CISRA’s Synergy Health Newsletter

Issue 9. The Marshall Protocol (MP) in Laymen’s Terms (2006)

This is an approximate transcript of the November 12, 2005 presentation for a meeting of a Lyme Disease group that meets in Whittier, California. The talk focuses primarily on the Marshall Protocol and also mentions some additional treatments that helped the speaker prior to the Marshall Protocol. Some additional material is included that was not included in the talk due to lack of time (primarily Questions and Answers, numbered 11 through 14). (Note: Mention of a new development has also been added, i.e., Dr. Marshall has recently found that a small minority of patients do better at 20 mg Benicar every 6 hours, a lower dose than usually used in the MP).

Speaker: J.C. Waterhouse, Ph.D., Editor, CISRA’s Synergy Health Newsletter

Part I. An Introduction to the Marshall Protocol (MP) and Some Things that Helped Me Pre MP

Hi, I am really glad you could all come. I want to thank Earis Corman for all her hard work organizing these Lyme Support meetings. As you probably know, I am going to talk about the Marshall Protocol. We wanted to keep it simple and stick to the highlights, since it is such a big subject and sometimes can get rather complex.

I’ve been on the Marshall Protocol for almost a year and I believe I’m on my way to being cured of the chronic fatigue syndrome (CFS), fibromyalgia (FM) and Lyme disease that I have had for over 20 years. A year ago, I would have never imagined I would be well enough to give a presentation like this. Before the Marshall Protocol, I had tried two years of a diverse group of oral antibiotics, that included flagyl and tinidazole. I took some of the antibiotics in high doses and I tried them in various combinations and I didn’t improve.

I also want to introduce my father. A few months ago, he was diagnosed with sarcoidosis, probably caused by some of the same types of bacteria that have affected me. He has improved significantly by just avoiding vitamin D and sunlight. He has begun the Marshall Protocol and is making progress already. By the way, I will often call the Marshall Protocol, the MP, for short.

Sarcoidosis, the illness my father was diagnosed with, is the illness that the Marshall Protocol has been used on the longest. From Dr. Marshall’s perspective, sarcoidosis is pretty similar to the autoimmune diseases and Lyme disease, chronic fatigue syndrome (CFS) and fibromyalgia (FM). It is usually diagnosed through discovering inflammation in the lungs, but the disease can affect any part of the body. Some people with sarcoidosis were originally diagnosed with CFS, FM or lupus. In my dad’s case, he was first diagnosed with fibromyalgia and some heart arrhythmias and arthritis, but these other symptoms are probably all part of the same disease caused by bacteria.

Interestingly, there have been studies showing that many sarcoidosis patients test positive for the Lyme disease organism, Borrelia burgdorferi (e.g., Hua et al. Chin Med J (Engl). 1992 Jul;105(7):560-3). So, this argues in favor of their being quite similar, except that in sarcoidosis, there seems to be a concentration of effect on the lungs, which we typically don’t see in Lyme disease. This is probably because there are some additional types of bacteria in sarcoidosis that affect the lungs more.

Although, I don’t think you should decide to do the MP based on my experience alone, people often want to know what my experience has been like. In short, I am responding very much like the sarcoidosis patients, just as predicted. Most of my symptoms have improved significantly. For more details, you can see: “My Progress on the Marshall Protocol — Going Slowly and Cautiously To Achieve Success” at http://synergyhn.com/slowmp. It should be noted that the dosages of minocycline I used initially are below the current recommended starting dose of 25 mg.

As I discuss various things, I will occasionally refer to the MP web sites (http://marshallprotocol.com and http://sarcinfo.com). These are conducted as free online information sources by the Autoimmunity Research Foundation (http://AutoimmunityResearch.org), founded by Trevor Marshall, Ph.D. Many of the more important links mentioned in this talk are listed at http://synergyhn.com/mplinks.

The reverse side of handout 1 has a couple of figures I will discuss in a little bit (see http://synergyhn.com/Figures). On the second handout is information on a newsletter, and on the back is the list of articles I have written over the years for CISRA’s Synergy Health Newsletter. The articles cover most of the things that have helped me, as well as some other topics. The articles are available for free on the web site or by email. When I mention Issue 2 or 7 etc.., during my talk, I am referring to this newsletter, which is available for free on the above web site, or through subscription (email version is free).

First, I’ll give you a very brief overview of my illness and mention a few of the things that helped me before the MP.

My Illness

My chronic fatigue syndrome started about 25 years ago with what seemed like a really bad cold. Several months before that bad cold, I had 2 tick bites, which caused no immediate symptoms and I didn’t pay any attention to them. But looking back, I now know the bacteria were probably becoming established. My health declined over several years until I became about 95% bedridden with severe fatigue, achiness, diarrhea and cognitive problems — I was exhausted from saying even 2 sentences in a row. At one point I was 25 pounds underweight. I looked “skeletal” and I stayed that way for several years.

The first thing to help me improve was learning how to deal more effectively with food allergies/sensitivities and intolerances. What I finally found after trying a lot of different rotation diets and elimination diets, was that the usual rotation diet, where you only eat a particular food every 4 or 5 days, only made things worse. It’s fine for preventing allergies from developing, but not if you are already allergic or sensitive to almost everything. You can read more about the reason for this phenomenon in Issues 5 and Issue 8 of CISRA’s Synergy Health Newsletter.

I finally improved and gained weight when I started eating a simple constant diet of my least allergenic foods. Then I would need to occasionally rotate off of these foods when I became sensitive to them after a few weeks. Then I would find a few other foods to fill in for a week or so and then go back to my least allergenic foods.

Later, I was able to improve my diet even further through the use of the pulse test. It’s based on Dr. Arthur Coca’s observation decades ago that the heart rate tends to go up after consuming a food or other substance you are allergic to.

I also found out about a short cut version of the pulse test that you can do at home. It has a lot of extra advantages. It’s more easily controlled for one thing. You can read more about it and other methods for reducing food reactions in articles in Issues 5Issue 8 (and Issue 10). A lot of what I found out on the practical side of things that helped me, I did not find in any books, but had to learn from experience. I think a lot of doctors like the usual type of rotation diet because it shows you are being encouraged to eat a large variety of foods. But I found that isn’t always the best thing, as in my own case.

Many people think that because they did one or two allergy tests or tried one or two rotation or elimination diet and it didn’t help them, that food reactions aren’t a problem for them. I would just suggest that if you have a lot of hidden food reactions, that it is probably helpful to try doing more testing and experimentation, along the lines I have written about. One problem is that the food sensitivities tend to change depending on how much you have been eating the particular foods. Plus, no single type of test can pick up all the types of reactions. Since the reactions are often hidden, even if you don’t know you have food reactions, these methods may be helpful.

It appears that the food and chemical allergies/sensitivities are likely due to the immune dysfunction caused by the Lyme organism (Borrelia burgdorferi) and other bacteria. Some people have reported their food and chemical sensitivities have been reduced or even have disappeared, sometimes within just a few months of being on the MP. It probably takes a lot longer for others. In my own case, my food reactions are largely unchanged after a year on the MP, but I look forward to them disappearing eventually.

Now, very briefly, I will discuss preventing colds and gastrointestinal viruses, which I used to have very frequently. It was such a relief, after trying nearly everything, when I finally found ways to prevent each type of infection (see Issue 7) that worked for me. For the colds, what worked was very low doses daily of sublingual and intranasal alpha interferon. For the gastrointestinal viruses, they were completely prevented by a very tiny daily dose of the homeopathic medicine Boiron Oscillococcinum, available from health food stores. Neither of these are recommended when on the MP, but I have decided to be the guinea pig on this and have stayed with these prevention methods even while on the MP. And I have found I have had no ill effects and they don’t seem to have interfered with my progress.

