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Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Thu Sep 2nd, 2004 01:54
MP ALL in ONE Introduction to Links & Information was a List of links & information that I put together to help Members to understand and decide and prepare re Marshall Protocol ..

And.... any Quotable Quotes I picked up along the way ...

Welcome to Marshall Protocol.com.

First:

The Information here is to help you understand the protocol so that you can determine if it makes sense for you at this time.

If you decide that you wish to pursue the Protocol, you will find much additional help with suggestions in making the case for your doctor, reassurances of the safety of Marshall Protocol medications, and information about how to comply and persevere, and to arrange time and space and management strategies in Our life to take best care of Self as part of doing MP...


You can tell family and friends you have a chronic inflammatory disease, and you are on the Marshall Protocol -- taking antibiotics with Benicar to help you get well.

WHAT IS THE MARSHALL PROTOCOL? The First Basic Questions Answered
~~~~~~~~~~~~~~~
NB: 
SAFETY WARNING TO ALL
Combining other protocols with the MP is contraindicated

Information @ click on links:
Is the Marshall Protocol an Applicable Treatment for my Disease?

"Be sure that you spend enough time learning all you can about Marshall Protocol here at our website because most Drs are still quite new at this new Science too, so it will be up to you to take responsibility for your own progress by being pro-active and learning everything you can about it -- preferably before you start because after you start, you might not feel like spending very much time in front of the computer screen for awhile. So, it will be to your advantage to learn everything you can NOW in order to get off to a good start." TxLM..

How do I know if I have the 'right stuff' to be successful with the Marshall Protocol?

Can children be treated with the Marshall Protocol? 

Can a pregnant woman be on the Marshall Protocol?

Checklist when Starting MP

Apart from your symptoms or diagnosis being indicative, the "easiest" way to diagnose whether or not you would have pathogens such as Cell Wall Deficient Bacterium that can be eradicated with the Marshall Protocol would be to have your D Metabolites tested. 

D-METABOLITES TESTS Basic blood tests for the Marshall Protocol

======================
How are Sarcoidosis and Other autoimmune diseases connected?


The abstract of the poster presentation Dr Marshall made at AACFS conference is now online at URL
http://autoimmunityresearch.org/aacfs2004/aacfs.pdf
 
Our PubMed paper, abstract at URL
http://tinyurl.com/5rgmq

and full text at URL
http://yarcrip.com/sarcoidosissuccumbs-preprint.htm

explain the essential unity in all the Th1 diseases, where there is dysregulated 1,25-D and argues that 1,25-D and D-Ratio are the best diagnostic and research tools.

=========================

First & Constant Guide to Marshall Protocol is 

Phase One Guideline see NEW Addendum. How to Start the Marshall Protocol
This document is available at the above link in PDF format. is How to do the first phase of the Protocol which will give you an idea of the essential changes to lifestyle  & the commitment required for any chance of success.

phases 2 & 3 will be given when each person is confirmed as being ready. 


The Essential Information is in ABOUT THE MARSHALL PROTOCOL and all links alphabetised in the ABC of MP 

Read the what is and how to do the Marshall Protocol. Information for patients and their physicians. Read-only. to help you understand the protocol so that you can determine if it makes sense for you at this time.

If you decide that you wish to pursue the MP, you will find much additional help with suggestions in making the case for your doctor, reassurances of the safety of Marshall Protocol medications, and information about how to comply and persevere.

The very informative
DVDs 'Recovering from Chronic Disease' derived from Our Chicago Conference can be ordered @ our AutoImmunity Research Website

The FAQs were written to provide answers to most questions. It is very helpful to our busy voluntary Board Staff, if everyone would check the FAQs before they ask a question. Thank you.

If you have any further questions about the MP not answered in the forums on this site or by doing a site search, let us know at the General Discussion Board.

NB: must read 

SAFETY WARNING TO ALL
Combining other protocols with the Marshall Protocol is contraindicated

=========================

MP Memberships Temporarily Closed

How to Register and Use This Board
PLEASE READ BOARD POLICIES BEFORE POSTING. Includes introductory information about Dr. Marshall and his work. Also, post questions about how to use the board.

INFORMATION TO INCLUDE IN YOUR SIGNATURE LINES
Certain medical information is required before Staff can reply to your questions
=========================
Boards for Information / questions / exchange:

THE MARSHALL PROTOCOL is at the top left of your screen on each page and has the full sitemap.
=========================

ANNOUNCEMENTS AND NEWS for more information

=========================

see
**General Discussion of the Marshall Protocol**

~~~~~~~~~~~~~~~~~~~~~

HOW TO FIND OTHER MEMBERS IN YOUR AREA
Please fill out your profiles if you want people to be able to find you!~~~~~~~~~~~~~~~~~~~~~

ESSENTIAL ASPECT of Marshall Protocol for All:

ESSENTIAL INFORMATION ABOUT THE MP (Required Reading)

ORDER YOUR NoIR ASAP: We recommend waiting until the NoIR glasses arrive before you begin Benicar: for reasons of comfort, safety and effectiveness.

Please order your NoIRs asap because we've been told some orders from NoIR are taking up to 3 weeks. 

If you have any uncertainty about which model you need, call NoIR who are very friendly and helpful and aware of the Marshall Protocol. 

New style of NoIRS! compliance is essential for success

~~~~~~~~~~~~~~~~~~~~~~~~~

contacting your Dr. 


SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

~~~~~~~~~~~~~~~~~~~~~~~~~~

BENICAR SAFETY STUDIES Helpful for reassuring your doctor

~~~~~~~~~~~~~~~~~~~~~~~
You may wish to refer your Dr to the >  

MP Memberships

~~~~~~~~~~~~~~~~~~~~~~~~~

MEDICATIONS TO AVOID ON THE MARSHALL PROTOCOL

WEANING FROM STEROIDS prednisone and Cortef/cortisol
We recommend not to begin Minocycline taking every other day until 2 weeks after being totally weaned.

