further exploration of high vit D cautions

[Guest guest]

This is a much easier explanation of the article Madeleen posted the link to for anyoneinterested in further exploration.Can't comment on what I think of this as I'm also doing well on higher doses of vit D but this is fuel for thought/LynnImmuneSupport.com Treatment & Research Information

A Journey Towards Complete Recovery from Chronic Fatigue Syndrome: The Story of My Progress on the Marshall Protocol

ImmuneSupport.com

07-25-2005 By Amy Proal

Amy Proal is a recent

graduate of town University with a B.A. degree in Biology. She

wrote her Senior Thesis on Chronic Fatigue Syndrome. Also a columnist

for Fibromyalgia AWARE Magazine, she writes often about her battle with

CFS and FMS.

Last year during the

Christmas holidays my body did not cooperate with my festive state of

mind. Instead of decorating the tree or taking a walk in the snow, I

found myself lying listlessly on the couch, suffering yet another

relapse of my worst CFS symptoms. A series of extensive blood tests

confirmed the fact that my body was far from functioning properly. At

only age 23, I had hormone levels lower than post-menopausal women.

Despite the fact that I was on four strong antifungal drugs, my

digestive system was overtaken by Candida. My stomach was barely able

to tolerate any food besides chicken and rice.

Since I've suffered from

severe CFS for at least three years, I wasn't surprised to find myself

nearly bedridden yet again. Luckily, my doctor is one of the top CFS

specialists in the country. I contacted him about my negative

circumstances, expecting him to adjust my supplements or pain

medicines. Instead, he wrote back a single sentence that has since

drastically altered my health and most likely my entire life. He urged

me to "try the Marshall Protocol."

Attached to the e-mail

was a list of instructions with the title "Phase 1 guidelines." I read

them slowly, realizing with growing excitement that a treatment called

the Marshall Protocol (MP) had been developed with the potential to

actually CURE my illness, not just mask my symptoms.

The MP, created by

researcher Trevor Marshall, Ph.D., is based on the idea that CFS and

many other chronic diseases (termed Th1 illnesses, including

fibromyalgia, lupus, and rheumatoid arthritis), are caused when certain

individuals accumulate large amounts of bacteria that have mutated and

lost their cell walls. Because of this mutation, antibiotics are unable

to kill them directly. Unlike other forms of bacteria, cell wall

deficient (CWD) bacteria have also developed the ability to remain

alive and proliferate undetected inside the very cells of the immune

system that the body uses to kill invading pathogens, allowing them to

generate a wide array of painful symptoms.

The MP was first created

to treat sarcoidosis, an illness from which Dr. Marshall himself

suffered. After making several key discoveries about CWD bacteria,

Marshall developed and fine-tuned a treatment plan aimed at slowly

killing these pathogens. In 2002 a group of sarcoidosis patients began

this novel course of therapy. Eventually, all of these first patients

on the Protocol obtained complete symptomatic remission and remain

healthy to this day. This marked the first time a group of patients has

ever recovered from sarcoidosis.

Once news spread that

the MP had successfully killed the strains of CWD bacteria involved in

causing sarcoidosis, several people with other Th1 illnesses believed

to be caused by different species of CWD bacteria decided to begin the

Protocol as well. Since the MP slowly kills CWD bacteria, patients

start to heal gradually over an extended period of time. The Protocol

takes from 1 year to 18 months to induce symptomatic remission.

However, once on the MP, patients begin to notice improvements little

by little.

As Dr. Marshall's

research team likes to say, "Healing creeps up on you, just like the

disease did." Due to the long recovery period, no patient with CFS or

any other Th1 illness besides sarcoidosis has been on the Protocol long

enough to fully recover. However, patients with other Th1 illnesses are

showing identical responses to the medicines used by the MP as the

original sarcoidosis patients who were cured, a very positive sign they

too will end up as healthy as the first group who finished the

Protocol.

The science behind the

MP is complex, but before I continue telling you my own story please

bear with me while I quickly describe a few basic concepts which help

explain how the medicines used by the MP are able to target CWD

bacteria. First, it is critical to realize that CWD bacteria are

strongly influenced by Vitamin D. The body obtains forms of this

vitamin from three sources: sunlight, artificial light that enters the

eye, and foods that contain Vitamin D. One of the most exciting aspects

of the MP is the fact that people who suspect they suffer from a Th1

illness can actually take a simple blood test which may suggest the

presence of CWD bacteria.