I should also mention that before I was able to prevent my colds, I found the homeopathic medicine Alpha CF was very helpful in reducing symptoms, but I haven’t used it when on the MP. It could virtually stop all the symptoms if you took it frequently enough (Update 2). The only symptom it didn’t stop was the fatigue, which was very bothersome, because I was already quite fatigued to begin with. For more on this subject, see Issue 7.

And for the other things that helped me, you can refer to the CISRA newsletter articles for details. But, I will briefly list the main things that have helped me, to some degree.  They include magnesium glycinate and intranasal glutathione, which reduced my sensitivities to inhaled dust and chemicals (the intranasal form didn’t help my food allergies but did help stop eye stinging and other symptoms that occurred from inhalants).

Also, a low carbohydrate diet helped (see several newsletter issues, for example, see Practical Tips for a Low Carbohydrate Diet). But since I reduced my food allergies/sensitivities prior to beginning the MP, I find I don’t have to be on a very low carbohydrate diet.

I found Dr. St. Amand’s protocol using guaifenesin helped. However, now I believe that the Marshall Protocol probably makes guaifenesin unnecessary. For those of you who are interested, I think this is because when you lower elevated vitamin D levels on the MP, it helps your body excrete phosphate more normally. So, by lowering 1,25D for the MP, you may be accomplishing what guaifenesin does. And, in addition, the MP kills the bacteria, which are the underlying cause.

Lastly, I will briefly mention a new roundworm species, which I discuss in one of my articles (Issue 7, http://synergyhn.com/roundworm). This microscopic roundworm, Cryptostrongyloides pulmoni (provisional name), has been found to have an association with chronic fatigue syndrome. I have tested positive for it– unfortunately, the test is not commercially available right now. As an experiment, which is not a part of the Marshall Protocol, I have been taking an over-the-counter drug that appears to be effective in killing the roundworm. I have been taking it once a month for the last few months. But so far, I can’t say that there is any evidence it has helped me. I began it at about the 6 month mark of the MP. But I believe I was improving at about the same rate on the MP before I began the anti-roundworm drug as I have been since I began the anti-roundworm drug. So, there is no evidence yet that it has contributed to my improvement (Note: I stopped this drug in Jan. 2006).

Dr. Marshall believes that the evidence suggests that the many non-bacterial coinfections that people find they have, like yeast (Candida), viruses and parasites probably don’t need to be treated separately. He believes that the MP gets rid of the bacteria and improves immune function. Then, this healthy immune system can control the coinfections. Some people have been finding this to be true for the yeast and for some viruses. This may also be true for the roundworm, but we can’t be completely certain yet. It may turn out to be different depending on the patient. I will provide updates on the roundworm treatment in the CISRA newsletter.

Now, there are a few things I should make clear. First, the approaches I have just discussed are not part of the Marshall Protocol. The only exception is that Dr. Marshall does recommend a fairly low carbohydrate diet, because sugars tend to feed the bacteria and decrease immune function. But overall, Dr. Marshall does not recommend combining other protocols for treating your disease with the MP, since the other protocols might interact in unknown ways with the immune system and interfere with healing. However, you can still take the things you really need, including most medications for pain, anxiety and depression. You can refer to the MP web sites for more details on what is compatible with the MP.

Second, although the other things I mentioned have helped me a lot, the Marshall Protocol has helped me improve more in a year than all those other things helped me in 20 years. However, I would mention that since I was so sick, I doubt I would have made it this far without having first reduced my food reactions. And I continue to minimize them and find it helpful.

Th1 Inflammation and the Marshall Protocol

Now, on to Dr. Marshall’s conception of these diseases and the Marshall Protocol.

I’m going to start with some definitions and a couple diagrams that will give a simplified explanation of how Dr. Marshall has come to see Lyme disease, sarcoidosis and the other related diseases.

First, many of you know what inflammation is, but I want to say a little about it. The usual way we think of it is when we have a local inflammation, like of the skin, due to sun burn, infection or irritation, like a rash. The skin gets red, and the area may swell, and it is probably painful.

But the immune system is incredibly complex. Even experts have a long way to go before they understand it all. And there are many different chemicals produced by our body that cause different sorts and levels of inflammation. Some researchers say that certain diseases are not inflammatory (like fibromyalgia), but they just mean a certain type and level of inflammation, like the more obvious types that occur in rheumatoid arthritis or lupus.

Other types of inflammation are more subtle, but they can have large consequences, especially when they are going on in your whole body. You may feel very tired and have aches and pains and feel flu-like. The inflammatory substances causing this may not always be detected in the blood because they may be primarily in your tissue, like your muscles, joints and brain. And these tissue areas are often where the bacteria are concentrated.

Some of you may have read that inflammation has now become a big topic. Researchers now realize that there are more subtle types of inflammation that are important and are found in many diseases, like heart disease, depression, cancer, Parkinson’s and Alzheimer’s. There was an article on it in Time magazine, called “The Fires Within” –it was in the February 23th, 2004 issue. It was a cover story and on the cover, it referred to Inflammation as “The Secret Killer.” No one can figure out the underlying cause of all this chronic inflammation. As possible causes, they mention viruses, toxins or the immune system just going haywire.

Sometimes, they mention bacterial causes for inflammation. In fact, some of you may know that the Nobel Prize in Medicine was given this year for the discovery of the bacterial cause of ulcers. Ulcers are basically a serious type of inflammation of the stomach lining. The bacteria that can cause ulcers (Helicobacter pylori) are even known to be able to lead to cancer.

And Dr. Trevor Marshall’s work has led him to conclude that bacteria, particularly a rather sneaky form of bacteria, called cell wall deficient forms, or CWD forms or cysts, are the key to many of these unexplained illnesses linked to inflammation. These stealthy CWD bacteria can transform and hide and can be harder to find than viruses. Dr. Marshall is not the only one to link these types of bacteria to chronic inflammatory illnesses, either. For instance some of you may have heard of Mycoplasma, Chlamydia pneumoniae or nanobacteria being connected to heart disease — these are basically CWD bacteria.

Now, to get a little more specific about inflammation, Dr. Marshall talks about excessive Th1 inflammation and “Th1 diseases”. Without getting too technical, I’ll try to define Th1 inflammation.

Th1 Disease is when the Th1 response causes excessive inflammation

There are two types of T helper cells– T helper is what the Th stands for. These are very important immune cells, also known as CD4 lymphocytes, and are the type that gets killed off in AIDS. Th1 disease is dominated by the first type of Th cell, hence Th1:

1. Th1 cells — produce natural chemicals, called cytokines, that promote a certain type of cell-mediated inflammation. One of these chemicals is called Interferon gamma. Th1 cells stimulate macrophage activity. Macrophages are immune cells that gobble up bacteria and other pathogens, debris and stuff your body wants to get rid of– think of them like pac men from the computer game. Macrophages are something we are going to talk more about it a minute — in fact they seem to dominate things and get out of control in Th1 disease.

2. Th2 cells — produce other chemicals that we won’t worry about (that promote B cell activity, e.g., IL-4, IL-10).

Now, on to Figure 1 on the handout (http://synergyhn.com/Figures). You can see really great photographs and even movies of these things viewed through a microscope on the MP web sites and conference DVDs. The classical forms of Lyme bacteria are often depicted as squiggly lines or spirals. Then there are other bacteria, which may be oblong or round. These large bacteria are the classical or typical forms of bacteria that doctors are most familiar with and they have thick rigid cell walls.

Classical bacteria may undergo an attack, which might be either antibiotics that attack the bacterial cell wall, or it might be from the immune system or simply harsh environmental conditions. In response, many bacteria may be killed, but many will also be stimulated to transform into forms that can survive the attack or the harsh environment. The bacteria are often being recognized and attacked because of their cell wall. So, it makes a lot of sense that the bacteria would have evolved a way to get around this. They get rid of that type of cell wall. They transform themselves into cell wall deficient forms.

