Err..where did you hear that the MP doesn’t work for everyone? The treatment currently has an 100% response rate. What that means is that essentially everyone to start the MP experiences bacterial die-off reactions, which of course mean that bacteria are being killed and that eventual recovery is on the horizon.

Some people cannot twist their minds around the concept of immunopathology - or the fact that bacterial die-off will cause you to get worse before you get better. These people (often with CFS) have been know to quit the treatment and say it wasn’t working for them. Of course the MP was working, and quite well - they just didn’t understand that a rise in symptoms is supposed to occur, particularly during the first months. Such people usually end up on other message boards. They don’t understand the MP science and can mislead people like you who need to understand it accurately. So if you have a question about disease recovery rates, I recommend asking people on the MP or the patient advocates at http://www.curemyth1.org.

I am quite confident that the MP will work for you as your symptoms are incredibly indicative of bacterial infection. You could get your D metabolites tested and see if you have a dysregulated D ratio if that will make you feel more confident that the treatment will work for you. But the easiest thing to do is just start if. If you experience immunopathology then it is definitely working!

About avoiding light. No, no, you don’t totally have to avoid light. People who are very light sensitive usually have to dim the lights in their houses or switch to lower WATT bulbs but they can still totally see. I think you will be surprised that outside, even with your dark sunglasses on, everything will look quite bright. And over time light sensitivity gets better, so you can tolerate more and more stronger lights.

Have you filled out a patient form on http://www.curemyth1.org? Make sure you do that now. I was told this morning that the study site is actually closed to new members because of an overload of patients who want to do the treatment.

I think that new patients will still be allowed to start the MP and post on the site but will have to fill out a form first and may have to wait until a space opens up before they can start. So make sure you alert the moderators on http://www.curemyth1.org now that you are interested in the MP. Tell them you have been talking about it with me for several days and have already requested the doctors list. That should help you get admitted to the study as soon as possible.

Not to alarm you there, I just want you to be able to start the MP right away if you decide to do so. Or at least get in the first slots on a waiting list if there is one now. Also, make sure your Mom does the right thing.

Best,

Amy

Thanks again for all your help xxxxxxxx

It really makes me happy to hear that the MP is coming together for you. In a sense I started this website with someone like you in mind. I thought of myself before I found the MP and how I endured so much suffering before starting the treatment. So it makes me feel good that someone my age, who is hurting the way I was, can read some of my pieces, learn more about the MP, and do it also.

There are already a good deal of people on the MP in the UK although you will probably be the only one of your friends who knows about the MP. At first maybe my friends thought I was a little nuts, but as I explained the treatment to them and then started to feel better, I think most came ’round. In fact, I get a lot of requests from friends today asking about how their parents or other friends can do the MP.

I’m so glad your Mom is also considering doing the MP. Way to go by requesting the doctors list already!

I wish you both the best!

Amy

I have trouble with reading out loud, spelling and pronouncing words now where this was never a problem before. Infact at school I was always the one in class who wanted to read out loud lol! I have noticed one thing though that my fungal toe nails have started growing out since I stopped eating sugar and started treating my candida. Thats not really anything though considering all the symptoms I suffer with. No one ever sees my feet anyway lol!

I understand about what you are saying with people not returning to full health, my nutritionist also had C.F.S and says she is well but she still has food intolerances which makes me wonder is she really well. I think its hard to know what a 100% is when you have been ill for so long. I know so many people with C.F.S who end up relapsing too. This was also one of my fears that all through my life I would get a little better but then crash. How disheartening is that!
Im wondering whether to start the MP soon as possible or wait till august as just has just started here. Either way its going to take me a while to find a doctor and study the whole thing so I know as much as I can possibly remember. I’ve looked on the website so much I feel like I’m going into information overload lol! I have noticed some difference with supplements but nothing major and I’ve also had side effects to put up with from the prednisolone even though I’m only on a small dose. My mum has a thyroid problem and high blood pressure and she herself is thinking about starting the treatment.

Anyway I look forward to reading your story when you have written it. I will maybe even notice even more similarity!

Take care and thanks again xxxxx

P.S my mum has joined the forum and posted a message for a list of doctors xxx

I’m really glad you had a better day yesterday. I hope today is a good day too, all things considered. Nevertheless, your days can all be good ones if you do the Marshall Protocol.

Yes, I definitely understand how much information there is to absorb about the MP. It’s based on 20 years of solid molecular modeling research that has now been combined with a large body of clinical data. I know it’s hard to accept that the Marshall Protocol turns a lot of what mainstream doctors are saying these days on its head. Yet if you think about it, mainstream doctors have no solution to offer for chronic disease. That’s because they are on the wrong track. In an effort to find genes that cause particular diseases, they have completely overlooked their actual microbial causes.