Marshall discovered that

once inside a cell, CWD bacteria activate an inflammatory pathway that

is responsible for generating many of the painful symptoms of Th1

diseases. One of the major molecules involved in this pathway is 1,25D,

an activated form of Vitamin D that functions as a hormone. Once inside

a cell, CWD bacteria convert the regular form of Vitamin D (termed 25D)

into 1,25D at a much higher rate than in healthy cells. Thus blood

tests reveal that patients with Th1 diseases tend to display much

higher levels of 1,25D than their healthy counterparts.

Marshall also came

across a drug called Benicar. Originally created to lower blood

pressure, it also has the ability to lower levels of 1,25D. Thus, when

patients take Benicar and also strive to lower Vitamin D levels by

avoiding sunlight and bright lights, they are able to effectively

disrupt the inflammatory pathway responsible for many of their painful

symptoms.

Once the inflammation

around a cell has been reduced, antibiotics are finally able to

penetrate the cellular environment and come in direct contact with CWD

bacteria inside. Although antibiotics are not able to kill the

pathogens directly, they are able to greatly weaken the bacteria by

blocking the production of bacterial proteins. This allows the body's

own immune system to recognize the weakened pathogens and finally kill

them.

Patients who begin the

MP start working to lower their 1,25D by taking Benicar every 6-8

hours, and eliminate all sources of Vitamin D from their diet. Next

they start Phase 1 by taking an antibiotic called minocycline every

other day. When patients reach Phases 2 and 3, other carefully selected

antibiotics are introduced in a similar fashion. A key element of the

MP is that antibiotics are taken every other day. This "pulsing" of

antibiotics allows levels of the drug in the body to dwindle to lower

concentrations where it becomes more effective at penetrating inflamed

cells.

It is very important to

understand that, as CWD bacteria die, they cause what is known as a

Herxheimer reaction, a situation fondly nicknamed "herx" by those of us

on the MP. The term refers to the fact that dying bacteria release

toxins into the bloodstream and generate temporary hormonal imbalances.

This means that once patients begin the MP, each dose of antibiotic

will cause them to feel bad for the period of time it takes their body

to deal with the consequences of dying CWD bacteria.

After contemplating the

biology and antibiotic regimen behind the MP, my head began to swim

with questions. I was immediately drawn to the fact that Marshall

viewed CFS as a chronic infection. From day one, I have had a strong

gut feeling that my illness is caused by a pathogen. Over and over I

have repeated this conviction to doctors who instead attributed my

symptoms to nutritional or hormonal imbalances. As the person who can

actually feel the extent of my pain, I know that my illness is the

result of something far more complex. The MP finally offers a rational

and logical explanation for my symptoms.

At first I was skeptical

about a few aspects of the Protocol. I wondered how it is possible that

Vitamin D plays such a crucial role in Th1 diseases. During the summer

I'm accustomed to spending hours by the pool, basking in the sun until

I develop a dark tan. It didn't seem to make sense that during periods

in the sun, I had usually started to feel slightly better. I decided to

log on to the Protocol's web site and see if it addressed my concern.

The site, dedicated to explaining and promoting the MP, is www.

marshallprotocol.com.

The site is divided into

several different forums, some of which offer direct information. One

of these forums contains a list of frequently asked questions. Within a

matter of minutes I found a question titled "But why do I feel better

during the summer?" My question exactly! I read a concise paragraph

explaining that most of our day-to-day symptoms result from toxins

released by a small amount of CWD bacteria that our immune system kills

on a regular basis.

However, once

strengthened by high levels of Vitamin D (which the body makes in

response to sunlight) CWD bacteria become too strong to be killed by

the immune system. Fewer toxins enter the bloodstream, and most people

begin to feel better. But during colder months, when Vitamin D levels

tend to drop, CWD bacteria become weaker. Our immune system is able to

kill a small number of the pathogens again, causing many people to

relapse and feel worse during the winter. This observation certainly

rang true in my case, explaining why now, around Christmas, I found

myself struggling to get out of bed. Once I started to understand the

interactions between CWD bacteria and Vitamin D, I became even further

convinced that Marshall's discoveries truly explained the progression

of my disease.

As I perused the forums

with growing excitement, it wasn't long before I realized the web site

is an almost unending source of helpful information. I became a member

of the site by filling out a small profile and choosing a member name.

As a member, I am able to post questions in several forums related to

different aspects of the MP. Questions are answered by one of several

moderators, some of whom are nurses. Other members are also able to

respond to posts in order to offer advice that stems from direct

personal experience.

I remember tentatively

posting my first question, and the surprise I felt to see it answered

in a matter of minutes by one of the moderators. I have yet to see a

question go unanswered, or even left without a response for more than a

few hours. Since that first day, I have written almost 140 posts.