CWD have been known and studied for many decades. You can get a great overview of the research from the Chicago Conference DVD. You can see how to obtain this set of 3 DVDs by going to the MP web sites (http://AutoimmunityResearch.org, address: 3423 Hill Canyon Ave, Thousand Oaks, CA 91360). The conference was held last March and it largely focused on CWD forms, CFS, Lyme, sarcoidosis and the MP. On the conference DVD, Dr. Lida Mattman talks about her decades of work on CWD. And you can get an excellent overview of Dr. Mattman’s research and that of many other scientists in her medical textbook (Mattman, LH. Cell Wall Deficient Forms: Stealth Pathogens. Third Edition. Boca Raton, FL: CRC Press; 2000).

In Figure 1, the CWD forms that the large bacteria transform into are represented (http://synergyhn.com/Figures).

Actually, CWD have a variety of forms. One form, is the form where each cyst is a tiny circle and they are in long string with a protective coating around them. Unfortunately, certain antibiotics that act on cell walls, like the penicillins, bicillin, amoxicillin, the cephalosporins, like Rocephin tend to stimulate the transformation of bacteria into CWD forms that then can resist attack. These commonly used antibiotics sometimes get rid of the acute symptoms, but usually only do so temporarily, because the patient still has these cysts. In the long run, the cysts or CWD forms may be just as serious a problem.

The CWD forms can enter and hide inside many types of cells. In the middle of Figure 1, is the macrophage, which is the type of cell we will focus on. The antibiotics flagyl and tinidazole are supposed to kill Lyme cysts, but they didn’t help in my case (others on the MP also report previous treatment failure with these drugs). It seems the MP can more effectively destroy the cyst forms (and will eventually kill the spirochetal forms as well). The MP may work better because it uses a combination of antibiotics with immune modulation. The MP is designed to kill the CWD forms of a wide variety of bacterial species, with a minimal level of side effects and complications.

The macrophages are supposed to gobble up the bacteria and kill them. But in Th1 disease, although the macrophages may gobble them up, the CWD have learned how to avoid being killed and to actually thrive inside the cells that are supposed to kill them. In a sense, they take over this important type of immune cell. And they seem to be able to invade many types of cells. They have infiltrated our territory, and our immune cells can’t counter them effectively. They can do harm just by being inside our cells, but they also can come out when conditions are favorable and change back into the classical spirochetal form.

Now, for more on how the CWD forms affect the immune system for their own advantage and how this relates to vitamin D and the MP.

First, Figure 2a shows a simplified view of the vitamin D situation in a healthy person (http://synergyhn.com/Figures). The inactive form of vitamin D, 25D, is the form that most healthy people get from the sun, diet and supplements (Note: In Th1 disease, Dr. Marshall concludes that virtually all the 25D produced through sun exposure is converted directly to 1,25D in the skin due to the role of inflammatory cytokines, http://marshallprotocol.com/forum2/2572.html). The precursor, 25D, is converted into the 1,25D active steroidal hormone form by the kidney. This is the form that really does things in the body. In healthy people, the kidney tightly regulates this conversion to keep 1,25D in a fairly narrow range.

It is the inactive 25D precursor that is the type of vitamin D that is usually measured by most doctors. This has led to some misunderstandings. Many doctors rely on the 25D precursor to decide how much vitamin D is needed, without paying enough attention to the active hormonal form, 1,25D, which is really more important, especially in Th1 disease.

So, now we move on to Fig. 2b, depicting a person with Th1 disease (http://synergyhn.com/Figures). This is where vitamin D is not tightly regulated through the kidneys. Figure 2b shows the situation in which activated infected macrophages can cause unregulated production of 1,25D in Th1 illness. This is well-known and accepted as occurring in sarcoidosis. It is in all the medical textbooks.

With sarcoidosis, the 1,25D blood levels can get very high. This is partly due to the bacteria being concentrated in the lungs where there is a lot of blood flow. This good blood circulation in the lungs means the 1,25D will more easily reach the blood in the veins, where blood samples are taken and thus is more easily detected. This is not as true in all these Th1 diseases. In some cases the 1,25D elevation is more hidden because in areas of less blood circulation, the 1,25D will be more likely to stay in local areas and not reach a blood sample taken for a test.

I am also using Figure 2b to illustrate the over stimulation of the macrophages to produce 1,25 D and excessive inflammation. Then I will go through the three parts of the protocol to show how the MP helps improve the situation.

So, here we have another activated macrophage that has some clusters of CWD bacteria sitting inside. The macrophage wants to digest them, but the CWD have figured out how to thrive inside our cells — it seems that they build an exoskeleton to protect themselves. This situation of CWD bacteria infecting them causes the macrophage to stay continually activated. When the macrophage is activated, it converts the vitamin D precursor, 25D, to the hormonal form of vitamin D, 1,25D. And the macrophage also produces inflammation-promoting chemicals, like Interferon gamma. The more 1,25D and Interferon gamma produced, the more macrophage activation occurs leading to more macrophages and more inflammation in a vicious cycle. It gets out of control and benefits the bacteria and not the patient.

Angiotensin II, in Figure 2b, on the left, is another substance that increases the Th1 immune response and macrophage activation. In many sarcoidosis patients, it is known to be elevated.

So, now we have the disease process components in Figure 2b with the 25D and the Angiotensin II causing the macrophage to produce 1,25D and inflammatory chemicals. These substances further increase the numbers of activated macrophages. Now, we add in the MP components.

You can see step number 1 (http://synergyhn.com/Figures): we help reduce the vicious cycle by reducing the precursor 25D. We do this by reducing vitamin D in food and from the sun to cut off the fuel supply for the macrophage’s production of 1,25D.

And for number 2, we add an angiotensin receptor blocker (ARB) called Benicar. It must reach a lot of inflamed tissues and thus requires higher doses than usual. For complex reasons, this particular drug works much better than any of the other drugs of its general type. It is quite safe according to the research, and in fact, it reduces the risk of a number of diseases and has a number of protective anti-inflammatory effects.

So, with the first two components of the MP, we have slowed the Th1 inflammatory cycle and helped reduce the 1,25D hormone.

Now, for number 3, at the bottom, once we have done the first 2 components of the MP, it turns out that even very low doses of certain carefully-chosen antibiotics can kill or weaken the CWD bacteria. The antibiotics work together with the help of the now much more normalized immune system to gradually kill off the bacteria.

What we are finding on the Marshall Protocol, particularly for those of us chronic Lyme disease and chronic fatigue syndrome, is what most of us knew all along. Most of us are very sick! Our body is really loaded with these bacteria. And, in fact, because we don’t have our vital organs affected quite as severely, like in sarcoidosis, we may be able to get a heavier total body load. This is because if a person with sarcoidosis had a similar total body load of bacteria to produce the level of fatigue some of us have, they would be dead already, because it would have gotten to their lungs and they wouldn’t have been able to breath or it might have gotten to their heart.

So, the people with CFS, FM and Lyme disease are sometimes surprised how much bacterial killing they have to do, because their bodies are so loaded with bacteria. And our immune system has failed to kill them and instead the bacteria have just been increasing over time. And so it should not be surprising that it takes a long time of gradually killing these bacteria to get well. It must be done slowly because of the Herxheimer reaction, discussed below. The more experience I have of the MP and the more I study it, the more I believe Dr. Marshall is correct in his analysis of the situation and his treatment approach.

Part 2. Patient Tutorial

Now, I was going to show part of a DVD from the international conference on the Marshall Protocol held last March in Chicago (http://AutoimmunityResearch.org). I really recommend obtaining the entire 3 DVD set of the conference from the MP sites. There is really a lot of fascinating and useful information on it.

What I was going to show was from the Patient Tutorial. But since the DVD player isn’t working, I will just summarize the main points. In any case, all the information is on the MP web sites. Anyone who tries to go on the MP, should probably spend at least a few weeks studying these free web sites (particularly http://marshallprotocol.com).

