of charge, and can also put you in contact with other sarcoidosis patients who were once in your position. I think their feedback would be very helpful for you.
All the best,
Amy
I was diagnosed with sarcoidosis in the lungs just after christmas and it is starting 2 really get me down. I am on prednisolne and they have got rid of the lumps and swelling i had on my joints and arms and legs but i still feel pains now and then. The thing that is starting to beat me now is how tierd i keep getting and the shortness of breath.I wondering how affective is this mp and how bad r the side affects and how long dose the treatment last for?
Hi Ben,
Well, I can definitely understand why your sarcoidosis is bringing you down. Unfortunately, your doctor does not understand the actual cause of sarocodosis, and prednisone is only “covering up” your symptoms while the illness gets worse.
We now understand that sarcoidosis is a bacterial disease that is caused by L-form bacteria, bacteria that have mutated from their regular forms, lost their cells walls, and are able to live undetected inside the cells of the immune system. Read more about them here:
http://bacteriality.com/2007/08/15/l-forms/
And an interview with a researcher who works with them here:
http://bacteriality.com/2007/09/09/markova-interview/
Although researchers have known about L-form bacteria for over a century now, mainstream medicine has essentially ignored their existence because they can’t be cultured in the same way regular bacteria can. So doctors think there are no bacteria in their patients when really they just don’t know how to grow them correctly. But among those select researchers who do know how to culture them, they have been repeatedly identified in patients with sarcoidosis.
The Marshall Protocol is a treatment that effectively kills the L-form bacteria that cause sarcoidosis. Read a basic description of the treatment here:
http://bacteriality.com/about-the-mp/
And this article gives a description of how the MP medications (which are mostly pulsed, low-dose antibiotics) work in greater detail:
http://bacteriality.com/2007/10/11/antibiotics/
It is definitely in your best interest to wean off your prednisone as soon as possible. The reason prednisone covers up some of your symptoms is that it slows the activity of your immune system. This decreases the ability of your immune system to kill the L-form bacteria making you sick. This makes you feel better because it is when L-form bacteria die that they cause a real rise in symptoms, because the immune system secretes inflammatory molecules in response to their death. So the prednisone is slowing this die-off reaction, but in reality the bacteria at the heart of your disease are finding it easier to spread because your immune system isn’t working up to par.
The MP is definitely effective. Patients can expect to fully recover - once the bacteria causing the illness are dead, patients are once again completely healthy. Check out the interviews on this site with MP patients who have reached a state of recovery. The phase II Marshall Protocol trials currently conducted through the study site are showing an 100% response rate.
There are pretty much no side effects to the medications and the MP is a very safe treatment. Patients on the MP take one ARB medication called Benicar that helps activate the immune system. It’s one of the safest drugs on the market with pretty much no documented side effects. The antibiotics are taken at such low doses that there have been no detected side effects.
This 2 sections discuss the safety of Benicar and the antibiotics.
http://bacteriality.com/2008/02/23/misconceptions/#2
http://bacteriality.com/2008/02/23/misconceptions/#3
The treatment takes several years to complete because patients must proceed slowly in order to manage the bacterial die-off reaction that starts once the antibiotics kick in. But improvement is gradual and things get easier and easier as you get to the later stages. I know a multi- year treatment seems daunting, but believe me, it’s worth it to get your full life back.
In order to learn more about the treatment read as much information as you can at the Marshall Protocol study site. This forum is a good place to start:
http://www.marshallprotocol.com/forum2/
Also, if you have more questions about the MP, a good place to ask them is at 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 answer your questions free of charge (the MP is run by a non-profit agency.)
Hope this helps!
Amy
Thank you so much for all of the information on Sarcoidosis. My brother was hospitalized for it because the doctors 3 years ago did not know what it was. He just had another flare up and was put on 40 mil of prednisone a day. I am not happy about it but to help should i tell him to stay away from Vitamin D in all areas of his life from food to sun? Help
Hi Toni,
I’m so sorry to hear about your brother. However there is now a curative treatment for sarcoidosis called the Marshall Protocol that will allow him to recover, not just manage his disease with steroids.
The treatment does involve removing vitamin D from the diet. That is because, as molecular biologists have long realized, the precursor form of vitamin D is not a vitamin but a secosteroid. Unfortunately, this secosteroid form of vitamin D obtained from diet and supplements binds the receptor in that controls the innate immune system and shuts it off. This allows the bacteria that cause sarcoidosis to spread with greater ease. This article describes the actions of vitamin D on the immune system in greater detail:
“The truth about vitamin D: 14 reasons why misunderstanding endures”
http://bacteriality.com/2007/09/15/vitamind/
So at the very least your brother should start to avoid vitamin D so that his immune function will improve. However, simply avoiding vitamin D will not allow him to recover. He must do the full Marshall Protocol in order to kill the bacteria at the heart of his disease if he is to get better. I hope that you will show him information about the treatment and encourage him to start it as quickly as possible.