Any questions about your meds may be directed to the Board.

 ~~~~~~~~~~~~~~~~~~~~~~

the blood tests from  Phase One Guideline available online same as above link


Please Note: The "easiest" way to diagnose whether or not you would have pathogens such as Cell Wall Deficient Bacterium that can be eradicated with the Marshall Protocol would be to have your D Metabolites tested. 

D-METABOLITES TESTS Basic blood tests for the Marshall Protocol

2. Measure your D-metabolites: 1,25-dihydroxyvitamin-D & 25-hydroxyvitamin-D. Remind the Lab that the blood must be frozen for the 1,25-D assay. Please consult the patient tutorials for a list of suitable labs. It may also be helpful to measure % Lymphocytes, CRP, Alkaline Phosphatase, and Triglycerides. These tests will track systemic inflammation.  Your doctor may also want to assess your kidney function by testing creatinine and BUN
.

B says>> also if you are on thyroid or hormone etc meds. is good to have a baseline test done now to check on later too.

What to include in your preliminary test result reports.

Do I need to get my 25-D down before I start the MP?  

~~~~~~~~~~~~~~~~~~~~~~~~~

BENICAR: Where to purchase Benicar for self-pay members
Includes information about countries where Benicar not sold and "Open Care" Program for low income patients

HOW TO OBTAIN INSURANCE BENEFIT FOR FULL DOSE OF BENICAR
Letter of medical necessity & Consent to Treatment form & letter to insurance company

Australian Members news:
To order NoIR Glasses in Australia:
Benicar also available in tablets on PBS from the local chemist.. 
Benicar for Aussies  has the recent prescribing Information

There is no substitute for Benicar. I cannot afford Benicar. Is there an acceptable substitute?

& Bringing Benicar in to Australia

~~~~~~~~~~~~~~~~~~~~~~~
get mino / script. and maybe a tablet splitter.
How do I take a low dose of minocycline when the capsules only come in 50mg?
~~~~~~~~~~~~~~~~~~~~~~~~~

HELPFUL HINTS FOR THOSE ON THE MARSHALL PROTOCOL
Log sheet; B/P monitors & technique; the right kind of Benicar; multivitamins without D; digital timers/watches/pillboxes;pill reminder alarms

~~~~~~~~~~~~~~~~~~~~~~~


What kind of probiotics should I use?

~~~~~~~~~~~~~~~~~~~~~~~

Arrange time and space in your Life for the Marshall Protocol so that you are able to stay out of the sun / light .... Your body is working very hard just from being unwell.. Marshall Protocol works your body to the limit that you set it to work, so you may need to shop ahead, and have some resting time available to yourself... and if you live alone, you may like to arrange someone to check if you need any shopping or help.


How will the Marshall Protocol affect my life? Can I continue to work?

How to Support Someone on the MP MP and Relationship tips

scroll to the bottom of this page for some personal posts.

~~~~~~~~~~~~~~~~~~~~~~~

Flu Vaccine?


Should I get the flu shot

~~~~~~~~~~~~~~~~~~~~~~~~~

Expectation

as per Phase 1 doc available online at same as above link http://AutoimmunityResearch.org/phase1.pdf It is expected that Treatment needs to continue till bacteria are killed. blood tests will confirm. and you will know by how you feel.

How long does the Marshall Protocol take?

Why does the Marshall Protocol take so long?

Can I go out in the sun again after remission? How will I know when I've recovered?

How long does the Marshall Protocol take?

Can reinfection occur once we are healed?

Why is the Marshall Protocol not being discussed & used by doctors around the world?

What degree of healing is possible using the Marshall Protocol?
A description of what to expect on the road to recovery, treatment endpoints, and the gap between the public and medicine's perception of successful treatment.

MARSHALL PROTOCOL SUCCESS STORIES Members Testimonies of their improving health >> individual LINKS here: Encouragement for those on and considering the Marshall Protocol

Many have expectations of which symptoms they can expect to count as 'herx' symptoms and that anything outside of that is unexpected and therefore not 'herx'.

I have said for a long time before MP..
"Blessed are they who have no expectations for they shall not be disappointed"

see explanation of Herx Immunopathology-Basic Information (click here)

..........

Taking time for rest and recuperation is an important aspect of our Life anytime....

& more important while doing MP..

so please take Care of Your Most Important asset... YourSelf...

===========================
The Marshall Protocol Blessing
 
To us Each & All:
 
May your herxes be big enough
 
for you to be making good progress 
 
and not too big  
 
that you may still be able to rise to the challenge!!!
 
Barb :cool:



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Tue Sep 21st, 2004 21:07
specific information to give to my doctor
explaining why starting at the full dose of Benicar,and not gradually increasing is so important.

BENICAR SAFETY STUDIES
Helpful for reassuring your doctor


Where can I learn about Benicar used for applications beyond anti-hypertension? Links to published articles about usefulness of Benicar/Olmesartan

Why shouldn't we ramp up the dose of Benicar?

My blood pressure is already low. Can I take Benicar?

I cannot afford Benicar. Is there an acceptable substitute?

How does Benicar work? Why is it superior to other ARBs?



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Wed Sep 22nd, 2004 20:22
"Now it seems is time to be patient and follow through with the MP treatment. 

 The bit of improvement I experienced is sticking and I'm experiencing a kid like impatience for even more improvement all the way to breakthrough.

I'm telling the troops to stick with it with patience and to not get overly frustrated when nothing new seems to be happening.  

MP is a slow proceeding protocol as you know and patients need to be careful not to prejudge the results before they've followed the treatments guidelines and timeline completely.


Its going to be a while.

There is nothing else to do that I can see.  We're on the cutting edge. 

You and I are experimenters not willing to limit our selves to written concepts to
determine workability. 


We understand the value that sometimes one can only gain and learn by participating in reality directly, ie, doing it.


It is a risk without full proof yes, but so is prejudging and waiting until all proof is in, which by that time it might be too late...................... "  



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Tue Sep 28th, 2004 20:50
MEDICATIONS TO AVOID ON THE MARSHALL PROTOCOL 

Is it safe to take anticoagulants while on the Marshall Protocol?

Should I stop taking any of my medications?

I thought all over-the-counter supplements were safe. Which ones should I be concerned about?

Why do I have to stop taking supplements?

Why should I avoid folic acid supplementation?

Don't I need to take a calcium supplement?

My 25-D is low. Should I be concerned about osteoporosis?

Should I take vitamins?

I need to have surgery. What should I know about anesthesia and the Marshall Protocol?

I need to take a different antibiotic for awhile. What should I do? 



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Sat Oct 2nd, 2004 19:40
A Guide to the Board 

THE MARSHALL PROTOCOL <<click: This is at the top left corner of the page: to see the layout of the Board

TOPICS OF DISCUSSION 

How to Register and Use This Board
PLEASE READ BOARD POLICIES BEFORE POSTING. Includes introductory information about Dr. Marshall and his work.