Anyway, I just put up a video today that explains the basics of the MP. I really hope you listen to it as I think it will walk you through the main topics you really need to understand in order to grasp the science that forms the backbone of the MP and the basics of the treatment itself. Here’s the link:

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

The reason that essentially all hormonal pathways (including those that regulate the thyroid, adrenal glands sex hormones etc) become dysregulated in people with chronic disease has to do with the ability of the chronic biofilm and L-form bacteria that cause chronic disease (collectively referred to as the Th1 pathogens) to create substances that bind and block the vitamin D receptor.

The vitamin D receptor is a fundamental receptor of the body that controls the activity of the innate immune system. It also controls the activity of several enzymes that keep the level of the active vitamin D metabolite - called 1,25-D- in the correct range.

So when the receptor is blocked by bacterial substances, the enzymes don’t work and 1,25-D begins to rise to an unnaturally high level. The more bacteria one acquires, the higher 1,25-D goes up.

Unfortunately, at high levels, 1,25-D bind receptors called the nuclear receptors that essentially control all our body’s hormones. 1,25-D displaced the metabolites that are supposed to be in these receptors, the ones that are supposed to correctly activate or thyroid, adrenal glands etc. So those pathways crash and stop functioning.

The complicated version of the science described above can be found in the following peer reviewed paper by Dr. Marshall. Your doctor may want to see it:

http://TrevorMarshall.com/BioEssays-Feb08-Marshall-Preprint.pdf

When I took thyroid and adrenal supplements they did essentially nothing as far as I could tell. If they did help in any way, it was just by temporarily covering up the problem, not by actually killing the bacteria causing the issue in the first place.

I did almost every possible treatment for CFS. Dr. Teitelbaum’s entire regimen, heparin injections, colloidal silver IVs, tons of supplements, kutapressin, almost everything out there. Sometimes I would have periods where I felt a little bit better, but inevitably I would always crash. I now realize that any supplement that made me feel temporarily better was only usually slowing the activity of my immune system. That caused less of my bacteria to die, and since it is the death of the Th1 pathogens that really causes a rise in symptoms, I would feel a little bit better but it never lasted. The prednisolone you are taking, which slows the immune system, is definitely working in that manner.

Light sensitivity during the first years on the MP has to do with the fact that people with chronic disease have a severely dysregulated vitamin D metabolism. This piece describes light sensitivity in greater detail:

http://bacteriality.com/2008/02/23/misconceptions/#8

During the first 18 months on the MP, my die-off was strong and kept me from really being able to feel the improvement I was making “under” the die-off due to the fact that my bacterial load was decreasing. But after that time, I did note improvement, and the die-off became easier to tolerate. I don’t know if you will follow the same pattern as me, as everyone who starts the MP is different, But if you do the treatment, you do have to be willing to feel worse before you feel better, at least for a time.

The idea that CFS will go away on its own is a myth. I find people who claim to have recovered from the disease are usually just trying to sell you something. Or some people are taking so many drugs that they say they are better yet still can’t exercise and they crash and burn later because they are taking an immunosuppresant. Since starting this website and working with the MP I have never once heard from an actual person who has reported truly recovering (we’re talking no medicines anymore, capable of running a marathon) from CFS on their own. I have only known people to recover thanks to the MP. This article describes the difference between how the MP will cure you disease vs. other treatments for CFS:

http://bacteriality.com/2008/02/23/misconceptions/#14

I don’t have my story written right now, but that is one of my projects. But our cases are extremely similar.

That’s why I truly hope that you do start to post on http://www.curemyth1.org where you can work with the moderators to really get the ball rolling and start the MP.

Good luck!

Amy

Just want to let you know that I will answer your questions tomorrow. Today I went to see live tapings of the Daily Show and Colbert Report here in New York. It was cool, but I didn’t get time to answer any more questions here on Bacteriality.

Best,

Amy

I really want to start this treatment. I need time to get more prepared though, in terms of diet, finding a doctor and learning more about the MP. It will be difficult to black out my house not that I mind just because I have to think about my other family members. Howcome when you start the treatment you become more sensitive to light?

I’m so happy that you are almost living a normal life. That is amazing. I bet you feel as if you have been given a second chance in life. Its weird how similar are cases were which fills me even more with joy that you have almost been released from these terrible symptoms!

I have had a just a little more energy today and its felt amazing thats why I am determined to do all it takes to get well.

