Comments on: Interview with Jane Taylor-Aoki: Neurosarcoidosis, systemic sarcoidosis; spasticity, myasthenia, CNS dysfunction, joint pain, pulmonary, splenic and cardiac involvement.

By: Paul Albert

Paul Albert — Sun, 01 Nov 2009 15:06:29 +0000

Hannes,

Improvement on the MP tends to be well-defined but incremental. Most people stick with the MP, because they want to keep improving.
http://mpkb.org/doku.php/home:patients:mp_duration
http://mpkb.org/doku.php/home:publications:mp2008_survey

Best,
Paul

By: Hannes

Hannes — Fri, 30 Oct 2009 22:52:46 +0000

Hello Amy,

thanks for the answer!
In two weeks i will see a doctor in Berlin who will help me to begin with the Marshall Protocol. I wonder if anyone has recoverd and quit the medication after a certain amount of time. The people from the interviews seemd to be still under the treatment. But anayway, better to fight the cause of the disease continuously then degrading slowly or rapidly.

By: Amy Proal

Amy Proal — Mon, 26 Oct 2009 01:15:22 +0000

Hi Hannes,

Sorry about your symptoms. I’m glad you’re looking into the MP. I can tell you straight away that “mpfailure” is very incorrect in saying that more people fail than succeed on the MP. In the vast majority of cases where people claim “failure”, they’re actually experiencing a bacterial die-off reaction that they are unable to differentiate from the symptoms of their disease. Although we warn people who start the MP repeatedly that they will experience rises in symptoms as they kill bacteria (a reaction known as immunopathology), some people inevitably start the treatment, get scared, and think that these rises in symptoms are a sign they are getting worse. Think about things logically. The MP medications have few, if any side effects.
http://mpkb.org/doku.php/home:protocol:mp_antibiotics:antibiotics_concerns
http://mpkb.org/doku.php/home:protocol:olmesartan:safety

There’s no way that the symptoms “mpfailure” were a sign of his disease getting worse. I also think it would help you to read this article:
http://bacteriality.com/2008/02/23/misconceptions/

A lot of the misconceptions may sound familiar to you. I suggest that when investigating, you talk to people you know have followed the guidelines properly, who understand the concept of immunopathology, and who are working closely with their doctors. You might try posting some comments at CureMyTh1.org to get in contact with people like this. They can hopefully give you some more accurate concerns before starting the MP.

Best,
Amy

p.s. Have a look at the Knowledge Base article, Starting the MP:
http://mpkb.org/doku.php/home:starting

By: Hannes

Hannes — Wed, 21 Oct 2009 11:58:56 +0000

Hello Amy,
i´am not a native speaker so my diction is probably strange.
I`ve read a lot of interviews here and they are very promising.
About 5 months ago i had something like a flu. Since then my health decreased rapidly. I have joint pains, neurological pain, sight problems, heart problems and an overall weakness. A lot of tests have been made, blood, ct,mrt and so on. Aside of the finding of fibrous dysplasia, and they think probably some more dangerous tumor could be involved, there was no result yet. I have seen so many doctors like never before.
Now i´am considiring the MP. I found one far away doctor who is applying it.
What concerns me are stories like the ones that are posted here:
http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1307141
Especially the one from mpfailure, who seems to be honest in describing his/her experience.
Of course not one protocol is working for everyone.
But what to do if you are one of the few that is not responing well and maybe getting worser in the long term, how to distinct a IP from a probably real danger, like discribed by the guy mentioned before.
He says that he know people who responded well but much more who went even more sick.
I found the genereal idea of the MP appealing and of course wish to find something that helps.
Do you have an idea what to think about those question.

Thanks a lot. It seems that you are a very dedicated person!

By: Amy Proal

Amy Proal — Wed, 18 Feb 2009 00:45:57 +0000

Hi Tarun,

I’m so glad to hear you found a doctor.

I apologize for the late response. We do indeed have patients on the MP who are using to reverse celiac disease. There’s definitely connection with gluten intolerance of any kind related to disrupted bacterial populations in the gastrointestinal tract. To get more specific info about patients with celiac disease, you can post at CureMyTh1.org.

Best,
Amy

By: Tarun

Tarun — Wed, 04 Feb 2009 16:39:45 +0000

Amy,

Ive interacted with you on another post about my intent to start on MP to treat my pulmonary sarcoidosis. Great news is that a leading doctor in Pune, India was very well aware of MP (we got to him after talking to several other docs), and will support my treatment. Just did a gallium scan (the inflammation is moderate for now, and the ‘panda face’ confirms sarcoidosis as have other tests).