Please see INFORMATION TO INCLUDE IN YOUR SIGNATURE LINES
Certain medical information is required before Staff can reply to your questions

ABOUT THE MARSHALL PROTOCOL

What is the Marshall Protocol?
What is and how to do the Marshall Protocol. Information for patients and their physicians.

MARSHALL PROTOCOL FAQs.... Easy Finder

all LINKS also found at ALPHABETIZED INFORMATION SOURCE The ABC of MP

ANNOUNCEMENTS AND NEWS

PROGRESS REPORTS [members on Marshall Protocol only]

and there is a Search feature on the Board: How to do a site search

and see the other buttons at the top of your screen. re your accountprivate messages. and for help topics, and Home button.



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Sat Oct 2nd, 2004 19:54
from Huey progress Page: 1 2 see page 2

Huey says:
"However, I try to keep in mind that feeling good is not the goal of  Phase One.  It seems to me that if I start focusing on feeling good during Phase One, that I am setting myself up for an expectations trap.  I should not expect to feel good during Phase One…my goal is to stay on the tolerable edge of a herx…and that means feeling poorly, and as Dr. M has said, "when you feel you are able" increase the dosage.  "

Reenie says>" In My Opinion, Dr M is "warning" people from thinking they will begin to feel better by going on the Marshall Protocol... not so, since we MUST herx to kill off the pathogens. 

However, In My Opinion, I don't believe that we are supposed to EXPECT to feel BAD all of the time... not at all.  It's OK, and even desirable to feel good in between herxes. 

Dr Marshall has said many times, that the beauty of the Marshall Protocol is that we can MANAGE the herx and we can take our time.  He's even said that at about 3 mos, most people start to feel BETTER"

How do I know if I'm ready for phase two?



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Sat Oct 9th, 2004 07:32
HERX .... What is it?

Observations of Jarisch-Herxheimer Reaction in Sarcoidosis Patients
Applies to all Th1 illnesses

Quote from Ms Dale: re HERX:
Sarc: MP Nov 2002
 
"It is my observation and experience that the Herx is one of the most
difficult things for people to understand. 
 
When symptoms "act up" they get the jitters - understandably, due to the
years of disease and being so symptomatic.
Many feel they are getting worse... But when the symptoms do occur with the Herx - I have witnessed that symptoms begin to fade and then never re-appear... 
 
Herx is an on going process of healing and very much a part of the Marshall
Protocol.
It takes time - patience - and great deal of perseverance - to ride
this out.  For many who have been on the MP for a long period of time - the
valley and mountain feelings have been plentiful.
 
But the end result is so worth the journey."
 
Ms Dale
(with permission)

Brain Herxing info around the Board:
re itching sneezing, hot cold sensations, smell sensations, anxiety and cognitive, shifting sensations.. and etc ... re brain herxing healing..
is in the HERX .... What is it? FAQ.


in MARSHALL PROTOCOL FAQs.... Easy Finder
Add this link to your Favorites


see ALPHABETIZED INFORMATION SOURCE The ABC of MP



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Thu Oct 21st, 2004 02:01
Taking Benicar
the importance of regularity of dosing


What times should I take my Benicar? What if I forget a dose?

HELPFUL HINTS FOR THOSE ON THE MARSHALL PROTOCOL

Regular dosing of Benicar is critical to maintaining the inflammation blockade.  If one waits too long between doses, the blockade can be lost and take 2-3 days to regain............... see info below....

whatever dosing schedule we decide on, is best to be convenient for ourselves.... and regular...


I have a timer to set around the clock... and I keep the timer, the Benicar, & water close by me all the time... on my bedside table at night... & when I'm going anywhere I take extra in case I'm caught out for longer than expected... & will not be caught without it.

supplies well ahead of time:

And it is good to make sure of supplies well ahead of time of need too so that there is no running out while waiting for it to come in the mail from overseas eg..

The excerpts below are taken from

PHASE ONE MARSHALL PROTOCOL
How to start the Marshall Protocol


"5. Begin taking Benicar 40mg every eight hours (every six hours is preferable) to interrupt the inflammatory cycle and reduce the severity of potential Herxheimer reactions (For example; 6am, 2pm,10pm or 6am, noon, 6pm, midnight)

You MUST use Benicar when you are on the Marshall Protocol. Benicar blocks the production of all inflammatory cytokines by blocking the Angiotensin II Type I receptors. This inhibits the release of TNFalpha from the  Th1 immune reaction and also has a profound, direct effect on the actual intra-cellular bacteria. Benicar is a CRITICAL component of the Marshall Protocol. Without it, the immune system may not be able to use the antibiotics to kill the bacteria. This is evident in those patients taking antibiotics who do not experience a Herxheimer reaction until they take Benicar. Other patients experiencing severe Herxheimer reactions may suffer tissue damage from the inflammatory reaction without the protection that Benciar provides. For these reasons, we cannot endorse the use of this guideline unless Benicar is prescribed at the recommended dosages. The success of this treatment plan is vitally dependant on using these antibiotics with Benicar.

Be alert for the Herxheimer reaction. This is an increase in your present  symptoms or a return of your previous  symptoms that is caused by endotoxins being released by the dying bacteria. Your Herxheimer reaction will be unique to your disease systemic involvement. Some patients get muscle pains, others experience increased fatigue or shortness of breath, etc.. It typically begins 1-24 hrs after your minocycline dose and usually dissipates 1-48 hrs before your next antibiotic dose. If you find that the herxheimer shock is too severe, do not take the next scheduled dose of antibiotic and increase your Benicar frequency to as much as every four hours to make sure the Herxheimer shock does not get worse. Do not hesitate to seek medical attention if you think you are in trouble." <<<

Observations of Jarisch-Herxheimer Reaction in Sarcoidosis Patients
Applies to all Th1 illnesses

Dr Marshall and others of us have found that when we are going to be exposed to light or have been, that we make sure our last Benicar dose was no more than an hour since, and we adjust our dosing to Q4h for that 12 hours to help our blockade stay in place and to reduce the symptoms.

