I’m sure there are more but I think Guss and Matt (Robyn Russell’s son), both of whom are interviewed here on Bacteriality, are off all MP meds. Bear in mind that the length of the treatment depends on the severity of illness.

Patients do not have to take the MP drugs forever. Have a look at the article on the duration of the MP.

Best,
Paul

I’ve heard off and on about the MP theory but have never heard of anyone actually cured using the protocol. By ‘cured’, I mean, they’ve stopped taking the drugs, and are thus cured.

Is there anyone who has been off the drugs for a year or more and remained cured, or does one have to take the drugs forever?

Thank you,

Kelly

Yes, CFS is often treated as a psychological disease here in the US as well…which, based on research by biomedical researcher Trevor Marshall and other scientists interviewed/described on this site could not be farther from the truth.

As seem to have read, we now believe the illness results when patients accumulate high loads of chronic bacteria – bacteria that are still not detected on standard lab tests.

Many of these bacteria do persist in the blood, which is why I understand why you might think a blood transfusion might help you. Unfortunately, I think the opposite would be true. If you had a transfusion, not all your blood would leave your body. The bacteria making you will would definitely still remain in the blood left behind in your body. But mainly, the blood from the transfusion would almost certainly harbor even more chronic bacteria that could simply add to your bacterial load. The bacteria that cause chronic disease are so prevalent these days that almost everyone harbors some of them. You have no idea who’s blood you would get and the person from which it was drawn could have had a bacterial load themselves, since the blood for transfusions is not screened for the pathogens that cause CFS and related diseases.

Long story short, I think you would actually risk adding more bacteria into your system. Especially because any new bacteria could trade DNA with your current bacteria in a process called horizontal gene transfer. This could create more harmful species. Read more about horizontal gene transfer here:

http://bacteriality.com/2007/08/28/horizontal-gene-transfer/

So I strongly dissuade you from getting a blood transfusion to try to help your CFS. I do however encourage you to investigate the Marshall Protocol – a treatment described on this site that kills the bacteria that cause CFS. The treatment is long and difficult at points, but it is safe, and it works. It is definitely the best way to start clearing bacteria out of your blood.

Read more about the treatment here:

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

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

The following video gives a really good overview of the MP and the science that forms its backbone:

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

If you have questions about the MP you can always also post them at the following site where they will be answered free of charge by patient advocates:

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

Best,

Amy

But for any who might see this message before it is deleted, it may interest them to know that a virtual hallmark of the illness that caused Dr Peterson to call the CDC, and was originally named “Chronic Fatigue Syndrome” was a pathologically low sed rate.
An elevated sed rate would be more consistent with Lyme or some other bacterial infection.

So it may be very likely that your “CFS” is substantially different than my CFS, and may be a possible factor for a variable response to the Marshall Protocol.

-Erik
Participant: 1988 Holmes et al CFS definition study group

Osler’s Web
Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson

Antecedent Epidemics page 215

*The following year, Anthony Komaroff and his associate Dedra Buchwald told an audience of doctors and researchers at the University of Washington in Seattle that approximately 40% of patienst with the disease had abnormally low sed rates. “With the exception of sickle-cell disease,” Buchwald said, “we’ve never seen sedimentation rates that are consistently zero, one, or two, with any other illnesses. We’ve speculated these patients may have difficulty forming red cell membranes, as is the case with sickle cell disease, because of a distorted red cell pathology.” Two years later, Canadian clinician Byron Hyde reported in the fall 1989 issue of his newsletter to sufferers, “To my knowledge, there are only five diseases that have a pathological low sedimentation level: myalgic encephalomyelitis (the British, Australian, and Canadian term for the chronic illness) sickle-cell anemia, hereditary sperocytosis, hyper-gammaglobulinemia, hyper-fibrogenemia.”

Yes a high SED rate is very common among our study subjects. We have not checked patients’ SED rates in enough detail for me to tell you if they are 3 times higher than normal.

We allow any patient to start the MP and many don’t have insurance. Such patients cannot afford blood tests, so although we would very much like to know their SED rates at different times during treatment, we can’t. So collecting specific info on SED rates is not among the data we gather. Although patients who do have insurance report regularly that their SED rates are well above the normal range.

Regarding your question about statistics of MP patients who have dropped out or not done well on the treatment…..