In my case, it took only

a few hours on the web site to get a good idea of the MP. I was ready

to begin! In fact, I was so eager to start that I practically fell off

my chair trying to find my phone in order to call my doctor. However,

since I only had one month left before my college graduation, we

decided that I should wait to begin the medications until I was

finished with school. Nevertheless, I started to avoid light and remove

sources of Vitamin D from my diet.

I began adjusting my

apartment so that it would become what I refer to fondly as my "cave."

I put dark curtains over the windows to block sunlight from entering

the room. I bought low-watt bulbs and turned down the brightness on my

TV and computer monitor. And then.... I ordered my "shades." While on

the MP, it is important to wear a special type of sunglass made by a

company called Noir Medical. They are designed to block not only UV

light, but also infrared and bright lights.

Next, I consulted the MP

web site to learn which foods are "safe" to eat because they contain no

Vitamin D. The most important foods to avoid are fish, Vitamin

D-fortified milk, and eggs. Although removing these items from my diet

does impose limits on what I can consume, I find that it is very easy

to eat a wide variety of meals that do not contain these products.

In final preparation to

begin the MP, I stopped taking most of my medications, except for my

sex and thyroid hormone supplements. At first I wondered if stopping

most of my supplements was a good idea. However, I've realized that

taking Benicar as directed by the MP allows the immune and endocrine

systems to begin to readjust to a state of equilibrium. This means that

if a person eats a well-balanced diet, the body can once again

assimilate more than enough vitamins and minerals naturally. As I said

goodbye to my supplements, I realized that for the first time I would

be beginning a course of treatment that actually targets the CAUSE of

my illness.

All my previous

treatments had used supplements in order to merely placate my symptoms.

However, the medicines used by the MP work to target the actual source

of my pain.

I was amazed that after

only about a week of avoiding light and Vitamin D I started to feel

better. I had more energy. For the first time in years, I woke up to

find that my muscles felt relaxed rather than stiff and painful. I was

also happy to notice my constant cravings for carbohydrates and sugar

begin to dissipate. The day after graduation, I celebrated by taking my

first dose of Benicar.

Each patient who begins

the MP reacts differently to Benicar, since it can cause a variety of

hormonal adjustments as it begins to lower 1,25D. In my case, the

medication simply augmented the positive changes that had started to

occur in the previous month. My muscle pain literally disappeared. My

energy level grew so high that I practically paced back and forth

inside my apartment thinking up tasks that required movement.

By this point I had been

wearing my Noir glasses for several weeks. When they first arrived, I

had expected the frames to be incredibly bulky or unflattering. But I

was pleased to find that, although they are somewhat large, they looked

very much like a normal pair of sunglasses.

Getting the correct

glasses was very important in allowing me to progress on the MP. This

is because of the fact that, after starting Benicar, I became very

sensitive to light. A great number of Th1 patients experience this

photosensitivity as they begin to heal. My light sensitivity varied

depending on the day, but sometimes I found that even normal indoor

lighting or watching TV could make my eyes and head feel strained.

Thus, the Noir glasses were crucial (and remain crucial) in allowing me

to function comfortably around different sources of light.

Becoming light sensitive

required making several lifestyle adaptations. Although some may think

I viewed this reaction as a negative situation, I was actually happy to

note this change in my symptoms. In fact, reactions such as light

sensitivity bring me to discuss what I find to be one of the most

appealing aspects of the MP. This is the fact that people with Th1

illnesses react to the MP medicines in drastically different ways than

normal healthy individuals.

If I did not have CFS,

and if my CFS was not a result of CWD bacteria generating high levels

of 1,25D, then Benicar would not readjust my hormones in a way that

causes me to become light sensitive. Thus, my light sensitivity

confirms the fact that I do indeed suffer from a Th1 illness, and, most

importantly, that my disease is directly influenced by Vitamin D.

Another important sign

that confirmed that the antibiotics were indeed starting to weaken my

CWD bacteria occurred when I experienced my first "herx." After

swallowing my first dose of minocycline, I waited somewhat nervously to

see what would occur. It took approximately 18-20 hours to sense a

change in my symptoms. Pressure began to increase in the front area of

my head, my glands became slightly swollen, my throat somewhat sore. It

was by no means a drastic alteration in my condition, but I was able to

recognize a distinct change from the way I had felt in the previous

weeks.