When and why should I vary my Benicar schedule?  says

"Some very symptomatic people find that they feel best taking 20mg of Benicar every three hours during the day and then 40mg at bedtime with the next dose six hours later. A typical schedule would be 20mg at 6am, 9am, noon, 3pm, 6pm, 9pm and then 40mg at midnight. That would be equivalent to 40mg every six hours or 160mg in a 24 hour period. "

Aussie Barb says :

I cut the 40mg pills in half. > 20mg. this regimen does seem to work better for those of us who are more symptomatic / sensitive.. I eg do no good at all taking my Benicar any other way..

some find the more frequent timing difficult... but I have a timer set, and my split Benicar in a weekly pill container, and water with me at all times..

and I take a 40mg full tablet to go to bed to last longer > for up to Q6H.


For more information on Benicar see 

BENICAR Information Post at the top of the Benicar Forum
To Read Before Beginning Benicar



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Mon Nov 1st, 2004 05:06
"The longer I am on the MP, the more that I realize how important it is to understand it - to a depth that permits a deep personal conviction regarding its value and validity.   Such conviction is essential to carry a patient through the many challenges it poses.   

My experience would tempt me to give the following advice to those considering the MP; "If you don't understand MP well, and don't feel a strong belief in its validity and potential - don't even try it"." - DaveW

a Quote:
"If you don't understand MP well, and don't feel a strong belief in its validity and potential - don't even try to start it until you do."

Furthermore, I will go even further to state that we no longer urge anyone even to consider doing the MP program at all unless we are fairly certain that the individual is pro-active enough and has the necessary motivation and mental clarity and social support to make a go of it -- because we now appreciate fully how challenging it is to make it through the initial adjustment period.

We spent over two months studying every aspect of the MP, prior to making the commitment to pursue it, and I'm thankful we did. It was definitely not time wasted!

We don't want to see anyone fail the MP because the experience of failure can be too overwhelming, especially if the person is severely incapacitated and mentally brain-fogged by his/her illness.

For that reason, unless someone has the mental concentration and ability to study the program thoroughly first for him/herself, this person is not a good candidate for the MP program, period -- because this person's failure is inevitable, due to the fact that most MP-friendly doctors and their nursing staffs aren't yet experienced enough with the MP to be able to guide their patients through it when they hit the first bump in the road.

Starting the MP program is not a cake walk!.... but it's the most thrilling and rewarding experience imaginable.... once you finally make it successfully past the first few hurdles!

The first few days and weeks, one wonders "Will I be able to endure this?"... and those dark clouds of doubt, about whether it's really worth it or not, are with you in the back of your mind, every waking moment of every hour of every day, which can stretch like an eternity.....until you finally come through on the other side and wake up one day and realize that it really is working for you, afterall.

At that point, you want to shout about it to everyone you know -- except you don't dare, because you know they won't be able to comprehend it until they experience it first-hand for themselves.... and then you sober up and remember to ask yourself, "but will my friend be able to succeed with this?" 

And that's when you go stone silent and simply offer them the URL for the website and suggest they study it very carefully first, before deciding, with the stern warning that it's not very easy to do in the beginning. 

To our way of thinking, this is the most important part of the "Introduction to the MP" -- ie, the mental preparation for doing it successfully, before one ever starts out.

Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol

If you have questions after reading the MP material, please visit the message board at our sister site where all your questions about Th1 inflammatory diseases and the Marshall protocol will be answered.

Go to http://CureMyTh1.org, register the same username you have used here and activate your membership when you get the confirmation email. Then you can click on **Ask your Questions in Here** to post your message.



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Fri Nov 5th, 2004 02:48
Considering aspects of Light exposure:

Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..

outside (natural)  light including reflected, and including thru any tinted glass in house or car: is definitely to be avoided on skin and in eyes

Darken your home and work environment if you work.. to protect skin from Natural Light.

inside (artificial) light: no need to cover skin.

computer & television: switch brightness / contrast down. wear NoIRs

fluorescent light : protect eyes > wear NoIRs.

incandescent: ok to use if not too bright or direct to eyes. avoid bright light in eyes / wear NoIRs or have light indirect.

Halogen: dim, & protect eyes from direct light by cap & NoIRs

all bright light including car headlights > wear NoIRs.....

Something to watch for:

Apart from the Fluorescent lights:
 
in some stores, hairdressers, etc, malls, airports, be aware also of Natural Light thru Skylights, Windows.... in which case you need skin covered as well.. and maybe the darker glasses..

~~~~~~~~~~~

To turn down brightness:

Television

on remote go to menu > picture > > brightness. from there.

Computer:

mine has a round knob on the front lower frame of the monitor, which can be pushed in and then turned to find the brightness / contrast icon to change.

Hercules says > On computers, you may need to turn down contrast more than brightness.  Brightness on my dell flatscreen does nothing really.  Contrast does alot.  If there aren't dials on yours then there should be buttons.

~~~~~~~~~~~~

Mike27 wrote:

You should avoid natural light completely if it's at all possible... not just direct sunlight, but all light created by the sun (including reflections and outdoor light on cloudy days).  When you go outside, cover your skin with medium weight, dark colored clothing including gloves, glasses, and big hat or hooded sweatshirt.  You need to protect your skin and eyes from natural light.

Regarding indoor lights, keep it as dark as possible, but not so dark that you can't see!   SAFETY: you must be able to see. If you happen to have thick blinds over your windows, you probably won't need to use black plastic or foil.  I've invented for myself what I call the "shadow test".  Stand next to your windows once they're covered with blinds, curtains, etc., and turn around to see if your body has a shadow on the floor or furniture behind you.  I've noticed that if there is a significant natural-light shadow behind me, I will feel worse (which means my 1,25-D is rising from the exposure, which I'm sure you know now is bad).  If the shadow is at all significant, get a better window covering.  And remember, you don't need to do this all over your house... if you spend the bulk of daylight hours in your living room and kitchen like I do, then just worry about those rooms.

Also, the general consensus is that you only need to protect your eyes from indoor lights, not your skin.  As a general rule of thumb, regular incandescent light bulbs are better than flourescent light bulbs, but your common sense (and how the light make you feels) will guide you.  The brighter the light, the worse for your eyes.  Protect your eyes (with your NoIR's) from all bright lights, including the computer screen, TV, and movie theater screens.  Once you get your NoIR's, you'll notice that your protection requirements differ.  For instance, sometimes if I'm watching a smaller TV from a far distance, I don't need eye protection at all.  At other times, however, I'll need my darker, outdoor NoIR's for TV and bright indoor lights (such as flourescents).  Once you get your NoIR's, you'll be able to get a feel for how much protection your eyes need... you'll be able to tell when there's too much light for you right away, not after sitting through it to the point of getting a headache.