The Marshall Protocol is being used by doctors around the world and over 200 medical professionals are members of the study site. Patients who start the treatment receive guidance, free of charge, from nurse moderators in exchange for reporting symptoms in a weekly progress report. The treatment is run by the non-profit organization Autoimmunity Research Foundation. Here is their website:
http://autoimmunityresearch.org/
The following two 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 and biofilm bacteria”
http://bacteriality.com/2007/10/11/antibiotics/
The bacteria implicated in sarcoidosis are both biofilm bacteria and also L-form bacteria - bacteria that have mutated from their classical form and lost their cell walls. They are able to live inside the cells of the immune system where they cannot be killed by standard antibiotic therapy. These bacteria have been studied for over a century but have been largely ignored because they don’t grow under normal laboratory conditions. Read more about them here:
“Understanding L-form bacteria”
http://bacteriality.com/2007/08/15/l-forms/
Here is an interview with an MP doctor that I highly recommend you read:
“Interview with Dr. Greg Blaney”
http://bacteriality.com/2007/10/31/blaney/
More information about the treatment can also be found on the study site itself. A good place to start reading is at the following forum:
“Essential information about the MP”
http://www.marshallprotocol.com/forum2/
I’m sure you have more questions about the Marshall Protocol. The best place to ask them is at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by L-form bacteria, hence the name Cure My Th1). You questions will be answered free of charge by patient advocates.
I’m so glad that you are an advocate for your brother and are helping him find a way to treat his disease!
Best,
Amy
Dear Amy Proal:
An adult son of our good friends has been diagnosised with this disease. At first I thought they must be talking about Sclerioderma (sp?) where muscles harden in the body’s organs and eventually cause the lungs and heart to fail.
This particular victim of Sarciodosis is male, in his thirties and has 50% of his lungs affected. Are there any treatment centers in central Canada which treat this disease? He does have difficultly travelling as well so flying long distances for treatment is not an option for him.
Any information on Canadian centers would be greatly appreciated.
Yours truly,
Christine Jacobson,
Medicine Hat, Alberta, Canada
Hi Christine,
Your friend’s son can fully recover from sarcoidosis by doing the treatment described in greater detail in other articles on this site. It’s called the Marshall Protocol (MP) and is part of phase II trials monitored by the FDA.
Doctors around the world are using the MP to treat patients with sarcoidosis and other inflammatory diseases, and over 200 medical professionals are members of the study site for the treatment.
The Marshall Protocol is an open-based internet study so there are no specific centers that administer the treatment. Instead, each patient on the treatment works with their own physician who prescribes the necessary medications. However, they are also required to report their progress weekly on the Marshall Protocol study site where their questions and concerns are addressed free of charge by nurse moderators. The nurse moderators volunteer for Autoimmunity Research Foundation, the non-profit organization that runs the Marshall Protocol.
Here is a link to their website:
http://autoimmunityresearch.org/
Here is the link to the Marshall Protocol study site:
http://www.marshallprotocol.com
The following two 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 and biofilm bacteria”
http://bacteriality.com/2007/10/11/antibiotics/
As you will read in the articles, it is now understood that sarcoidosis is a bacterial illness. It is caused by L-form bacteria, or bacteria that have mutated from their classical form, lost their cell walls, and are able to hide undetected inside the cells of the immune system. Doctors are generally oblivious to their presence as they do not show up on conventional laboratory tests. Read more about them here:
“Understanding L-form bacteria”
http://bacteriality.com/2007/08/15/l-forms/
I also highly recommend that you read this interview with a Canadian physician who treats all his patients with the Marshall Protocol. Depending on where your friend’s son lives in Canada, perhaps he could become Dr. Blaney’s patient:
“Interview with Dr. Greg Blaney, MP physician”
http://bacteriality.com/2007/10/31/blaney/
If he can’t work with Dr. Blaney, and his current physician is unwilling to put him on the Marshall Protocol, he can request a list of doctors in Canada who do administer the treatment at this link:
http://www.marshallprotocol.com/forum11/11348.html
I truly hope you will share this information with you friends and their son because as of today, the Marshall Protocol is the only curative treatment for sarcoidosis. That’s because it is able to kill the bacteria at the heart of the disease. All other treatments for sarcoidosis are merely palliative and try to cover up disease symptoms while the patient gets gradually worse. Your friend’s son is young and he has a full life ahead of him if he does the Marshall Protocol.
I’m sure you have more questions about the treatment. The best place to ask them is at 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, who volunteer for Autoimmunity Research Foundation, will answer your questions free of charge.
Good luck!
Amy
Hi Amy, Thank you so much for writing me back, My brother is going to the doctor again next week for his 2 week check up and we are going to ask about the Marshall Protocal, if he says no we will go to another doctor. He was on 40 mil of pred, but he stopped after 3 days, he just doesn;t feel right on them and he looks terrible. I got him started on a no vitamin D diet, But he is in the sun all day because of work. But I do have one question if you can help me..Should he be on Omega 3 he was on them months ago and then ran out and stopped. I appreciate anything you say, Thank you again, I just hate to watch him go through all this ya. I think all the paperwork i printed out made him more scared then before when the doctors really didn’t know what it was.