One of the most welcome

aspects of the Protocol is the fact that it allows patients to be able

to control the severity of their herx reactions. Each antibiotic

required by the Protocol is introduced slowly, so that the body is

never forced to deal with excessively high amounts of dying bacteria.

MP patients can decide how long they want to spend on a particular dose

of antibiotic in order to ensure that they are herxing comfortably at

that level before moving on to take a higher dose. This allows members

to progress on the MP at their own pace, and means that people infected

with greater amounts of CWD bacteria do not tend to suffer more than

others who may not be as sick.

I have little trouble

herxing on a regular basis, but the symptoms I experience differ

depending on the day. There is no way to predict which symptoms may

arise from a particular herx. Occasionally my herxes affect internal

organs, causing pain in my lungs and throat. Other herxes have induced

more mental reactions such as dizziness and disorientation.

Some people may be

distressed by the fact that MP patients need to herx in order to slowly

heal. It may be encouraging to hear that, so far, my herxes have been

much more tolerable than I first imagined. Not once have any of my herx

reactions come close to putting me through as much suffering as the

symptoms I experienced on a day to day basis before starting the MP. I

also feel that a certain sense of reassurance begins to develop once a

person begins herxing on a regular basis. A healthy individual would

certainly not experience calculated periods of feeling worse several

hours after taking a low dose of pulsed antibiotics Thus, these

reactions reinforce the idea that the antibiotics are truly coming in

contact with CWD bacteria.

I believe the pain of

herxing results in a completely different state of mind than the mental

anguish generated by normal disease symptoms. When I was simply sick,

without a reasonable explanation for why I felt terrible, even mild

symptoms could lead me to feel depressed and weary. However, herxing is

"pain with gain". I may not feel well, but I understand the reason

behind my pain and, most importantly, I know that my current suffering

will allow me to feel better in the future. In fact, ever since I

started the MP, I am actually happier on days when I feel bad. Now when

friends call me up and hear I'm feeling "under the weather", they have

learned to respond with something along the lines of "great, keep it

up!"

Herxing on a regular

basis makes me confident that CWD bacteria are indeed being killed as

the MP specifies. However, Marshall has also compiled a series of blood

tests that suggest if levels of CWD bacteria are decreasing. This means

that a person on the MP can look at actual numbers and test results to

confirm that the antibiotics are generating the correct effect. Once

again, the availability of blood tests which help me track my progress

sets the MP apart from most other courses of CFS therapy. In the days

before I started the MP I could only guess which, if any, of my

supplements might actually be affecting my health.

Another appealing aspect

of the MP is the fact that the web site allows patients to become

connected with a wide variety of other people, all of whom are "in the

same boat." If I post a question, it's almost certain that other

members will respond with compassion and insight. When I'm facing a

problem, chances are somebody else has already bumped into the same

obstacle and will give me firsthand advice about how they overcame the

difficulty.

Soon members on the site

become familiar with the moderators, who spend countless hours keeping

close track of each patient by reading their "progress report." Members

are urged to create these reports by starting a "thread" in which they

describe their symptoms, observations, and concerns. How often a person

chooses to post is left completely up to them. Some members post their

reactions on a daily basis. Others post once in a while, choosing to

write only when a specific issue arises. Dr. Marshall himself often

responds to posts and progress reports, showing that he keeps careful

track of his online members as well.

Posts written for the

board may offer words of encouragement, but should focus on medical

issues related to the MP. However, members are able to offer one

another emotional support through private messaging. Each member is

given their own mailbox, where they can send other members confidential

letters.

My mailbox abounds with

messages from people all over the world, offering advice,

encouragement, and even funny anecdotes. I correspond with people from

Australia, the Netherlands, England, and all across the USA. Some of

them have turned into good friends. Before beginning my medications, I

even spoke to several members on the phone in order to clarify any

remaining doubts I had about how to correctly start and follow the MP.

After years of feeling somewhat isolated and alone with my illness,

it's been great to suddenly be able to correspond with so many people

who truly understand the challenges of dealing with a Th1 disease.

At first I thought that

living in a darkened environment during the day might be difficult to

endure. In the beginning, things did indeed seem a little dark.

However, over time I have gradually adjusted to my new surroundings to

the point where I hardly recognize that my rooms are somewhat dim. My

glasses are comfortable, and I have become so accustomed to wearing

them that I forget they are on. When I go outside, the world does seem

very bright, but I'm able to tolerate the light well by wearing my

darkest pair of glasses. I realize that for those people with Th1

illnesses who are able to find the strength to work, adjusting to the

requirements of the MP may become a greater task.