Dr. Marshall was actually diagnosed with lung disease that was later confirmed to be sarcoidosis when he was at a university in Australia and he was told he probably didn’t have long to live. And so, he decided to switch his major from engineering to biomedicine. It turned out he did manage to live for quite a long time and he did research on cryptorchidism and diabetes and obtained his Ph.D. There was a period of time when he became very involved in the development of the Internet and published in that area. Then, at one point, he took a sabbatical and focused on researching sarcoidosis and that is when he made discoveries that led to this protocol and his recovery from sarcoidosis.

Now we will discuss the Marshall Protocol. First, it is important to know that the 1,25D hormone, the active form of vitamin D, has connections to a lot of different hormones in your body and there is a diagram on the MP site that shows the connections (http://marshallprotocol.com/hormones.pdf). They have found receptors for 1,25D on bone, muscle, placenta, skin, and 1,25D also directly or indirectly affects the insulin receptors, the pituitary, the thyroid, the parathyroid, ACTH, cortisol and sex hormones. The point of this is to help you realize that when you bring your 1,25D levels down, you can go through an adjustment period, as various hormones must readjust. And some people have a lot of relief of symptoms as soon as they start lowering 1,25D, while others might experience some symptoms for a few days or a week while their hormones are adjusting to the change.

The list of Th1 diseases, besides what we have already mentioned, includes Type 1 and Type II diabetes, Parkinson’s disease, rheumatoid arthritis, multiple sclerosis, Crohn’s disease, amyotrophic lateral sclerosis, psoriasis, lupus, Sjogren’s disease and the list goes on and on. Like I said, there are so many diseases with chronic inflammation and scientists don’t know what causes the inflammation. Well, more and more people with these various diagnoses are trying the Marshall Protocol. Most with these other diseases have not been on the protocol long enough to get well, but by their reactions to the MP, they fit the picture of a Th1 disease. And a lot of their vitamin D tests fit the picture.

There are many symptoms of elevated 1,25D, which we also refer to as hypervitaminosis D, that can be listed, including many things like fatigue, muscle cramps, insomnia, muscle weakness, and paresthesias, which are tingly or numb feelings. Someone even said their depression lifted after just a couple of weeks of avoiding D and bright light. I felt better and tended to sleep better when I began avoiding D (it should be noted, however, that some people’s immune system may begin killing bacteria when they lower D, and thus they may feel worse at the beginning, just from that).

The vitamin D metabolite tests you should get are 25D and 1,25D. People don’t tend to have much trouble getting these tests covered by medical insurance, especially if there is the least suspicion or risk of osteoporosis. The 25D form is stored in the fat and it takes anywhere from 2 to 4 months to decline to half the original blood level. So, it does take a while to bring down the 25D and the time it takes varies among individuals. You can test periodically once you begin the protocol and the web sites give you some guidelines for that. Also, when you have been on the MP for a while, you want to watch that the 1,25D doesn’t go too low, so that is another reason to test.

As has been mentioned, one of the main components of the MP is avoiding light, especially near the beginning of the protocol. This includes a number of things that you do in your house, like pulling the drapes. Some people do things like tinting windows and there are all sorts of things people do depending on the circumstances and their particular house. Some use dimmer switches on their light switches. You should avoid fluorescent lighting.

When you go outside it is better to wear medium to heavy weight darker clothing, or you may use a couple layers. You can hold clothing up to the light and if you can see a lot of light through it, you know it isn’t blocking light well enough.

And you have to wear the right kind of sunglasses, called NoIR sunglasses. It turns out your eyes have a renin-angiotensin system and when light hits your eye, it appears that it produces 1,25D. Or it may be a neurological effect. Whatever the mechanism, a lot of people feel significant relief from symptoms when they wear the NoIR sunglasses and it is an essential part of the MP. I’m not wearing my sunglasses today, because my 1,25-D has come down a lot and I’m not as light sensitive now. But I still always wear them in front of the computer screen, because I find it to be too bright, even with the brightness turned down (sometimes making the background darker can help too). You should also wear the NoIR sunglasses when watching television.

One thing that is fortunate is that ketoconazole cream, also called Nizoral cream, is able to block the conversion of 25D to 1,25D in the skin. It just takes a small amount of this anti-fungal drug to do this. So, you can get this prescription cream and put it on your face and you don’t have to worry about trying to cover your face when you have to go out in the daytime (however, for some very light sensitive people, ketoconozale cream may not be adequate — for update and information on zinc oxide, see MP News).

You also have to avoid ingested vitamin D, so there are some foods you have to avoid, like fish, fish oil, eggs, supplements that contain vitamin D, like multivitamins, and many calcium supplements that include vitamin D. You can get the details about the foods to avoid on the MP web sites. If you can’t get enough of certain essential nutrients from your diet or have a documented deficiency, you can supplement with individual nutrients. I personally use mostly Solgar products (though I also use Vitaline, Nutricology and Natrol brands and some other brands for some supplements), since my nutrient intake is inadequate due to having a very limited diet due to many food allergies (Solgar also has a Chelated Calcium without D). If you take supplements, you should probably try to use only high quality hypoallergenic brands, which are less likely to be contaminated with hidden, unlabelled vitamin D (for the list of supplements I take, see http://synergyhn.com/supp).

Dr. Marshall also recommends that you not take any additional supplemental folic acid, because if you eat a healthy, well-balanced diet, you will usually get enough folic acid. And folic acid is something the bacteria really like. They use it in their metabolism.

About the Benicar that you take, it has to be taken 40 mg every 6 to 8 hours (or in some cases, after trying other options, 20 mg every 6 hours may be tried and seems to work better for some people). It is usually taken even more frequently if you find you really have to be out in the sun or if you have a particularly bad bacterial die-off reaction. According to Dr. Marshall, it is generally best to start out at the full dose of Benicar, unless the doctor insists you have to start slowly and ramp it up. There is no advantage in increasing it gradually and it will probably actually make it harder for you to adjust.

Minocycline is the antibiotic used in Phase One and it is introduced after you have become adjusted to Benicar, usually after about a week. Before Dr. Marshall’s protocol, a study by Bachelez et al (Arch Dermatol. 2001 137(1), 69-73) also found minocycline to help induce remissions in sarcoidosis. Many of you may know that minocycline has been approved for use in rheumatoid arthritis (see MP Overview article in Issue 7, http://synergyhn.com/mp). However, there are a number of differences in how they use it compared to the MP.

As a Lyme support group, most of you know about Herxheimer reactions, but I will review a little about them. Herxheimer reactions can occur in a variety of illnesses and one of the first situations where this was observed was when they used to treat syphilis with mercury, hundreds of years ago. What happens in a Herxheimer, or Jarisch-Herxheimer reaction (JHR), is that there is a flare up of symptoms because the antibiotics kill bacteria and the bacteria release endotoxins and initiate the production of cytokines, like Interferon gamma that cause inflammation.

Unfortunately, it appears that in order to get rid of the bacteria, the Herxheimer reaction is necessary and we have to go through these exacerbations. We also call it Herx for short. So, it is important to become very familiar with Herxheimer reactions, and you can read a lot about them on the MP web sites.

Of particular concern are cardiac Herxes, but if you read the precautions on how to deal with them, they can be handled. Sometimes your heart may speed up or slow down and usually taking Benicar more frequently takes care of it and/or you can adjust the antibiotic dosing. No one has died from this reaction. There have been a couple people who went to the emergency room just to be on the safe side. If you get worried, you can call your doctor or go to the emergency room, but we haven’t had any situations where any real harm occurred. But it is always wise to be very cautious when it comes to cardiac reactions.

That finishes the part covering what I was going to show you from the Patient Tutorial, from the Conference DVD.

Part 3. Questions and Answers: Some Frequently Asked Questions

Now, before going to your questions, I’m going to cover a number of odds and ends of things that people often wonder about.