Hi Christine,
It sounds like you are taking all the right steps. Stopping the prednisone and cutting vitamin D from the diet will help prepare him very well for the MP.
As for your question, no he definitely doesn’t need to take omega3 capsules. Most omega3 supplements are generally made from fish oils and thus have vitamin D, so patients on the MP definitely do not take omega3s.
I’m so glad you are planning to be persistent when it comes to finding an MP doctor!
I’m so sorry to hear about the way your brother is suffering, but I hope it’s a source of comfort that you are taking action and he will get better.
Best,
Amy
my husband was just diagnoised w/sarcoidosis,sarcoid granulomatosis pseudotumoral,/&perivasculitis of the eyes.
PLEASE…. ANYONE OUT THERE THAT IS GOING THRU THESE ILLNESSES, THAT I’VE DESCRIBED ABOVE LIKE MY HUSBAND HAS, PLEASE DIRECTLY EMAIL ME PERSONALLY WITH ANY HELP & INFORMATION,AS I AM TRYING SO VERY HARD TO FIND OUT EVERYTHING AS I HELP MY HUSBAND FIGHT FOR HIS LIFE! THANK YOU IN ADVANCE 2 ALL OUT THERE IN CYBER WORLD! stay strong
stay
healthy,never,ever give up hope!
god bless you all
warmest wishes 2 all-
god bless!
thank u all so very very much!!!!
contact me directly at-
booboo10496@comcast.net
Hi Susan,
I’m so sorry that I have not written you back more quickly. Right now I’m in Sweden and for the past three days have been giving a presentation on MP related science at the Karolinska Institute.
I understand how upset you must be that your husband has been diagnosed with sarcoidosis and I’m very sorry to hear that he is suffering.
But he can use the treatment described in further detail on this site to fully recover from the disease.
We now understand that sarcoidosis is a bacterial disease. It is largely caused by Lform bacteria that have mutated from classical bacteria, lost their cell walls, and are able to live undected inside many types of cells including those of the immune system. You husband’s current doctor is almost certainly unaware of the fact that these bacteria are making him sick because they don’t show up on standard laboratory tests and doctors are not taught about them in medical school.
However, these bacteria have been photographed numerous times in the lungs of patients with sarcoidosis for decades, and there are even entire texbooks that discuss the fact that can are able to cause chronic diseases such as sarcoidosis.
The treatment your husband must do in order to recover is the Marshall Protocol. Patients on the treatment use a medication that activates the immune system along with low dose, pulsed antibiotics to gradually wear away at their Lform bacteria load. Once patients kill the bacteria at the heart of the illness, they are able to completely reverse the disease.
We have seen many people fully recover from sarcoidosis thanks to the Marshall Protocol. Be sure to read the interviews on this site with patients who have recovered from the disease. And the people I have interviewed are just a small number of those people recovering. I have a whole list of people with sarcoidosis to interview about their improvements and recovery thanks to the treatment.
The Marhsall Protocol is part of a phase II open internet study trial that is monitored by the FDA. You or your husband can visit the study site board to learn about how he can be included in the study. The site is:
http://www.marshallprotocol.com
The Marshall Protocol is run by a non profit agency called Autoimmunity Research Foundation so all services on the study site are free of charge. Here is a link to their website:
http://www.autoimmunityresearch.org
What I highly encourage you to do right now is write a post describing your husband’s situation at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by Lform bacteria, hence the name Cure My Th1). You may ask as many questions about the treament as you’d like and they will be answered free of charge by experienced patient advocates. Many of the patient advocates, as well as many of the patients who post on the site, had or have sarcoidosis themselves. So posting on the site will allow you to speak with many people who know exactly what you husband is experiencing.
In the meantime it is very important that you to read as much information as possible on this site and also on the MP study site so that you become familiar with the treatment. By reading the articles on this site you should have a much better idea of what the treatment involves and all the science that supports it.
Good luck, and if you take the time to research the MP and put your husband on the treatment, he can get his life back.
Best,
Amy
Hi,
I am a 44 year old female diagnosed with sarcoidosis in the lungs about 4 years ago. My spleen was involved also. They knew this from my blood counts. I was given steroids for about 6 months. About 2 years later, my spleen was enlarged again and they assumed it was a flare up of sarcoid and it was removed in June ‘07. My spleen was 7 lbs. and 16 inches long. All the Dr.’s thought it would be loaded with sarcoid, but come to find out I was diagnosed with Hairy Cell Leukemia. Only 600 to 800 people in the whole U.S. are diagnosed with Hairy Cell. Everyone is saying it is very rare that I have two diseases. I just went thru 6 treatments of chemotherapy. I’m waiting the results of the bone marrow biopsy. Have you had anyone else ever state they have Leukemia along with sarcoid? Sometimes I wonder if I wasn’t misdiagnosed about the sarcoid, but it is still showing up in my lungs.
If anyone else has this, please write me. I am going to check out the MP website now.