Mike @ > avoiding light in the house 


Meg Mangin wrote:

We don't know if there is a safe distance to watch TV from so it makes sense to err on the side of caution and wear your NoIRs when watching TV.

In general, if there is enough light to grow a plant, you should wear the appropriate NoIRs. If the house is dim and you're not staring at a bright light or screen, it's fine to go without the NoIRs.

It's okay to read by incandescent lights just have them behind you or shielded so they don't shine directly into your eyes. Turn them up enough to see comfortably if you keep your NoIRs on or take the NoIRs off if the lights are turned down low. We don't want you to get headaches from low light that's too low for reading, etc..

Re Sunlight
*
Dr. Marshall says
We do not need to avoid D forever, only until we are well.

Healthy people do not need to avoid D, only people with Th1 inflammation, as is indicated by 1,25D levels well above the population mean.

Driving a car in daylight is the most certain way to make sure you get an overdose of 1,25-D. The sun pours in on your hands (which must be gloved). Both direct and reflected light illuminates your face and ears. Sun usually pours onto your torso and legs, which must be heavily clothed.

Meg says>> re Inside Lighting: wear NoIRs

"Protecting your eyes from those store fluorescent lights is very important but you can forgo the gloves, etc. These lights affect the eyes, not the skin."

Meg Mangin R.N. says:

"People who can't completely avoid sun exposure like those who must work or who have small children to look after may have a difficult time with the Marshall Protocol.

How much you can cheat on the sun avoidance is an individual matter. If someone is Herxing, then they are responding and progessing. If those Herx reactions are intolerable and uncontrollable because of sun exposure, then the Marshall Protocol may have to be discontinued until a future time when they can be diligent about avoiding sun exposure." <<


also I will add here too, that if you are suffering more sun exposure symptoms, then an extra dose of Benicar per day can be beneficial. Dr Marshall says > making sure that when you are exposed that you are not more than 4 hours away from your last Benicar dose. <<

a post Re Light Exposure & Lifestyle from Meg Mangin R.N.

Yes, the Marshall Protocol requires a big lifestyle change for most of us. I've been musing why the sarcies seem to accept this a bit easier. It may be due to the fact that most sarcies initially got a diagnosis of cancer. Hilar lymphadenopathy looks a lot like lymphoma on xray. In my case, the doc said multiple myeloma. I can tell you that after contemplating chemotherapy, radiation and surgery that the sacrifice of giving up activities done under 'lights' seemed an immense relief.

You've already moved your walks to cooler times of the day. What you may not realize is that we aren't just talking about sunlight but daylight. The UV rays are not blocked by shade and much light is reflected off various surfaces so even a few minutes of being outdoors during the day can be too much. If you insist on walking outdoors, then try to do that just before sunrise or after sunset. Of course, you will be covered head to toe with fashionable clothing and NoIRs. Your neighbors will wonder who is this mysterious new person?

The level of 1,25-D is not a good indicater of the level of sun sensitivity. My 1,25-D was just 38 and I had considerable sun sensitivity. The best way to determine how sun exposure affects you is to rigidly stay indoors for a couple weeks. This restriction will lower your 1,25-D, just like Benicar does. Then when you go out again, your symptoms will tell you if the sun has jacked up your 1,25-D.

Some people can get away with more light exposure than others. Experience is the only way to tell. If you are having intolerable symptoms (and I think you were!) or if you don't Herx with minocycline, your 1,25-D is probably too high and you need to pay more attention to avoiding all 'lights'. Those people who do not have the luxury of avoiding 'lights' due to work or family responsibilities may not be able to manage the Marshall Protocol. Or they may do okay being able to tolerate the symptoms due to 'sun sickness'. Their progress may be somewhat inhibited but if they continue to have Herx reactions, all the bacteria will eventually be killed.

It sounds like you will do fine with avoiding foods high in Vitamin D. I'm sure you can find a way to make your famous cakes even better by eliminating those nasty egg yolks.

The library is one of my most favorite places in the world. If yours are brightly lit simply wear your indoor NoIRs. Everyone will think you are an incognito author. :D

You don't have to stop living. Many of us have adapted our activities and once we felt better because of it, it no longer felt like such a sacrifice. In fact, you will find out what living really is once you really get your life back with the Marshall Protocol.

Meg

How will the Marshall Protocol affect my life? Can I continue to work?

BENICAR at the top of the Benicar Forum
To Read Before Beginning Benicar

AVOIDING SUNLIGHT and BRIGHT LIGHTS
How and why to protect skin and eyes while on the MP

Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..

The NoIR glasses have been taking some time to be delivered so need to be ordered asap.. As per the Phase One doc, we advise people not to begin Benicar until they have their home / workplace protected from light and they are wearing NoIRs..

Why is my 'herx' more intense after exposure to Light & / or Vitamin D ?

When and why should I vary my Benicar schedule?

Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated (6 hour half-life)<< to help keep symptoms minimal..

What precautions do I need to take when I am going out or when travelling away?

How does ketoconazole cream work?

Will using a sunscreen or protective clothing lower/make my vitamin D too low?

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS
ON PERSONS WITH TH1 INFLAMMATORY DISEASE

Incident Radiation Tutorial
All light- infrared, visible and ultraviolet

TESTIMONIALS to the Need for Avoiding Light
Member's personal experiences

PROTECTING YOUR EYES
Where to purchase NoIR and Bolle 100 sunglasses

"The short-term consequences of not wearing adequate eye protection will be an increase in neurological symptoms caused by stimulation of the amygdalla in the brain. These neurological symptoms include fatigue, iriitability, aggressiveness, lack of concentration, brain fog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychosis."

Can I delay MP while avoiding Light and D?



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
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 Posted: Thu Nov 11th, 2004 18:26
Lilly wrote this Important Note  perhaps what I do to keep on track would help you, and others.

I printed out the Phase 1 instructions and I read them over EVERY DAY, as I have my morning coffee. I will do the same for Phase 2 instructions. I call it 'brain-fog insurance'.

When we are eager for improvement, sometimes we focus on one aspect of the treatment and forget or ignore other aspects. As your experience indicates, this can be like trying to ski with only one ski and no poles. Crashing is inevitable.

Thanks for sharing, and good luck,

Lilly



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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
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 Posted: Fri Nov 12th, 2004 02:09
Light sensitivity-basic information (click here) and...