So did you notice a reduce in your symptoms within in the first year or did you only notice this after 18 months? I suppose when you suffer with immunopathology its the symptoms that you already suffer with that willl get worse as its the bacteria that causes these symptoms.

The only thing that does concern me a little is cutting out light, does this not have any adverse affects on ones health?

Well done on this site by the way, it’s really great that your using your time to reach out to people. Im sorry you had to suffer for so long but Im so pleased that you have brought something good out of it!!

Another thing that confuses me a little is howcome certain people with CFS get better without other treatments. Is there body able to eventually kill off the pathogen?

It would be really great to read your story and I was just wondering where I could read that?

Sorry for asking so many questions, I will ask them on the other site in future. Thanks again for the information and taking the time to help me.

All the best xxxxx

I can really identify with you. I was about 18 when my symptoms of CFS started to get bad, and by age 20 they were at their worst. At that point I was completely bedridden, essentially dead to the world, and suffering from (I kid you not) every symptom or condition you have described above. In fact, I was taking the same thyroid and adrenal supplements and probably some of the many supplements you are taking as I had a whole cabinet full of them. The only thing I wasn’t taking was prednisolone.

Anyway, I’m so glad that you have learned about the Marshall Protocol because it is your way out of this horrible disease. Yes, the MP does take time, but what is 3-5 years compared to being sick for the rest of your life? I found that the MP wasn’t much worse than being sick in the first place. My symptoms of bacterial die-off could be strong, but I could generally control them by adjusting the dose of my antibiotics.

The great thing was that my mindset changed. I knew that once on the MP, feeling worse was no longer a sign that I was getting worse and just deteriorating. It meant the opposite. It meant that I was killing the bacteria causing my disease and getting better. So I welcomed extra symptoms for that reason. I was like, “Take that bacteria!” every time I felt worse.

For the first year or so I mainly just experienced immunopathology (symptoms from bacterial die-off), but around a year and a half, I started to feel things ease up a bit. I started to feel more resilient and strong, in a way that can only indicate true recovery, not that fake band aid feeling that supplements temporarily offer.

Now I am three years into the MP and living almost a normal life again. I live with my boyfriend, go out with my friends, work on the computer for at least 8 hours a day, have gone on 3 long vacations in the last few months and have two medial conferences coming up where I know I will travel, present work, and hold up just fine. It’s amazing how different I feel. Everyday I am just so happy because I feel so much better.

So what I’m saying is that the immunopathology can be hard sometimes and maybe a little scary if a symptom flares unexpectedly, but I think just being sick with a terrible disease and not doing anything to target the bacteria at the heart of the illness is a much scarier situation. Right now you are young, and in a few years, you will be planning for the future again if you do the MP.

Anyway, it’s important to understand as much as possible about the MP before starting it. Be sure to read all the information you can about the MP on this site and also on the MP study site:

http://www.marshallprotocol.com.

The MP is part of phase II open-based trials monitored by the FDA. The treatment is run by the non-profit foundation Autoimmunity Research Foundation (ARF). Over 400 medical professionals are members of the MP site. There are thousands of people on the MP, almost all of whom are reporting improvement and/or recovery. Here is a link to the ARF website:

http://www.autoimmunityresearch.org

Also, if you have more questions about the MP (and I’m sure you do!), the following website is the best place to ask them. The patient advocates on the site will answer your questions free of charge and can also help you find an MP doctor. Here’s the link:

http://www.curemyth1.org Th1 refers to diseases caused by bacteria, hence the name Cure My Th1.

Good luck and I really hope to see you on the Marshall Protocol study site in the coming months…

Best,

Amy

Since Ive been on the prednisolone Ive have caught virus after virus and have been suffering with a sickness and throat bug for over 9 weeks. Ive also have more joint pain. Can anyone shed any light on this??

Im now looking into doing the MP. Even though it scares me a little Im determined to get well. It upset me first that it takes years however least its aiming to something rather than just having more problems and getting worse. The thing that scares me a little is that with this treatment I have got worse and Im just scared that this too will make me worse. Before I started the treatment I was able to go out once every few weeks although I didnt really enjoy it because it was always a struggle. Then I could also have a walk everyday and do a few tasks around the house during the day.
I seem to feel better at night, does anyone else feel like this too? I still think that the adrenals are a part to play with the illness. They deal with stress so if bacteria has been there for a long time the constant stress on them will cause them to be fatigued.

I really hope and pray that all of you reading this and your family members health returns. My heart goes out to you all. Its difficult to suffer to this extent. xxxxx