Hi Denise,
I’m sorry not to have written you back more quickly, I just got back from a medical conference.
Your story is unusual but the fact that your doctors had difficulty figuring out whether you were suffering from sarcoidosis or leukemia doesn’t surprise me.
The research described on this site, which stems from the molecular modeling work of biomedical researcher Trevor Marshall, shows that diseases such as sarcoidosis and leukemia are greatly connected. That’s because it has now become clear that both sarcoidosis and leukemia are caused by bacteria. Many of these bacteria are L-form bacteria, bacteria that have mutated from regular forms of bacteria, lost their cell walls, and are able to hide undetected inside the cells of the immune system. Read more about the here:
http://bacteriality.com/2007/08/15/l-forms/
L-form bacteria have been studied for over a century and there are even textbooks about them. However they have largely been ignored because they are not picked up by the laboratory tests that detected classical bacterial forms.
Every single form of bacteria known to man has an L-form, meaning that there are a tremendous variety of these pathogens out there, a number great enough that they are able to cause nearly every inflammatory disease.
The fact that these bacteria cause sarcoidosis is well documented. We have many patients on our phase II study who have completely recovered from sarcoidosis by using the treatment called the Marshall Protocol that effectively kills L-form bacteria.
There is less specific evidence on the fact that these bacteria cause leukemia, but L-form bacteria have been found in the tissues of people with nearly every form of cancer. Be sure to read this interview with a researcher who spent his entire career uncovering L-form bacteria in the tissues of people with cancer:
http://bacteriality.com/2007/09/11/cantwell/
So in your case, I think you are suffering from a high level of L-form infection, from an array of species capable of causing both symptoms of sarcoidosis and leukemia. The key to recovering successfully from both diseases, or whatever diagnosis you end up getting is to do the Marshall Protocol.
I’m sure that your doctors may want to treat your leukemia with more chemotherapy and I don’t know how to advise you on that issue since I’m not a medical doctor. I would also hypothesize that the reason chemotherapy helps patients with leukemia is because it kills cells that have been infected with L-form bacteria, killing the bacteria themselves in the process. But there is no way that chemo will effectively kill all your infected cells.
I do know that even if you do chemo for your leukemia, you should follow the chemo by doing the Marshall Protocol in order to treat your sarcoidosis and also to eliminate any bacteria involved in leukemia that managed to escape chemotherapy.
The Marshall Protocol is part of a phase II open internet trial moderated by the FDA. There are thousands of patients on the treatment and over 400 medical professionals are members of the board. The study site is run by Autoimmunity Research Foundation, a California non-profit agency. Here is their website:
http://www.autoimmunityresearch.org
Here is a link to the MP study site:
http://www.marshallprotocol.com
Here are links to two articles that describe the Marshall Protocol in greater detail.
http://bacteriality.com/about-the-mp/
http://bacteriality.com/2007/10/11/antibiotics/
Because you are dealing with both sarcoidosis and leukemia I highly encourage you to post about your situation on 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 answer your questions free of charge and should be able to offer further feedback on your situation.
Also, be sure to read as much as you can about the MP - the articles on this site as well as the information on the study site so that you can best understand how the treatment will help you.
I am very glad you’ve found the MP. If anything you need to start it as soon as possible because of your sarcoidosis, but I am confident that it will also help you recover more fully from your leukemia.
By the way, I don’t know of anyone else with sarcoid and leukemia, although some of our members have cancer along with their other autoimmune or inflammatory diseases, so there are others dealing with two conditions at once.
Hope this helps at be sure to post at curemyth1.org.
Best,
Amy
Dear sathishkumarselvaraj,
Can you please tell me about that do your aunty went through the treatment with Marshall Protocol in India. you can mail me at sanjeev.baranwal@gmail.com
Hello i was diagnosed with uveitus about 2 years ago and told sarcoidosis could be the cause but have been back every 6 months and not been put on any meds . I dont really feel sick or anything other than the floaters and occasional eye pain. If i had uveitis would other symptoms have shown up by now. I have recently had a chest x ray and that was fine what other symptoms would i be having with this disease.
Hi Chris,
Your story thus far reminds me of what many of our more ill patients report about their early days. In case you haven’t checked out this site in greater depth, it discusses research related to the Marshall Protocol - a phase II open based internet trial monitored by the FDA. The treatment is sponsored by the California non-profit organization Autoimmunity Research Foundation. Here is their website:
http://www.autoimmunityresearch.org
The Marshall Protocol is the first curative treatment option for diseases such as uveitis because it was created based on molecular and clinical data which clearly show that uveitis, sarcoidosis, and other inflammatory diseases are actually caused by a large microbiota of chronic ideopathic biofilm and L-form bacteria. Read more about L-form bacteria here:
http://bacteriality.com/2007/08/15/l-forms/
These bacterial forms have been clearly identified in the eyes of patients with uveitis and in the lungs of patients with sarcoidosis. Read this article about the Marshall Protocol and vision in order to learn about more specific studies showing these bacteria in the eyes. It also explains how by killing these pathogens many other people with eye conditions have fully recovered:
“Eye inflammation, vision, and bacteria”
http://bacteriality.com/2007/11/13/eyes/
Going back to what I said at the start of this message, patients accumulate the bacteria that cause uveitis and sarcoidosis very slowly. The bacteria themselves weaken the immune system, making it easier for new bacteria in other locations of the body to take hold. That’s why patients might start out with only uveitis and then find that after several years, their immune systems have allowed bacteria to also enter the lungs and cause sarcoidosis. That’s why your doctor is checking to see if you might develop sarcoidosis.