Here are some links to date off the General Discussion Board concerning Light Avoidance:

Questions about sun exposure
(especially for those that are working)

fluorescent lights for those sensitive to.

New style of NoIRS!

My Symptoms Before and After Sunlight and D Avoidance Alayne

MP LIfestyle only (no Benicar or Minocycline)
Reporting the effects of diet, sun/light avoidance and NoIRs


bathroom lighting
have I got too much natural light coming in?


FAQ Why is my 'herx' more intense after I go outdoors or get more light?

Is Herx possible from just reducing sun exposure??

Fluorescent lights, halogen, incandescent

Is it okay to use candles?

clothing outside 

Redi Shades
Black or white?


redi shades 
 
Skylight
 
avoiding light in the house
 
Overview of vitamin D article, references?, questions, suggestions?
 
Too Dark?  
 
darken a room
 
Re-introduction of sunlight and Vit. D.  
 
Windows and vitamin D
How do I explain some aspects of this protacol?
 
Week-long herx? without Benicar?
is this possible
 
Recently started protocol, questions about how I am feeling 
 
? Re: Reducing Sun Exposure  
 
Very miserable just reducing sun and vit D...help!
 
Question re the Sun

Lyme and MP
Sun exposure
 
SAD is Th1-biased
Seasonal Affective Disorder joins the Th1 superfamily
 
Sun / light protection in hot weather. a Cape? Page: 1 2
exploring how to dress for success MP style :)
 
The more I learn, the less I know
another sunlight question
 
Light vs. Dark Clothing in the Sun Page: 1 2
 
Happening already progress in the dark
 
The Beginning: My Update the steps as I take them to begin MP



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


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 Posted: Sun Nov 14th, 2004 20:03
Q: I need document to take to Dr. to show Marshall Protocol is same for CFS and Sarc
 
Reply from Dr Marshall >

The abstract of the poster presentation I made at AACFS is now online at URL
http://autoimmunityresearch.org/aacfs2004/aacfs.pdf

..trevor..



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
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 Posted: Tue Nov 16th, 2004 11:23
Meg Mangin R.N. wrote:

I understand your interest in finding hard data to support the efficacy of the Marshall Protocol and verify its long-term success. The Marshall Protocol is cutting edge medicine. It was discovered and refined through unconventional means. If Dr. Marshall had not taken the time to develop this protocol and had the compassion to share it with fellow sufferers, you would not be reading about it anywhere.

It takes a special patient to find this new information, recognize its worth, persist in finding a doctor who will take the time to study it and then to finally embark on what is still an 'unproven' (and sometimes difficult) journey to recovery. Those of us who have gone before you and share Trevor's passion to help others get well, are trying very hard to make this process as easy as it can be. We have limited resources and right now they are being stretched to the maximum.

The bottom line is, we cannot supply you with any kind of guarantee. And it takes a considerable amount of our time and energy to repeatedly explain this. We hope you will continue to read what we and the MP patients have to offer on our websites, but if you cannot, at this time, accept the Marshall Protocol as it is, then we would appreciate it if you would allow us to spend our time answering questions from those patients who have decided to try to get well with the MP.

Best,

Meg



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


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 Posted: Sun Nov 28th, 2004 14:14
Re Chilled - hot tub? Bath?

Meg says >>" Yes, hot baths are okay but you should be careful to only raise your body temperature one degree or so. And keep in mind that the increased body temperature may increase the symptoms of a Herxheimer reaction."

see also >>Sauna Use No to IR....

see Information: Incident Radiation Tutorial All light- infrared, visible and ultraviolet



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


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 Posted: Tue Dec 7th, 2004 06:54
Dr Trevor Marshall wrote: What I presented at the Budapest conference was data which hinted that all the Th1 diseases, ranging from Diabetes to Sarcoidosis, are likely caused by bacterial pathogens, and a pathogenesis most probably describing the disease process. Here is the abstract to an earlier paper:
http://tinyurl.com/5rgmq

and the full text preprint from it
http://yarcrip.com/sarcoidosissuccumbs-preprint.htm

my slides from the Budapest presentation

..Trevor..



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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
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 Posted: Mon Dec 13th, 2004 18:35
DaveW wrote: I was spreading the word of the MP to everyone I knew, but I have since come to realize that in order to succeed on the MP - requires numerous "qualifications".
 
My perception, is that these qualifications include:

* A willingness to study the MP, and an ability to understand it at a level that will permit a level of belief and committment strong enough to carry them through the difficult adjustments and unpleasant herx.

*  Access to and ability to use an online computer (to access the MP site).

*  Finances to afford benicar and the other MP drugs.

*  A personal temperament that is willing to take risks, break new ground, tolerate uncertainty, and have the patience to defer gratification. It is not for "I want it to work right now" types, or the cautious " I'll wait and see" types.

*  A degree of illness that makes the cure worth the time, effort and cost.

*  Access to a doctor who will support and prescribe the MP.

*  A reliable access to benicar (if it is not available in their country).

These are just my thoughts on it. Do you perceive any other "qualifications" conducive to success that I may have missed?

Regards, - Dave  

Meg Mangin R.N. wrote: Dave,That's a great list. I would add:

-The willingness to adapt your lifestyle to avoid sun/lights, including looking unconventional covered from head to toe and wearing sunglasses indoors and out.

-The willingness to give up some favorite foods.

-The capacity to avoid or severely limit sun/lights if still employed or responsible for raising children.

Best,

Meg
Big John wrote: Hi Dave! I would like to add to your list,
 
in my opinion it is of paramount importance to be in touch with your body.
 
Sounds kinda esoteric, however, it is most important to get to know your body and how it reacts to the protocol. To become aware of minute nuiances that take place. How the body reacts in a herx and with different medications.

One also must understand ones mental health.
 
Some of us become depressed or frustrated from time to time with the continuous pain, continuous herxs. 
 
My point "Willing to accept support and know when to ask."
 
John



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
Location: Australia
Posts: 19523
Status:  Offline
 Posted: Sat Feb 19th, 2005 04:04
Member Testimonials:

See this private conversation shared:

Conversation re: MP & CFS


Personal, Family, Relationship Tips FAQs and personal experience

ALSO: check additions to

MARSHALL PROTOCOL SUCCESS STORIES Members Testimonies of their improving health >> individual LINKS here


@ Phase One Alumni Forum

TESTIMONIALS to the Need for Avoiding Light
Member's personal experiences

THE IMPORTANCE OF AVOIDING INGESTED VITAMIN D

Food tips & explanations & Testimonials


RHEUMATOID ARTHRITIS has links to Member experiences

CHRONIC FATIGUE SYNDROME and Th1 inflammation: includes links to individual Member experiences of improving Health

Post Treatment Lyme Disease Syndrome
Definition, symptoms, transmission, testing, treatment,
MP Member experiences.