1. Question. Some people hear of someone who has had a rough time on the MP and ask how do I know the MP is really just causing strong Herx reactions and not harmful drug allergies or side effects.

Answer. The key to the answer is the pattern of reaction. With allergies and toxic side effects, the reaction get worse each time you are exposed. With the Herx reaction from the minocycline, the reactions get less over time and the patient feels better over the course of treatment. This would not be the case if the reactions were side effects or drug allergies.

The interaction between the immune modulation of the Marshall Protocol increases your immune system’s ability to help make the antibiotic work to cause a Herx reaction. It is essential to learn to treat even small doses with great respect, when it comes to the Herx. The initial dose in Phase One for minocycline is only 25 mg. Believe me, I got a bigger Herx from 25 mg on the MP, then I did from 200 mg minocycline when not no the MP. In fact, even at 3 mg minocycline, I got a big Herx (see http://synergyhn.com/slowmp for my positive experience starting at very low doses).

2. Question. I have heard of someone who tried the MP and quit because it was too hard. Will I be able to tolerate it?

Answer. From experience with many patients over several years, they have found a number of reasons why some people don’t succeed with the MP. I made a list of things that I gathered from my reading of the MP board as the main problems– I list them in my article in Issue 7 (https://synergyhn.wordpress.com/mp) and I suggest you look at them. You might also refer to a link that I list from the MP site called “Do I have what it takes to do the MP?” Most of these errors can be avoided by carefully studying the protocol on the web sites and being committed to following it carefully– one must particularly study the Phase One Protocol document –see Easy Finder: ABC’s of the MP, see http://synergyhn.com/mplinks or handout). And I believe it is especially important to go slowly and increase the doses only very gradually.

If you go too fast, you can very easily feel lousy all the time, because you are herxing too much all at once. The pace is ultimately up to you and your doctor. Sometimes, instead of every other day doses of minocycline, you can do it every 3rd day, for instance. Or sometimes if I have something I need to do, I might even wait an extra day, and take the next dose on the 4th day. At least with this protocol, you usually have more control over your Herxing. At times, I even take a week off if I have a trip or something. Taking a break can be great for one’s morale, because during these breaks you can often really appreciate the progress you’re making.

I personally, have had relatively little problem with the Herxes. I believe this is partly because I have taken it quite slowly and carefully. In fact, instead of increasing by increments of ¼ tablet at a time of minocycline, which is the recommended amount to increase minocycline, I tend to increase only about 1/8 of a capsule or tablet at a time. It has also helped me to carefully follow the guidelines for light and vitamin D reduction.

There are also a variety of ways of dealing with too much Herxing, and that is something you should read about in the “Required Reading” on the MP site (http://marshallprotocol.com). And also, you should take advantage of the great free resource of the online discussion groups on the MP web sites and ask for help if you are having problems. You will usually get an answer within a few hours.

3. Question. Won’t all that Benicar lower my blood pressure too much?

Answer. Benicar does lower blood pressure a little (like by about 12 mm on the top number and 7 mm on the bottom, on average). In fact, this blood pressure effect is what Benicar is usually used for. For lowering blood pressure, it is usually given at 20 or 40 mg per day. On the MP, one must take 40 mg of plain Benicar every 6 or 8 hours. However, in a recent development, Dr. Marshall has found that a small minority of patients do better at 20 mg every 6 hours.

Some people are afraid that taking the higher dose of Benicar will cause too low a blood pressure. It turns out that you can see from the drug companies package insert and the web sites that Benicar’s effect on blood pressure doesn’t increase significantly when you go above 40 mg. So, taking 160 mg will not lower your blood pressure more than 40 mg will. You should be sure to get plain Benicar, not one with a diuretic added. This is very important.

By the way, my blood pressure was hardly affected at all by 160 mg/day of Benicar. My blood pressure was fairly low pre-MP and I did fine.

Experience has shown that the lightheadedness people sometimes experience on the MP is due to the Herx reaction or the disease process, not the Benicar. One staff member, Meg Mangin, who is a nurse, gives an example of her blood pressure, which is amazingly low, even now, only 70/52. Yet she is now mostly recovered after being on the MP for over 2 years. She is never lightheaded now even with a blood pressure of 70/52 and she is still on Benicar.

I personally find I am much more prone to feeling lightheaded when I have a food allergy reaction. So, it has been very helpful that I have reduced my food reactions. It is also a good idea to make sure you get 8 glasses of water a day and adequate salt to stay well-hydrated.

You may feel worse if you take less than the full dose of Benicar recommended by the MP, or take it only once per day. When taken once a day, some people with sarcoidosis have had very strange reactions to it. That is actually what first made Dr. Marshall realize that these angiotensin receptor blockers have a different and profound effect on Th1 disease. He then found that if it was taken at a higher dose spread out throughout the day, it had a very positive effect. All this led to his discovery of Benicar’s interaction with the immune system and the disease process.

Some people feel better when they start Benicar (after the initial adjustment period). There is a minority who feel worse after they begin it, and that is because it is allowing the immune system to begin killing the bacteria even before the antibiotic is added.

4. Question. Do people always feel better on Benicar or when their vitamin D is lowered and they are avoiding sun exposure? What if I don’t fit that picture?

Answer. People are quite varied in the state of their immune system and so there also is a lot of variation in response to lowering vitamin D and beginning Benicar. Some feel better fairly soon when they lower vitamin D and begin Benicar. However, there is sometimes a hormonal adjustment period for a few days when you begin Benicar, as vitamin D is lowered.

Also, some people’s immune system begins killing bacteria when they lower D or start Benicar, even before they add antibiotic. In this case, they may need to adjust for an even longer period before adding the antibiotics (see MP required reading for more options or http://synergyhn.com/mplinks).

There has been at least one case where a patient just could not start the Benicar, the Herx reactions were too strong. This person went on minocycline only on alternate days for quite a few months and lowered the bacterial load and then was finally able to go on the full MP with the Benicar. But this is very rarely necessary. There are also other strategies for dealing with this situation — and you can consult the MP web sites for more details.

People also differ in their sensitivity to sun or bright light. Some people already know they are sensitive to light before the MP. Others only discover a sensitivity to light when they have begun the MP. It seems that once you get your level down to a certain range, then you start noticing the variation and you often start realizing you feel better when indoors. Others don’t notice it too much even then, but you should still follow the instructions on avoiding vitamin D and light. Even on cloudy days, you still have to be just as careful and take the same precautions.

The reason you have to wear these special glasses, the NoIRs, is that even infrared (IR) light affects you. It may not affect healthy people, but experience shows it does affect the Th1 patients. In fact, even infrared saunas are advised against for those on the MP. Dry saunas can be used or others that don’t involve infrared light. But one should be careful about saunas on the MP because anything that increases your body temperature, may increase the level of Herxing. That may be a good thing with some protocols, but you have to be more careful on the MP, because it is not hard to get a good Herx on the MP, rather it becomes easy to get more Herx than you want at times.

5. Question. What if I have my vitamin D tests done and they come back normal, yet I otherwise fit the clinical picture for Th1 disease. How is that situation interpreted?

Answer. It now appears that even people with normal vitamin D levels, who fit the clinical picture or have one of the Th1 diagnoses usually respond to the Marshall Protocol in basically the same way as those with the elevated 1,25D or an elevated D ratio.

The vitamin D levels are useful in helping identify people with 1,25D dysregulation, but no test is perfect. However, the D levels often give an idea of how severe your condition is and help in the diagnosis. If 25D levels are very high, they may reduce the ability of the MP to kill the bacteria.

If your tests are normal, the thing to do to find out if you are a good candidate for the MP is a therapeutic probe. A therapeutic probe is basically a trial of a treatment, in this case a trial of the MP. People who do not have Th1 disease would not have any significant effect from following the MP. No Herx would occur, only a barely noticeable blood pressure decrease.