Many of the patients in our phase II study have already reached that point where they are very sick with both diseases. But you are actually in a fortunate place. If you start the Marshall Protocol now, you can kill not just the bacteria causing your uveitis, but also bacteria that may be accumulating in other areas of your body that will almost surely cause you to develop a disease such as sarcoidosis in time. You will save yourself a huge deal of misery in the long run by doing the treatment now.
When the MP is started before bacterial load has spread extensively (as seems to be your case) the treatment is much easier to do. Thus, I suggest that you find a doctor who will put you on the treatment as soon as possible.
Here are two articles that describe the MP in greater detail:
http://bacteriality.com/about-the-mp/
http://bacteriality.com/2007/10/11/antibiotics/
Here is a link to the Marshall Protocol study site itself. There is no fee to use the site, and discussions are moderated by volunteer nurses. Patients are required to post their progress once a week so that their data can be used for the study:
http://www.marshallprotocol.com
If you have more questions about the Marshall Protocol, the best place to ask them is at the following website:
http://www.curemyth1.org Th1 refers to diseases caused by bacteria, hence the name Cure My Th1. You questions will be answered free of charge by experienced patient advocates.
Good luck!
Amy
One of my friend has been diagnosed with lung sarcoidosis after the chest X ray .He has reddish rash on his skin, when the skin biopsy confirmed either sarcoidosis or leprosy.Please tell me the name and adress of Indian doctor who can prescribe Mp.
Hi Uttam,
I cannot directly give you the name of an MP doctor in India as I don’t have access to such information.
You can visit the Marshall Protocol study site and request a list of doctors who already have patients in India at the following link:
http://www.marshallprotocol.com/forum11/11348.html
I also recommend that you visit the study site (www.marshallprotocol.com) and click on the “members” button on the upper right hand portion of the screen. There you can search for MP members by location. Search for other MP patients in India. If any live near you, send them a private message over the site asking them who their doctor is and if you can have his/her contact information.
If you still can’t find a doctor using those methods, then perhaps you can convince your current doctor to put you on the treatment? I recommend printing out articles from this site and the study site to show to your current physician.
You can also order a MP presentation book for doctors off the MP study site at this link:
http://www.marshallprotocol.com/forum2/11458.html
Here is a link to Dr. Marshall’s published papers in case you would like to show any of them to your doctor. I also recommend that you order the “Science DVD” off the MP study site and show it to your doctor.
http://www.trevormarshall.com/papers.htm
Last, but not least, it’s important that if you are serious about doing the MP, you fill out an application form to join the study at the following website:
http://www.curemyth1.org Th1 refers to disease caused by L-form bacteria, hence the name Cure My Th1. The patient advocates on the site will give you the form and also answer any questions you have about the treatment free of charge.
Good luck!
Amy
Could you please tell me if sarcoidosis can be passed on to your children, my husband was diagnosed several years ago and since then have had a child.
Hi MS,
Yes, unfortunately the bacteria that cause sarcoidosis can easily be passed from parent to child. The bacteria I’m referring to are chronic forms that persist in what are referred to as L-form and biofilm states. The following two articles describe these bacteria in more detail.
http://bacteriality.com/2007/08/15/l-forms/
http://bacteriality.com/2008/05/26/biofilm/
Studies show that these bacteria survive in the sperm and the egg. They can also cross the placental barrier and infect a child while it is still in the womb. The following article describes the process by which bacteria are passed from parent to child in much greater detail:
“Bacteria vs. genetic predisposition: the spread of chronic disease in families”
http://bacteriality.com/2007/10/31/family/
It is also quite easy for relatives to pass the bacteria that cause sarcoidosis and other chronic inflammatory disease to a child during its first weeks of life. This article describes why:
“Babies and bacteria: how pathogens may affect an infant during its first weeks of life”
http://bacteriality.com/2007/10/17/infants/
So it’s possible that your husband passed some of his sarcoidosis-causing bacteria to your child. But you should be comforted by the fact that the treatment described on this site - the Marshall Protocol - effectively kills L-form and biofilm bacteria. Son if your child starts to show signs of sarcoidosis, at the very first sign of illness, you can put him/her on the treatment.
The Marshall Protocol has not yet been used on children under 8 years of age. However, those children 8 year of age an over generally progress through the treatment rather quickly and with great success, especially if it is administered as quickly as possible.
So make sure you read up on the Marshall Protocol and have information on hand if necessary. This article gives an overview of the treatment:
http://bacteriality.com/about-the-mp/
Best,
Amy
After reading the above interview I was verymuch overwelmed. I would like to congratulate the interviwee and her family and which her the very best in her future life.