My question was this: I also have been diagnosed with Gluten intolerance (Celiac’s disease). Could this be a co-infection as well? Not sure about the level of research on Celiac and it causes, but I did read about the propensity for it to occur with sarcoidosis.

Thanks

By: Amy Proal

Amy Proal — Sun, 09 Nov 2008 00:24:20 +0000

Hi Mauricio,

Based on Jane’s experience and the data collected from other patients in a study called the Marshall Protocol, edema is very likely caused by chronic bacteria. You can likely kill these chronic bacteria and reverse your edema by starting the Marshall Protocol yourself.

The Marshall Protocol is part of a phase II trial monitored by the FDA. There is no fee to become a member of the study. All you need to do is find a doctor in your area who is willing to prescribe you the medications necessary to do the treatment and to offer you medical guidance.

This article describes the Marshall Protocol in greater detail:

http://bacteriality.com/about-the-mp/

I also highly recommend that you watch the following video which discusses the MP and the science that forms its backbone – in simple terms that are easy to understand:

http://bacteriality.com/2008/05/07/mpintro/

If after reading as much information as you can about the MP on this site and on the study site itself (www.marshallprotocol.com) you still have questions about how to get started you can post them 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.

Good luck!

Amy

By: mauricio gomez

mauricio gomez — Thu, 06 Nov 2008 00:43:50 +0000

hi there!!

I have a problem with my edema in my foot, face, and hand. I want yo tell you about resolve edema from my legs, face, and hand?

By: Karen

Karen — Sun, 23 Mar 2008 23:40:15 +0000

Hello Jane
Its helpful to hear of your recovery and positivity. I like your advice regarding the trial phase, although I’m unclear exactly how to implement it. Would one follow the phase one guidelines as given, but limit to a certain timeframe and examine symptoms (or blood results?) I’m going to have blood tests done at the end of this week and will then consider entering phase 1 (as soon as I can find a willing doctor).
My background is in arts and I’m finding the science confusing, baffling. Its difficult – on top of illness, parenting and working – to find the time to study and understand. The study site seems – from this perspective – so distracting and wide-reaching. Each trail I follow leads somewhere I hadn’t initially intended to visit/read.
Understanding is a key problem. I feel hopeful, when I read the science, but understanding it is like trying to understand advanced mathematical formulae… I have to accept a great deal on trust as a foundation to accepting a great deal more! I feel I’m building my understanding on very shaky footings, but I so very much want my understanding to be solid!
But hopefully this will become clearer, firmer, with time.
This site, your story, is what led me to the MP.
I’m very grateful.
kind regards
Karen

By: Jane Taylor-Aoki

Jane Taylor-Aoki — Sun, 23 Mar 2008 11:58:58 +0000

Hi Karen
Thank you for your kind words. I have a few thoughts in reply which I hope might be of help. Firstly, mothers with young kids don’t have the time to be ill. If you have a diagnosis of Sarc and are feeling sick, you are. Over reliance on ACE tests (did you know that there are three ACE genotypes?) and MRI imaging led to my neuro-symptoms being dismissed by a pulmonologist with the disastrous result that I spent five weeks in hospital and was away from my children for three months.

It is most important for the sake of your family that you attend to your own care first (remember the oxygen mask instructions on a plane) because Sarcoidosis can really sneak up on you. I went from being unwell, but mobile, to being seriously ill and disabled in less than five days. It is very hard to regain function once you have lost it.

If you are considering the MP, I would suggest doing a trial phase to see what degree of light sensitivity you have and getting used to thinking about how you could minimize your light exposure. Also, most MP patients will tell you that they experience significant relief from Olmesartan alone so perhaps you could start on this aspect of Phase I under guidance from the MP moderators while getting your bearings. The path to recovery can be long so you would need to devise a contingency plan for coping with childcare and maintaining your business in case you went through some difficult immunopathology. My advice would be to concentrate on the core issues that are important to you and let the rest take care of themselves for a while (they do actually).

Children are surprisingly resilient and resourceful if they know that they are loved. Rather than trying to explain what is going on, something like a “morning hug” time when you all sit together may help both you and your children face each day with calm–even if the rest feels like chaos. It gets better – and better – believe me!
Take care
Jane