On the other hand, if you are affected, positively or negatively, from beginning the MP, there is a high likelihood that you have Th1 disease and are a good candidate for the MP. For instance, if you feel much better when you start Benicar, or you have a Herx reaction from the low doses of minocycline combined with the Benicar and lowered D, that is considered to be fairly strong confirmation of Th1 disease.

People who are basically recovered from their disease through using the MP, no longer react to the 3 components of the MP. Dr. Marshall, himself, who is the person who has been on the protocol longest, rarely ever has any Herx to even the triple combinations of antibiotics used in Phase III and can have some sun exposure and consume vitamin D containing foods like fish, with no problems.

6. Question. What about studies that say most people with many of these illnesses are already deficient in vitamin D and need more vitamin D or sunlight to prevent osteoporosis?

Answer. These studies are usually only looking at the inactive precursor, 25D. Testing 25D alone is not adequate, especially in Th1 diseases. In fact, sometimes, in Th1 disease the 25D is especially low, because your body has been so busy converting it into the active 1,25D form. Thus, sometimes the inactive 25D that is measured is quite low, while the active form may be normal or even quite high. In this situation, taking more vitamin D would not be a good idea from the point of view of the MP.

The 3 studies that are the most revealing and important on vitamin D in relation to Th1 disease were done on rheumatoid arthritis and are listed below. Rheumatoid arthritis seems to be a fairly typical Th1 disease caused by CWD bacteria.

These studies show that there is excessive production of 1,25D in inflamed joints of rheumatoid arthritis patients, just like in sarcoidosis lung tissue (Mawer, 1991). Dr. Marshall believe this is likely to be the case in Lyme disease and other Th1 diseases, as well. Furthermore, this 1,25D production does not always show up in higher 1,25D blood levels, but it is causing inflammatory damage to the joint. The study by Sambrook et al (1990) is especially revealing. They found that almost all the rheumatoid arthritis patients they followed for two years lost significant amounts of bone near the wrist joint, except for 3 patients. These 3 patients, who maintained their bone, had very low blood levels of 1,25D.

During the MP, the levels of the active 1,25D are kept in the range that will maintain your bones, especially if you have a reasonable amount of calcium in your diet (or take a supplement if you don’t have adequate dietary sources, see http://synergyhn.com/supp). In fact, it is well known that too high a level of 1,25D will lead to bone loss. This probably contributes to osteoporosis in Th1 diseases. According to Dr. Marshall, by going on the MP and bringing down the elevated 1,25D levels, you will be better able to maintain bone density, especially near areas of inflammation, where bone loss is more likely. Inaba et al (1997) shows that inflammatory chemicals associated with increased disease activity and bone loss were higher when the levels of 1,25D in the joint were higher.

In further confirmation of the studies that I have referred to, Dr. Marshall and the other long term sarcoidosis patients have had no problems with fractures from lowering their 1,25D over several years.

Important articles on Vitamin D for skeptics showing how D dysregulation can be hard to detect but still can be important (shows local 1,25 D levels may be elevated to harmful levels, despite average 1,25D levels in blood):

Mawer, EB; Hayes, ME; Still, PE; Davies, M; Lumb, GA; Palit, J; Holt, PJ. Evidence for nonrenal synthesis of 1,25-dihydroxyvitamin D in patients with inflammatory arthritis. J Bone Miner Res. 1991 6(7), 733-9. This study found that despite low levels of 25D and normal levels of 1,25D in a British population with rheumatoid arthritis (RA), that if given 25D, there was production of 1,25D in the joints of the RA patients by the macrophages, just as in sarcoidosis. If the patient was given a large dose of vitamin D, their serum levels went up much more than the controls. On the MP, there is a rheumatoid arthritis patient who was on vitamin D before the MP and got worse on it. She is now considerably better after a year on the MP with restriction of vitamin D.

Inaba, M; Yukioka, K; Furumitsu, Y; Murano, M; Goto, H; Nishizawa, Y; Morii, H. Positive correlation between levels of IL-1 or IL-2 and 1,25(OH)2D/25-OH-D-ratio in synovial fluid of patients with rheumatoid arthritis. Life Sci 1997 61(10), 977-85. This paper shows that inflammatory chemicals associated with increased disease activity and bone loss were higher when the levels of 1,25D in the joint were higher.

Sambrook, PN; Shawe, D; Hesp, R; Zanelli, JM; Mitchell, R; Katz, D; Gumpel, JM; Ansell, BM; Reeve, J. Rapid periarticular bone loss in rheumatoid arthritis: Possible promotion by normal circulating concentrations of parathyroid hormone or calcitriol (1,25-dihydroxyvitamin D3). Arthritis Rheum. 1990 33(5), 615-22. This study followed RA patients and the majority lost bone near their wrist joint over 2 years. The 3 patients who lost almost no bone were the ones with very low 1,25D.

For a review of these and other studies, see: Waterhouse JC, Marshall TG, Fenter B, Mangin M, Blaney G: Vitamin D Metabolism in Chronic Disease. In Vitamin D: New Research, New York: Nova Science Publishers; in press.

7. Question. What about some of the studies linking low vitamin D to cancer, diabetes, multiple sclerosis etc…?

Answer. Some of these studies are measuring the wrong type of vitamin D, the 25D precursor. Other studies are epidemiological or correlational studies. These types of studies are difficult to interpret. Many of them draw conclusions based on geography, saying that since there is more people with a certain disease far from the equator, then it is probably due to lack of vitamin D from less sunlight. But there are other possible interpretations. For instance, an analysis by Fritzsche (Med Hypoth. 2005 64(3), 438-48). explained the geographic patterns for MS by patterns of tick borne disease related to bird migration. Also, in cold climates, people may spend more time indoors and have more chances of catching other bacteria as well. And cancer has been increasingly linked to pathogens and inflammation. For more details, see Waterhouse et al (cited above).

8. Question. Where can I find statistics on the success rate of the MP?

Answer. At present, Dr. Marshall is focusing on seeking funding from the NIH and other sources, going to meetings, doing research and talking to doctors who call him and many other things. He is gathering information on people on the MP, but with all the other demands, all the many diagnoses, he has not yet gotten to the point of compiling data. He needs to obtain research funding in order to do that (and if anyone has an inside track on obtaining funding, that would be welcome). A large proportion of people are responding to the MP as expected, but many of the people with non sarcoidosis diagnoses have not been on the protocol long enough to be cured. I know we would all like to see statistics, but for now, we must be satisfied with studying the site, seeing people’s progress reports and success stories and assessing for ourselves how people seem to be doing, and in general, deciding if the science backing it up seems convincing.

9. Question. How can you live without sunlight? Isn’t it depressing? Can you still work?

Answer. Most people who are currently working are able to continue to work while on the MP. They usually can figure out ways to avoid light sufficiently. I don’t find it depressing, myself. Many of us feel better once we get through the hormonal adjustments that may come when we first start avoiding light. Some even report a variety of neurological symptoms, including depression, improving soon after they lower their D levels and light exposure. You simply acquire new habits and after a while, you don’t think much about it. After a certain length of time on the MP, you can start loosening light restrictions.

The light avoidance is most important for the first 6 to 18 months, and we figure it is a small price to pay to get well. Those who are very sick usually find they have to be more strict about light than others. Many adapt by shifting some of their activities to times when it is dark outside. Some have even found ways to do there gardening after dark by special lighting arrangements. But when going out in the day time is necessary, a lot can be managed with the proper clothing and the help of the ketoconazole cream that blocks 1,25D production.

10. Question. Some people may hear that Dr. Cheney, a well-known CFS doctor has concerns about Benicar at this higher than usual dose over several years. Should we be worried about that?