MENTAL ILLNESS and Th1 inflammation has links to

Bipolar: personal experiences on the MP



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


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 Posted: Mon Mar 21st, 2005 19:34
Taking Personal Care:

Most of us have been so accustomed to being so unwell pre MP, that we consider quite considerable herxing is all bearable and managable because of the stoic strength we have built up, especially when we think MP is getting us somewhere.....

MP makes our body work as hard as we push it to... and there is no hurry.. it is best ie more comfortable for us (& our Family) & safer to go a little slower so it is not so hard on us all.

In MP if we push too hard, the somewhere we think we are going to, gets further away.

Phase 1 is a training ground for learning to manage the meds and herxes in a safe manner, ready for the much bigger phase 2...


Rest is also a very important part of managing and healing.. make sure you are having adequate rest. By pushing our bodies to the limit of tolerable herxing we are working our body to capacity.

and so also is contact with support and encouragement by private message and or email to each other...

If it is any consolation, you are definitely not alone. The first thing I do when I wake up is to check to MP website and read all the new posts. It's amazing how many others are going through this. Ideas for diversions: books on tape, DVDs, talking on phone, reading this website.

Just keep on keepin on and remembering that you WILL feel better.


Dr Marshall says >> @ link> Exercise

At ILADS, one of the presentations suggested that the endogenous cortisol (corticosteroid) produced by the adrenals during exercise might not only be fuelling the feelings of euphoria, but also protecting the bacteria. I don't know that I fully agree with him, but it is an interesting postulate. So please make sure you keep the abx dosage up at a point where you are herxing nicely...

..Trevor..

Aussie Barb wrote: >>

 << from this topic Intruding bad thoughts here..


I wrote: I have just remembered:

that at times I have experienced intrusive self deprecating, incriminatory of (supposed) guilt / wrongdoing, anxious agonising depressive thoughts..... from toxicity? both pre MP and MP.

pre MP I used charcoal tabs to absorb the toxins and that worked well.. but now it is too difficult to fit the charcoal inbetween the MP meds so that it is not absorbing them. better not to try IMO.

These days I find it is relieved by taking my Benicar 20mg Q3h / day; and 40mg / night; and sometimes the Quercetin helps; and sometimes it may happen when my abx dose is due or due to be increased.

One thing I find most Important is to recognise it for what it is when it comes along ...... that the thinking is not *real. to KNOW that it is *sick.  that these thoughts are simply Not True..

it took me some time to get into the practice of recognising that I was being conned, & to remember what to do when it does present. faster recognition of both comes with practice..

for me I feel that it comes from my gut and not from my head.. if anyone can work that out..

and then to either remember to eat, helps. & I need to and do take my Benicar 20mg x Q3h all the time.  and have adequate rest. overdoing may exacerbate symptoms.

Trying to *combat* the thoughts has always been too exhausting for me, more than I could manage..  but I have found it interesting that they could be immediately resolved by taking Charcoal tablets which absorb toxins.

It is difficult for me to remember any more at the moment .. it may actually happen from the high 1,25D from either light exposure or herxing, so by keeping on top of all that must help..

I do know of others who have this experience; and I share this in the hope that You may find some help in it,  and comfort that you are not alone.

~~~~~~~~~~~~~

Further help may be gained by simple things:

particularly seeing to all aspects of bodily hygiene.... cleansing inside and out

to be removing all toxins built up from herxing.

Aspects to be mindful of:

sleeping resting as required.

For some, exercise or movement may be key. for others it may be too much.

clean mouth and teeth;

digestive system .. healthy diet: & keep all moving through..;

drink plenty of water;

the skin is the body's largest organ > regular bathing.

remember to breathe..

Being Light & D avoidant.

Taking meds on time

asking for help

~~~~~~~~~~~~~

I have been thinking about your depression and loss, and feeling of being a burden. and I wondered if it will help you if I share some of my experience with you...

When we have a change of circumstances due to any loss, whether it be the loss of a Loved One, our Health, and active Lifestyle, or whatever it is... we suffer Grief, terrible Grief.

Within the Grief we can feel all sorts of emotions including anger and disappointment and sadness and guilt. this is natural.

When it is the loss of Lifestyle and Health and we are dependent on another to care for us, we can also feel that we are a burden.

When we have lost anything, we have had a loss of expectation of how things were to be. If we continue to live in the disappointment we continue to grieve and we continue to lose even more Life.

It is good to feel the emotions and to understand them, and where they came from, and to listen to ourselves.... and then it is also good to know when it is time to adjust to the new circumstances.

We so often judge ourselves by what we used to do or used to be. How much fun are we to live with if we are sad all the time? if we are thinking and or saying, " oooohhh I am a burden to you."

I too went thru the guilts of being dependent on my Husband and Family, but once I realised that I could not do anything about it, I decided to learn to accept it.

Part of that is learning to open our mouth and ask for exactly what we need.. to be open and honest so that our needs can be met and so we are not carrying pent up resentment about what is not happening. this does take courage to begin with, but becomes easier with time. and makes for better relationships.

I now know that I am Gift just as I am. I am still Present! I have a smile and Love and laughter within me. By knowing and Living that, I have something very Valuable to contribute to the household and maybe even to the world.

Getting to this point is a process, it didn't happen overnight. It does take time.. but most importantly, what it does take, is a Decision to Be SomeOne just as I am.... not as I used to be... but as I am now..

I have been unwell so long that I have no comprehension of what good Health that I am fighting so hard for.. even means... something inside me will not stop fighting for it.

I share this with you in the hope that it helps you to know that others do go thru the pain and that we can come out the other side. to show you what Hope looks like.

PS. and that is with me lying on the bed all day unable to contribute to the workings of the house per se.

...  Being able to resolve some of this with Dr or counselling help, and along with your Rx meds, and any help we can give you re MP meds, may make the difference in being able to continue your MP.