I feely sorrowed and in deep pain to inform you that my mother is saffering from the same dieases. At first (in 2002 or 03) we thoough the dieases was a siple one and did not do much. But for the last 3-4 years my mother has been rounding every doctor in the country and neighbouring countries. At first she was diagonized witth Arthrites then Lung Fungus then TB. You can imagine the countless and needless medications she has taken. at the end of 2006 a doctor in the country diagonized her with Sarcodiosis( Intertisial Lung Dieases).It was very sad.
For treatment she went to Dubai and Egypt. The doctors in Egypt started the Perdisolon medication in addition to numerous tablets. At the moment her sprit, hope is gone. Though the anti-immunie medication is showing posotive outcomes, the ultimate success is in doute. In addition to trouble of breathing(lung scaring), she has stomach aches, dry eyes,dry mouth and pain in the joints and in the bones near her chest and back. So having all this problems her hope and faith is gone.
She is a mother of 4 with all of them in college or higher ststus. The only but biggest problem in my family is my mothers. If it was not for her we wouldn’t be here. So I want her to see the prosperity of her family and her grandchildren.
Please, anyone, if what is posted is of reality, please, advice me on how to do it .
With regards
Merhawi Tecle.
Hi Merhawi,
It’s good to hear from you. I am so sorry to hear about your mother’s circumstances. I can imagine how difficult it must be to see your mother suffering.
Her story is similar to many of the stories of our other patients. Unfortunately, we are living during a very sad time in medicine, where the mainstream medical community has completely missed the true cause of chronic inflammatory disease.
They continue to focus on the idea that these diseases are somehow genetic or “autoimmune” and have ignored the possibility that they are caused by pathogens.
Unfortunately, a new body of research, including Dr. Marshall’s research, has made it increasingly clear that sarcoidosis other inflammatory diseases are caused by a wide array of chronic, intrphagocytic, metagenomic bacteria that persist in the L-form and in the biofilms.
This knowledge has started to infiltrate the mainstream at a greater rate, but your mother’s doctors have continually treated her in the wrong way - suppressing her immune response, which in reality makes it easier for the bacteria at the heart of her disease to spread.
Anyway, the MP is a serious medical treatment that can effectively kill these bacteria. It is a phase II open-based internet trial monitored by the FDA. Hundreds of medical professionals are members of the study site.
Dr. Marshall’s latest work has been published in peer-reviewed journals and he has a busy schedule of presenting work at mainstream conferences such as the upcoming 6th Annual Conference on Autoimmunity, at which he will be chairing a session about vitamin D, the VDR, and the MP pathogenesis.
You mother can clearly benefit from the treatment, but it sounds as if she has a very high bacterial load. I have to warn you that recovery will be very difficult for her as she will have to manage constant bacterial die-off reactions that will cause her symptoms to flare.
I recommend that you discuss her case further with the moderators at the following website:
http://www.curemyth1.org (th1 refers to disease caused by bacteria, hence the name Cure My Th1). The patient advocates on the site will answer questions about the MP and your mother’s condition free of charge.
I wish you both the best and hope that you mother can start the MP and effectively manage the bacterial die-off in order to recover.
Best,
Amy
Hi Amy,
I have diabetes and was diagnoised with sarcoidosis in my lungs in April this year (2008). I went in for a sleep study and ended up staying in the hospital for 10 days. I have been taking predinsone, but it runs my sugar level up really high. My vision is getting really funky also. I love to sew and this is really getting to me that I can’t see as well any more. i already wear glasses. I was told that my sarcoidosis was caused by me having bronchitis so much in as I was growing up and in my twenties and thirties. I would have it at least 4 times a year. My doctor says that when I finish this run of predinsone then I am to just stop taking it. What can I do? Thanks Gail
Hi Gail,
Sorry for the delayed response. I’m so sorry to hear about your symptoms and the fact that they seem to be getting worse. But the answer to reversing them and turning your life around is simple. You must start the Marshall Protocol.
The treatment is a phase II open internet study monitored by the FDA. Patients with exactly the diseases and symptoms and diagnoses you describe are experiencing immunopathology (the body’s response to bacterial death) and slowly killing off the chronic pathogens that are making them ill.
The fact is, sarcoidosis is not caused by bronchitis. It is caused by chronic bacteria that live inside the cells and inside communities called biofilms. You clearly harbor these bacterial forms - there are many of the them, and they cause all kinds of aches and pains. Several articles on this site describe them in greater detail. You may also want to read this article to familiarize yourself with the MP:
http://bacteriality.com/2007/10/11/antibiotics/
I also highly recommend you watch this video which summarizes the treatment and the science that forms its backbone:
http://bacteriality.com/2008/05/07/mpintro/
Prednisone is a terrible option for treating your diseases as it will slow your immune system. While this temporarily lowers inflammation in your tissues, the fact that your immune system is not working up to par actually allows your bacteria to spread with greater ease.