Answer. I would say, look at all the studies with high doses of Benicar or other similar angiotensin receptor blockers (see http://synergyhn.com/mplinks or handout for links to that information on the MP site). Consider the experience of Dr. Marshall, who has studied it in much greater depth in relation to Th1 disease than anyone else. And consider that Dr. Marshall and many others have been taking Benicar at high doses for 2 or 3 years and are getting healthier. It is just possible there may be some unknown subtle negative effect of the higher doses of Benicar. But on balance, those of us who decide to do the protocol weigh the definite benefit we experience against some theoretical subtle danger. And besides, the Benicar is not forever– just until you get well.

11. Question. What about other protocols that promise to immediately relieve symptoms? Why not use those instead? What if I feel better when I exercise or am in the sun or take vitamin D?

Answer. If one is convinced by Dr. Marshall’s view of the role of treatment resistant CWD bacteria, one must recognize that most quick fixes are likely to be counterproductive. Our bodies typically do at least a certain amount of bacterial killing and sometimes we find something that makes us feel better. But we must recognize that it may be making us feel better because it is suppressing the bacterial killing and the die-off reactions that go along with that. This is the reason that immune suppressing drugs make people with autoimmune diseases feel better.

It is also why some people feel better from taking vitamin D and staying out in the sun a lot. The vitamin D is suppressing the killing of the bacteria.

The immune suppression from high amounts of vitamin D is well known from many animal studies that are touted by those who favor giving a lot of vitamin D to patients. Dr. Marshall finds that those with high vitamin D levels or who have been on immune suppressing drugs have a harder and slower time, because their bacterial levels have built up.

Another example is exercising. Too much exercise may raise stress levels and also suppress bacterial killing. This may be one of the reasons that in the short term some believe exercise is helpful– it has reduced the Herx. But according to Dr. Marshall in the long term it is likely to be harmful. I believe it was harmful for me. During the first 6 to 8 years of my illness, I tried to exercise between relapses and I believe it did me more harm than good in the long run.

12. Question. What about new symptoms that appear when on the MP?

Answer. Sometimes new symptoms occur during the MP. These are believed to be due to subclinical inflammation. Thus, you might have a cardiac symptom, like an arrhythmia or faster heart rate, that you had not experienced prior to the MP. When these reactions have occurred, they have usually been quite successfully managed by increasing the Benicar or adjusting the antibiotics. We know that the bacteria can be in any organ or tissue, it just may require a die-off reaction to make the symptoms noticeable. What Dr. Marshall finds is that these symptoms arise as part of a Herx and then resolve as you kill off the bacteria in that organ. Killing the bacteria in an organ, like the heart, may then prevent you from getting heart disease later in life.

13. Question. What about negative rumors that a few people are spreading about censorship on the MP web sites?

Answer. I think part of the problems a few people have had may perhaps come from the evolution of the Marshall Protocol web site. Originally, it was a more free wheeling discussion group in which Dr. Marshall had more time to answer questions. Later, he had more demands on his time and he felt they had to make the web sites more targeted toward helping people use the protocol. This led to limiting the posts on the sites to things that the staff thinks will be helpful and accurate for people trying to use the protocol. They became concerned that people with brain fog who are struggling to grasp a lot of material would be misled and confused to the point that it might lead them to do the protocol incorrectly, unless a certain level of control was maintained over the postings.

Also, Dr. Marshall has continually become more busy with doing research, attending conferences, going to Washington D.C. to meet with FDA and NIH officials, writing articles and grant proposals, answering phone calls from physicians and other things, and has had much less time to try to discuss a wide variety of highly technical issues with patients. He is still quite open to discussing these technical issues with qualified researchers and doctors. But he feels that the MP web sites are no longer appropriate places for these sorts of discussions.

14. Question. Why aren’t Phases Two and Three available for the general public to read?

Answer. The antibiotics used in Phase Two and Three are quite powerful when used in the MP and the MP staff want patients to learn the basics first. They are afraid that people might be confused and have a dangerous reaction. The Phase Two and Three protocols are available to any doctor and are available to patients when they approach the end of Phase One and demonstrate they have mastered and followed the basics of the MP. So, you focus on learning Phase One thoroughly and then when you finish Phase One, you fill out a questionnaire through the web site, to make sure you understand it thoroughly and then they send you the Phase Two and Three protocols. Phase One usually lasts at least 3 month, but may last 4 to 6 months, depending on the person.

 
Part 4. Questions From the Audience and Their Answers

Now, on to questions from the audience:

Question. What is the type of Benicar that is required?

Answer. It has to be just plain Benicar, 40 mg. Be sure it doesn’t have a diuretic added. The 40 mg tablets have C-15 stamped on them.

Question. What about if you have psoriasis and you are told to put vitamin D cream on your skin?

Answer. There are several people on the MP who have psoriasis and they avoid vitamin D. So, they would say that the topical vitamin D cream is really not the way to treat psoriasis. It is probably acting to suppress the Herxheimer reaction associated with killing the bacteria and that is probably why it seems to work in the short term. But in the long run, it is not the solution, at least not according to the point of view of the MP. People are finding their psoriasis is getting better on the MP.

Question. How do we find a doctor who will prescribe the drugs for the MP?

Answer. You can try to convince your own doctor by providing information on the protocol from the web sites, including published studies. You can obtain through the MP site, a list of doctors who are treating with the MP in your state (wee list of links at: http://synergyhn.com/mplinks). You can also click on names on the MP sites of people on the MP who are in your area and ask them who their doctor is.

Question. I have low blood pressure already, how could I convince my doctor to give me Benicar?

Answer. If your doctor looks at the references on it (for links to information, see handout or list of links at http://synergyhn.com/mplinks), your doctor will see it has many other effects. It has anti inflammatory properties and is protective in a lot of conditions. It seems like every month or so, there is a new study showing that Benicar, or another drug in its class, is able to protect people from organ damage, like in kidney disease or eye disease associated with diabetes. It is very protective. I already discussed that the small amount of blood pressure lowering has not been found to be a problem in the vast majority of those on the MP.

Question. Does minocycline reach the brain?

Answer. Yes. It is one of the best penetrating antibiotics out there.

Question. When do you start feeling better and what is the pattern of reaction like?

Answer. It’s like a cycle, you may feel better on the Benicar, then you feel worse after each dose of antibiotics and usually feel better in between. Very gradually there are more days when you feel better and the good days become even better and the bad days become less bad, and you are able to be more functional. You can picture a cycle of ups and downs, gradually sloping upward. You can’t be too impatient about it. The changes may be quite slow and keeping a journal may help you recall the changes. You can read about people’s experiences at the MP web sites. And people differ, so you shouldn’t get discouraged it you don’t follow the pattern I have just described.

Actually, the bacteria were probably growing inside you long before you were even very sick. And if you have had anything immune suppressing, like stress or drugs, it has probably helped the bacteria increase even more. So, you most likely have bacteria that have accumulated in your body for many years, and it will take a while to kill them all.

Question. What about what I heard from a doctor who said that too much Herx is bad, that you should keep it at a low level to avoid permanent cell damage?

Answer. I think that a moderate level is perhaps what should be aimed for. If you have too small a Herx, you may not be killing much bacteria. The MP recommends trying for a level of Herx that you are comfortable with. I personally think some people go for too strong a Herx level. In my opinion, too strong a level of Herx might even over activate your immune system. I personally feel one should try to have a couple good days a week, even if that means waiting to take it until the third day, or keeping the dose at a certain level longer. I think some people try to rush it too much. It has worked for me to do it the slow way (http://synergyhn.com/slowmp).

Question. How long does the reaction last?

Answer. With the minocycline, it usually only lasts 2 or 3 days. And people have their peak reaction at different times. For example, I usually began to Herx about 2 hours after the minocycline and continued until around the 36 hour mark. Some people Herx more on the second day, while some may even Herx significantly on the third day.

Question. Can I exercise?

Answer. In general, Dr. Marshall recommends being careful about not exercising too much. For one thing, exercise can increase cortisol levels and may suppress your Herxing. Certain people can tolerate a certain amount of exercise. Also, once you begin Herxing, you may feel more tired and it may be better to allow your body to devote its energy supply to healing rather than to push yourself too hard by vigorous exercise.