However, as far as I can

tell, it seems like most people now on the MP who worked before

starting the Protocol were able to keep their jobs. Those who work

inside have generally talked with their bosses and found ways to darken

their working environment so that they are not exposed to sun. Since

they are able to slowly increment their antibiotics, few people

complain that herxing has prevented them from making it to work.

Of course when I first

learned about the MP, I wasn't excited to hear that I would have to

wear sunglasses at all times. I also wasn't thrilled by the fact that

if I leave my house during the day, I need to make sure all my skin is

blocked from the sun, meaning that I end up wearing a hooded coverup

and a hat as well.

Occasionally I get

strange looks from people who must wonder why I am taking such lengths

to avoid the sun. But for the most part, my new look has been received

very positively by those around me. Like most victims of CFS, I look

very healthy on the outside, making it difficult for others to believe

the pain and suffering I endure on the inside. However, I have been

interested to note that in several cases my glasses seem to serve as a

sort of outward physical marker that helps remind people of the fact

that I am truly ill. Thus, for the most part, many people have actually

treated me with more compassion, concern and respect since I started

the MP.

Do I miss sitting out on

my deck and spending time by the pool? Yes. But there is not a sliver

of doubt in my mind that giving up these pleasures is a minimal price

to pay in order to regain my health. The changes required by the MP may

seem burdensome to someone who is not familiar with how hard it is to

struggle daily with a Th1 illness. However, I believe that for those of

us who have suffered debilitating pain for years and perhaps tried even

more extreme and painful methods of treatment, the sacrifices required

by the MP are quite tolerable. Sure, there are days when I'm herxing

and find myself heading for the couch. But for those of us who have

suffered from chronic diseases for long periods of time, this situation

is hardly unfamiliar.

At the current moment I

have been on the MP for only three months. I have a long way to go

before I destroy all the CWD bacteria that have been growing in my body

for a long period of time. But there is no doubt in my mind that I have

chosen the right course of therapy to treat my illness. Already I

notice an improvement in the way I feel on days when I am not herxing,

and I can feel my body beginning to slowly heal. My energy continues to

grow and my muscle pain remains almost nonexistent. I stopped my sex

hormones about a month into the MP. Despite this fact, my hormone

levels appear to be returning to normal due to the fact that last month

I got my period for the first time in three years. I no longer take my

thyroid supplement. To my amazement, no signs of Candida have returned

and my digestion has actually improved. Slowly I have added back dairy

products into my diet with no adverse affects.

My sleep has improved as

well. Before starting the MP, my sleep was disrupted and unrefreshing

despite the fact that I took several sleep medicines. Now, due to the

hormonal readjustments caused by Benicar, I've stopped one of the

medicines, and generally sleep a solid 7-8 hours. Another positive sign

is that my light sensitivity is already starting to decrease. Although

I am still bothered by bright fluorescent lights and intense sunlight,

I can comfortably tolerate normal indoor lighting as long as I am

wearing my glasses.

There is no doubt that

the MP requires a strong commitment. It involves several lifestyle

changes in order to avoid light. Herxing can be difficult and

uncomfortable. Finally, the MP is not a quick fix. It requires a great

amount of patience to follow the MP guidelines for a year or more in

order to obtain symptomatic remission. But for the first time since

becoming ill, I feel that I am in control of my illness. I see the

light at the end of the tunnel. It may be a long tunnel, with a variety

of difficult twists and turns, but in the end I know I will make it

through. I hope you will join me on the other side.

Author's note: Dr

Marshall was awarded a Ph.D. for a thesis describing "Modeling of the

Insulin-Glucose Metabolism in Healthy and Diabetic Individuals." He has

many publications in the medical literature, spanning more than 20

years. He specializes in solving problems - in medical research - and

is not a licensed medical practioner. He is, however, happy to share

his discoveries with your primary care physician at medical

conferences, and even by telephone. There is also a special private

area of his website MarshallProtocol.com reserved for licensed medical

practitioners to discuss their patients with the Autoimmunity Research

Foundation's research staff.

The website for the MP is: www.marshallprotocol.com

EDITOR'S NOTE:

Please be aware that Trevor Marshall, Ph.D., sometimes referred to as

"Dr. Marshall" in the following article, is not a medical doctor (he is

not an MD) but rather a research scientist with a doctorate degree. Amy

Proal provides her personal experience with the Marshall Protocol (MP)

for the benefit of other readers, but ProHealth/ImmuneSupport.com does

not endorse the MP as a treatment or cure for CFS.

©2008 ProHealth, Inc. Copyright PolicyBy: http://www.ImmuneSupport.com

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