If, after reading as much information about the MP as possible on this site and on the study site itself - http://www.marshallprotocol.com - you still have questions about the treatment the best place to post them is at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria, hence the name). The patient advocates on the site will answer your questions free of charge.
Unfortunately, the official study is now closed to new participants due to overwhelming demand. However, you can fill out an application form at curmyth1.org so that you can be admitted to the study when a slot opens up.
But whether officially part of the study or not, patients on the MP need to work with their own doctor in order to get the medicines necessary to to the treatment, so you will have to find a prescribing doctor no matter what. If you educate your doctor about the MP, he/she can guide you through the MP even if you are not an official member of the study. The Phase 1 guidelines are available on the study site and the Phase II/III guidelines can be obtained if your doctor joins the “Private Section For Medical Professionals” on the study site. Once a member of the forum, he/she can also communicate with other researchers/doctors involved with the MP as well as Dr. Marshall himself.
So read, read, read to become familiar with the MP and then take advantage of the advocates at curemyth1.org to fine tune your knowledge. Also, convincing your doctor to put you on the treatment or finding a new, more open-minded doctor who will is a must.
Good luck!,
Amy
Hi There,
I was diagnosed in May with Sarcoidoisis of the lungs after a month of my ankles and legs swelling so bad I couldn’t even get out of bed. (not good with a 2yr old) I had seen 6 different doctors who all had differnt answers the biggist one being “sometime’s stuff like this just happens” or It’ll will go away just keep your feet up. Once again easier said than done. So I finally went into the hospital Emergency dept. That is where after 8 weeks I had a specialist come from another hospital and tell me what it was. He put me prednisone right away because I had taken it Once from another doctor and it went away within hours but once I was done talking it it also came back within hours.
I had a chest X ray found out my lungs where swollen and cloudy. I started by having to take 6 prednisone’s a day now I am down to 3 but doesn’t prednisone only hide the problem?? And It cant be good to be taking so much for so long. Anyways so I went to my checkup appointment and basically felt that because I was still on the prednisone and my sysmptoms hadn’t come back yet the doctor seemed to think I was fine and sent me off and to come back in 3 months.
I told the doctor about how sometimes my eye’s get all blury and I have major shortness of breath and sometimes even chest pains.. And still he did nothing but send me away. I am writing from Calgary, Canada and I am hoping that if you have any info on what I should do next you could please let me know..
Hi Kim,
I’m so sorry to hear about the progression of your disease. There is only one curative treatment option for sarcoidosis and other related inflammatory diseases. It’s called the Marshall Protocol and is discussed in greater detail on this site.
Your doctors are probably not aware of the latest research on sarcoidosis which has made it clear that the illness is caused by chronic bacteria that are able to live in protected colonies called biofilms and inside the cells of our immune systems. Read more about these pathogens here:
http://bacteriality.com/2007/08/15/l-forms/
http://bacteriality.com/2008/05/26/biofilm/
The Marshall Protocol uses pulsed, low dose antibiotics and a medication that activates the immune system to gradually kill the bacteria causing sarcoidosis over the course of several years. The Marshall Protocol is part of a phase II study trial monitored by the FDA and there are hundreds of patients recovering on the treatment, many with sarcoidosis. Read more about the treatment in these articles:
http://bacteriality.com/about-the-mp/
http://bacteriality.com/2007/10/11/antibiotics/
Also, be sure to watch the following video which give as overview of the Marshall Protocol and the science that forms its backbone:
http://bacteriality.com/2008/05/07/mpintro/
If, after reading as much information as possible about the Marshall Protocol on this site and on the study site itself (www.marshallprotocol.com) you still have questions about the treatment, the best place to ask them is at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria). Your questions will be answered free of charge by patient advocates. In the meantime you will have to work with your own doctor while on the MP so you may want to start presenting some of the materials on the study site to your physicians so that they can learn about the treatment. If your current physician won’t put you on the MP then find one who will (there are other Canadians on the MP who can hopefully refer you to their doctors). Full recovery is possible, but only if you use the MP to kill the bacteria at the heart of your disease.
Best,
Amy
Do your feet and hands ever swell from sarcodosis
Hi Kim,
This is Amy. Leesa has recovered from sarcoidosis thanks to the treatment described in further detail on this site called the Marshall Protocol.
So although her hands and feet might have swelled from sarcoidosis before, they don’t anymore. However, swelling of the limbs is common in sarcoidosis (read some of the other patient interviews on this site which make that clear). So if you are suffering from swollen hands or feet perhaps you should ask your doctor to screen you for sarocidosis.
If it turns out you do have the disease, be sure to further consult this site and the Marshall Protocol study site - http://www.marshallprotocol.com - for information on treatment.