Question. Can you start out by avoiding light and vitamin D for a while first, before starting the MP?

Answer. Yes. Some people do that while preparing to start the MP. My father’s case is an example of this. His heart arrhythmia settled down and his shortness of breath actually improved while he lowered his D levels and sun exposure for several months prior to starting the MP.

Question. Are there any negative effects of too low a vitamin D level?

Answer. In general, most people on the MP don’t reach a low enough level of 1,25 D to experience negative effects. But one possibility, if 1,25D gets very low, is an increase in muscle weakness. Of course, one can also feel weak from Herxing. You monitor the 1,25D levels periodically and you can verify if muscle weakness might be occurring due to 1,25D being too low. But this is rarely, if ever, a problem.

In my case, my 1,25D started at 63 pg/ml and after 6 months came down to 22 pg/ml. At about a year, my 1,25D was down to 12 pg/ml. Now, that level is getting down to a pretty low level, but it hasn’t caused a problem for me. But because it is low, I can increase the light exposure and ingested vitamin D from diet some. I could eat fish if I wanted too, for example. I am also able to let more light into my house and tolerate indoor lights more.

However, I still find that my heart rate goes up if I expose my skin to the sun for even 5 minutes. Other people might have a different reaction, but for myself, my heart rate is affected and I become more fatigued and stressed feeling with direct sun exposure.

Question. What about people who are really sensitive to medications? Can they tolerate Benicar?

Answer. Most people tolerate Benicar quite well, in fact many people feel better while taking it. Also, for someone who is very sensitive to everything, they might try what I did. By reducing my food sensitivities, my overall sensitivity level declined. This was all prior to the MP. At one point, I was so sensitive, I couldn’t even tolerate the gelatin capsules that supplements and medications come in, but that improved when I reduced my food allergy exposures (see Issues 5, Issue 8 and Issue 10).

Question. What about other things like herbs and natural antibiotics? Can I use those instead of the pharmaceuticals in the MP?

Answer. It took a long time to figure out this particular combination of drugs and Dr. Marshall knows how it works. And it would be highly unlikely that any of these natural products could do the job. With a lot of these other things, there is not all that precise an understanding of how they work. And the Benicar happens to hit just the right receptors. It is very unlikely that an herb is going to do that. And the same thing goes for the antibiotics. They are carefully chosen ones that have the most effect on CWD and the least side effects.

Question. If I wanted to take an immune boosting herb like astragalus, could I do that?

Answer. Dr. Marshall would strongly discourage that, because for one thing it has been found that sometimes supplements may contain vitamin D without putting it on the label, either naturally because it happens to be in the plant, or even added vitamin D. There is a study where they found some people had excessive vitamin D and it was apparently coming from some supplements they were taking, that had vitamin D added to them that wasn’t on the label (Adams et al. Ann Intern Med. 1997 127, 203-206 ).

And anything that affects your immune system could interact in a negative way with the protocol. So, Dr. Marshall really discourages anyone taking herbs like that. It is generally best to keep it simple and not mix in other things. He has found this works, and besides it saves you money.

Occasionally, someone will say they think Dr. Marshall is somewhat rigid about wanting people to follow the protocol exactly. I look at it this way. Dr. Marshall had very severe sarcoidosis and was told he probably would not live long. He has struggled on, studying the illness for many years. He has gotten well and watched many people get well using the protocol he developed, following it in a precise way. He has also had friends die because they were unable to follow the protocol exactly. So, you can imagine, he would feel pretty strongly about the need to do the protocol in the way that has worked and not do things that might interfere with it.

Question. For Lyme Disease, what are the statistics?

Answer. The person who has been on the protocol the longest who has Lyme Disease has been on it about 15 months or so. She’s doing really great. She spent years on IV antibiotics before the MP and now she really believes the MP is the better way to go. But she still has a ways to go on it. And now we have more and more people with Lyme getting to the 12 and 14 month mark. So, before too long, we should get to the point where we have more cases to judge by.

Question. Are some people on the MP just Herxing and not getting any improvement?

Answer. Well, there are a few like that, but in some of the cases, they haven’t been following the protocol with regard to their light exposure. The more 25D and 1,25D you have, the harder it is to keep the inflammation down. Or in my opinion, some are trying to go a bit too fast and are not taking breaks in order to experience the improvement they may have made. There are a couple cases I know of where we are not quite sure what the problem might be. It may just be that it is a certain phase they are in and it just may take them longer. I’m not saying there are any guarantees. We don’t have clear statistics yet. It should be kept in mind that the people that post more frequently are often more likely to be the one’s having more difficulties. But, to balance that, you can go to the link with Success Stories (for links to information, see handout or links at http://synergyhn.com/slowmp).

Question. How many people do you know personally who have had some improvement in their Lyme disease?

Answer. With Lyme diagnoses, offhand I would estimate around 10 or 12, that I know of myself, who say they are doing well or improving, but it is hard to judge and not everyone posts their progress on the web site. But I have not done a careful survey, or anything

Note: This last question is not about the MP.

Question. What is the pulse test for food reactions?

Answer. There are two types. The short cut test, which I find can be especially useful, is done as follows. You take your pulse for a minute, two or three times within a few minutes, to get a baseline rate. And then you put a small amount of a food or supplement on or under your tongue. You wait 2 minutes and take your pulse again. Usually, the more your pulse goes up the more sensitive you are to the food. Right after the test, you spit out the food, especially if you reacted to it, so you don’t have to go through the days of reaction during which your body is trying to get rid of it. If you are prone to dangerous allergic reactions you should only do this type of test in a medical setting (see Cautions — Updated).

For more severe allergies/sensitivities, it will usually pick up the reaction any time. But for milder allergies, it will be a more sensitive test and will identify the reaction more easily, if you do it during the withdrawal phase. For example, if you ate your last meal of wheat last night, you might test it the next morning, about 12 hours after you last ate it and then retest it every 12 hours for several days. Sometimes, with a mild reaction, you might only get a pulse increase on the short cut pulse test at the 36 hour or 48 hour mark. I had one food that only would react after 4 days. But in most cases, you will pick up the more subtle reaction in the first 36 hours after stopping the food. You can see my articles on it for more details.

Often, the reactive foods are your favorite foods, because when you eat them, you get a little adrenaline burst along with your increased heart rate. Often you may not realize your heart rate has increased after a meal, you just may feel a little better for an hour or so. With that situation, it is only natural that you would tend to crave the food, and this phenomenon can lead to overeating and weight gain.

Some people use muscle testing, but I think the pulse test is more objective and you can do it yourself at home for free. You can also do an elimination diet and just judge by symptoms changes without using the pulse test (see Issue 5 and Issue 10).

Editor’s Note: I have recently become affiliated with the Autoimmunity Research, Inc., a non-profit organization. I am doing some reviewing of the literature and writing on subjects related to the role of cell wall deficient bacterial forms, vitamin D dysregulation and the antibiotic approach being used to treat a variety of autoimmune and inflammatory diseases (aka the Marshall Protocol). I am doing this on a voluntary basis because of the benefit I have received from being on the Marshall Protocol and there is no financial connection involved. Opinions I express in CISRA’s Synergy Health Newsletter are still my own, and not that of Autoimmunity Research, Inc., or Dr. Marshall, unless indicated otherwise. I will also continue my independent inquiries, research and writing for CISRA on a variety of topics that I believe may benefit patients with chronic disease. J.C. Waterhouse, Ph.D.

Disclaimer: All articles provided on the SynergyHN website are for information only and are not intended as medical advice. An effort is made to be accurate, however readers are advised to verify what is presented here and check with their own doctors. No guarantee of accuracy is expressed or implied. Neither CISRA nor the author receives any funding or income from any organization or manufacturer connected with the topics discussed.

Written by synergyhn

October 28, 2006 at 11:22 pm

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