One of the first things one must define is failure on the MP. The MP is based on the premise that Benicar and the antibiotics will cause a bacterial die off reaction referred to as immunopathology (IP). If a patient starts the MP and experiences immunopathology it is assumed they are targeting bacteria at the heart of their disease.

Almost every one of our subjects to start the MP has experienced immunopathology. In that sense, we have a near 100% documented response rate to the treatment.

If immunopathology is caused by bacterial death then it is quite likely that a patient experiencing the reaction would follow in the footsteps of others who have improved and recovered as immunopathology gradually decreases bacterial load. However they would feel worse due to the IP for quite a while as improvement can take years.

One difficult aspect of the MP is that many patients have such high bacterial loads at the onset of treatment that their immunopathology is extremely difficult to tolerate. As mentioned above, some CFS patients experience severe immunopathology for over two years or even more before sensing improvement. In this sense the MP is very difficult.

So the vast majority of patients who stop the MP stop because they can no longer tolerate their immunopathology and they would rather return to palliative medications. Some don’t understand the concept of immunopathology and mistakenly think their diseases symptoms are getting worse. While these people stop the MP they are not necessarily treatment failures as their high immunopathology levels signify that they were indeed killing bacteria exactly as expected by the MP. So the problem is not so much that the MP doesn’t work to kill the bacteria that cause chronic disease. The problem is that some people simply can’t deal with the heavy symptoms of bacterial die off.

Other people stop the MP because they don’t have sufficient family support or because they find that light sensitivity becomes too much of an issue if they have to work.

So many people quit the MP and remain symptomatic despite the fact that in theory the treatment could have worked for them had they stuck with it for a longer time.

We are aware that many people who post on our study site and discussion forums never follow through with the MP. Many quit for the reasons described and others. It’s difficult to keep track of an online cohort, many people post irregularly or are too sick to post at all. So I cannot give you specific drop out rates. But a fair amount of people stop for the above reasons. Those people who recover on the MP generally are not desperately ill, have a good support network, have a basic grasp of the science behind the treatment, and have a doctor who understands the MP fairly well.

I hope this helps somewhat.

Best.

Amy.

Was this answered? I may have missed it. Why doesn’t the MP reflect quotas on the number of individuals who are not helped and have dropped out?

We have several study subjects with neurosarcoidosis who are responding very well to the MP and reporting improvement and recovery. Based on our data I believe that you would also respond to the treatment.

The best way to find a doctor is to ask for a list of MP doctors in your area at the following website:

http://www.curemyth1.org (Th1 refers to bacteria). The patient advocates at the site should provide you with the list and there is no charge for their service.

If no doctor on the list works out for you, you should learn as much about the MP as possible and try to present it to your current doctor or an open-minded doctor in your area. Showing them a list of Dr. Marshall’s peer reviewed papers and presentations is a good place to start:

http://mpkb.org/doku.php#publications_presentations

Also here is a folder of MP information to present to a doctor:

http://www.marshallprotocol.com/forum2/11458.html

Good luck!

Amy

I have Neurosarcoidosis. Will MP work for me? If so, how do I find a Doctor in my area to help me get started?

Thanks,

Joe

Most people on the MP are quite intelligent and have tried numerous therapies for their diseases before doing the MP. If there was an easier route to recovery than the MP then why would so many patients be sticking with the MP even when it is a difficult treatment?

The decision to do the MP begs this question – how badly do you want to get a completely normal life back? Not a life where you might have good days and bad days and still have to take supplements and drugs – but a totally healthy existence again.

Taking supplemental T3 may well palliate your disease symptoms and allow you to live a more active life. But without killing the bacteria causing your disease you will not actually be well. But perhaps you would rather take this route then have to deal with several years of difficult herxing on the MP? It’s your decision.

Once on the MP another tick or mosquito bite will not make you ill again because

a) the pathogens the insect harbors will be killed by the antibiotics
b) the MP strengthens the innate immune system so that even when the treatment is stopped it can still fend off the pathogens transmitted by insects.

While the Dr. your reference in Maryland seems open to looking at vitamin D through a new lens his interpretation of the MP is unfortunately very wrong. I would suggest he read Dr. Marshall’s published papers before writing blog posts.

Most MP patients who are seriously ill take 3-5 years to complete the treatment. They do get better as time wears on and herx reactions become easier and easier. But the MP is still tough and requires commitment.

I recommend that you continue reading about the MP, and try to speak to Lyme patients who are currently on the treatment to get a real perspective of what they are dealing with.

Best,

Amy