Best,
Amy
Help! My vitamin D level is 95 normal is between 15-55. My calcium is high too. I lost my whole colon to 14 years of ulerative colitis removed at 27… I am now 52. I have bouts of intercostal pleurdynia pain in left chest cavity every few months or weeks… and when I do have these attacks I can’t take normal breath without pain. Deep breaths are impossible. I have to stay very still and take an anti-imflammatory. I don’t have all the symptoms of Sarcoidosis but I am wondering since Ulcerative Colitis and other bowel problems are often caused by a weakened immune system… is the weakened immune system caused by genetically inclined sarcoidosis. I am always tired, hard to focus, brain fog, general irratibilty, anxiety/depressed, and can’t seem to do anything in my life… even keep a job or a marriage. I am exhausted and I don’t know why. Can some body help me? Thank you!:) I know it is not me… I know it is my body and something to do with the underlying cause of it all… a poor immune system. I am going to get off all bread, wheat, yeast, gluten and see if I get at least a little energy. I am taking B-12 but it’s really not helping much. The high calcium and high vitamin D make me very tired. I feel like I am in la-la land all the time.
Hi Carol,
I am so sorry to hear that you are feeling so miserable!
You are correct that the underlying cause of your disease symptoms are related to the fact that your immune system isn’t working up to par. But the reason it isn’t working well is because it’s activity is being slowed by the presence of chronic pathogens - the same pathogens that are causing your wide array of symptoms.
It is now understood that inflammatory diseases like ulcerative colitis CFS, IBS, sarcoidosis, and many others are the result of infection with chronic bacteria that are able to live inside the cells of the immune system and in protected colonies called biofilms. Most doctors are still unaware of the research that implicates these pathogens in inflammatory disease which is why you have ended up where you are -very sick.
So I highly encourage you to learn more about these bacteria and the treatment that can kill them so that you get your health back. The treatment is called the Marshall Protocol and is part of a phase ii trial monitored by the FDA. Patients on the treatment take a medication that activates the innate immune system and carefully chosen pulsed, low-dose antibiotics in order to gradually kill the bacteria making them ill. Read more about the Marshall Protocol here:
http://bacteriality.com/about-the-mp/
http://bacteriality.com/2007/10/11/antibiotics/
I highly recommend you watch the following video about the Marshall Protocol and the science that forms its backbone:
http://bacteriality.com/2008/05/07/mpintro/
You can use the Marshall Protocol to recover, however I must warn you that it takes a long time to complete because patients must manage a bacterial die-off reaction that causes temporary increases in symptoms after each antibiotic dose.
The Marshall Protocol study is officially closed due to high demand, but you can get on a waiting list. In the meantime, if you find a doctor willing to prescribe the necessary medications you can start the treatment simply with his/her help.
After reading as much as you can about the Marshall Protocol on this site and on the study site itself (www.marshallprotocol.com) if you feel you’d like to give it a try, post about getting on the waiting list at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria)
The patient advocates on the site will also answer questions about the Marshall Protocol free of change and may be able to help guide you in finding a doctor.
Best of luck!
Amy
PS. Vitamin D actually slows the immune response as described in this article. So you need to get your level down and as quickly as possible! People on the MP need a level of vitamin D under 20 ng/ml in order to succeed.
http://bacteriality.com/2007/09/15/vitamind/
Also, folic acid helps bacteria replicate their DNA. If your B supplements contain folic acid I would stop taking them as well.
I have sarcoidosis also found out that i had it back in 2000, I was very scared at first , cause i thought that it was some form of cancer. why is it that after all of these years people haven’t been talking about it? so that the lost people like myself would have some clue to what this disease is, I get scared sometimes, thinking i’m going to die but my prayer is that doctors and things have shows explaining to people just what is sarcoidois. I have even ask Oprah to have a show on sarcoidosis, we need help!! and, prayer!!( I’LL BE PRAYING FOR ALL OF U WHO HAVE SARCOIDOSIS AND PLEASE PRAY FOR ME! GOD BLESS,YOUR FRIEND IN CHRIST PAMELA
Hi,
My Mother-In-Law was suffering from Sarcoidosis. She came to know about this 1.5 years back. Her treatment was going on by a Homepathy Doctor and last week I came to know that now she has no symptoms of it. Amazing as of now…
-Sanjeev
India
Hi Pamela,
Sarcoidosis is a serious disease, and I can certainly understand your deep concern about it. If you read my site you know that I often discuss a Phase II trial and multi-year therapy monitored by the FDA called the Marshall Protocol:
http://bacteriality.com/about-the-mp/
There are a number of patients with sarcoidosis who have done the MP and have gotten back their lives:
http://bacteriality.com/2008/06/03/interview21/
http://bacteriality.com/2008/03/02/interview17/
http://bacteriality.com/2007/11/04/interview7/
There are actually more such patient interviews in the sidebar.
My advice would be to do what you can to get on the MP. Learn whatever you can. Eventually, you’re going to want to register at CureMyTh1.org where you can get your questions about the MP answered and apply to enter the study.
Best,
Amy
Hello Amy,
I came across this website and want to know more about Marshal Protocol as I have been diagnosed with Sarcoidosis. My lungs have been affected and my doctor has not prescribed me any steroids as yet. I suffer from dry cough, wheezing, and breathlessness. Please tell me how to reach the right person and whether my condition can be cured or not.
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