Barb ...

~~~~~~~~~~~~~~

News Flash: MP brings me / us *out*.....

3 years ago, My Children having now grown, I made the move away from the Community where we had always lived. I needed to be in a type of cave away from all obligation & not wanting the phonecalls or visits, I had passed my contact details to few.
 

Recently through doing MP I MySelf have been coming to terms with what the Truth is,
 
I am finally being able to give the heave ho to those taunts of *wrong thinking* etc that we have endured for soo long... finally being able to acknowledge still yet slowly for MySelf, that I AM in reality > sick,  that we have indeed been / are very very very ill, and that only our great strength and endurance has kept us surviving.
 
The understanding of MP has shown me that I have no need to be embarrassed that I am unwell. Thru MP I am taking care of me in a very positive active way, and I will be doing it as long as I need to, thank you very much. 

This Month (Dec 04) I wrote my *coming out* letter & sent it out. 
>>>>
"Dear Family & Friends  

As You all know I have been very unwell for a very long time. 

This has meant that we have not been able to visit or to go to weddings, parties, reunions, get togethers, etc, or to even email or write to you or call you as we would like to. 

We haven't *done* Christmas for many years. 

I am undertaking a treatment which will take some time to complete, and in the meantime, I feel worse. It involves my avoiding light, and taking medications. I am hoping to find good health. 

I am conscious of Time and Lives slipping away. 

We have lived here for over 3 years. 

We invite You to visit us at our home  

@ ............... etc etc... " <<<<<< 

On a similar note, I received this letter from a CFSer friend also on MP >>

"In part I feel sweet sorrow that I might make it out of this illness alive and well while others, I've met too many, including one who I loved so much, have taken their life because of the incessant pain of whats only shallowly been thought of as a terminal mental illness which is now looking like essentially an infectious problem that has always been waiting there to solve.  We've been sick for so long and know things that folks that have always had their basic health can barely comprehend. 

But I think its time for this miracle to happen and we show ourselves as
well as the those already healthy folk the celebration  life is meant to be.
 " <<


I have been unwell so long that I have no comprehension of what good health may even mean for me. I have learned to live my Life one moment at a time, doing what I need to do in this moment.

Thank You Dr Marshall that we are finding Our dignity along with our Health.

Aussie Barb Quote:

"If I care for the Mother of my Children and my Husbands Wife, and my friends friend, I am doing the world a good turn.."

.................................

The Journey
by Mary Oliver
One day you finally knew
what you had to do, and began,
though the voices around you kept shouting their bad advice --
though the whole house began to tremble
and you felt the old tug at your ankles.
"Mend my life!" each voice cried.

But you didn't stop.
You knew what you had to do,
though the wind pried with its stiff fingers at the very foundations --
though their melancholy was terrible. 
It was already late enough, and a wild night,
and the road full of fallen branches and stones.

But little by little, as you left their voices behind,
the stars began to burn through the sheets of clouds,
and there was a new voice, which you slowly recognized as your own,
that kept you company as you strode deeper and deeper into the world,
determined to do the only thing you could do --  

Determined to save the only life you could save.



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
Aussie Barb
Research Team


Joined: Thu Jul 22nd, 2004
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 Posted: Sun Apr 10th, 2005 22:46
How can I get my Partner / Family to support my MP? Self Care tips

Partner / Family Understanding:

We, with the support of Our Family need to have the full understanding and the full conviction to do MP, so that we may do MP with as much ease & comfort as possible.

"The longer I am on the MP, the more that I realize how important it is to understand it - to a depth that permits a deep personal conviction regarding its value and validity.   Such conviction is essential to carry a patient through the many challenges it poses.   

My experience would tempt me to give the following advice to those considering the MP; "If you don't understand MP well, and don't feel a strong belief in its validity and potential - don't even try it"."- DaveW


How can I get my Partner/ Family to support my MP?

My Personal Experience Only:


Sometimes we think we need to protect loved ones from what we are going thru.

My Rule # 1  I need to be honest with anyone at all if they are to begin to understand what I am going thru.

that of course begins with being honest to MySelf.

To ask MySelf: How am I? really?

Can I do? this? this? this? 

Can I do what is being asked or expected of me? ...... NB ie. without harming MySelf?

Have I learned to say No? Have I learned to be Honest? Is it time to start taking care of me?? .... properly.....

The Best part of all this is.........

that by taking Proper Care of MySelf ..... I am able to give the Gift of a healthier more able Mother and Wife and Friend to all who are looking to that from Me

My Husband / loved Ones did not understand at first. then eventually I involved him in it all.  and.... I have become confident in MySelf to ask, and now, the last 3 years in particular, he takes the Greatest Care of me.  and of course if I'm Happy, he is too.

My experience of MP is that I need to give MySelf this time to do this job as it is supposed to be done, properly. for the MP and ME to have an honest chance.


the sun sensitivity will ease up in time with the MP..

In the meantime please know you have lots of friends who do know & understand. I find that once I am confident in my own mind about what I am doing, I don't have to worry what the *other people* think...  I have found it best to work on me in that department so that I can state my intentions as a fact rather than a question. eg I will be doing or needing... *this*... so how can we best achieve that?


It is absolutely vital to take care of OurSelf properly when doing the MP and to do all aspects of the MP properly.

I bought a timer for taking my Benicar. I couldn't do it without it.

I used to attack and torment MySelf with this thought of being a *lazy* one. we all have the *old tapes* playing..... till we throw them out & replace them with new ones.

Now when the torment comes up........ I remind MySelf how I have gone like a madman the minute that I do have any strength or energy:  and when I remember this then it is easy to overcome the lazy label.

I was *searching* for a better way.  I almost gave up, but I woke-up to it.  I was ready to make some changes for MySelf.  to *do* something. for me, for My Life.

and what I have learnt is this.

I had to *make a decision*  for my life to be changed for the better. It was not going to "just happen" *sometime*.

When I feel discomfort: it is "what do *I* do about this? knowing now that I am the only One who can.

I always heard that to have better relationships that it was *I* who had to change, not the other person. 

I thought that this meant that *I* had to become *nicer* and *nicer* to the other/s. but what I learnt was that it meant I had to be *nicer* to Me. that when I learn to respect Me, it works better.

This took courage and it took time, but ohhh it has been worth it.

and after I learnt to say No........ I have had to learn to ask for help and support.

How have I been able to possibly learn to make such changes?? from the stoic & hard .... Practice...  and getting thru, pushing thru My (own) Fears.

when is it time to reach out and grab for You?

You are Worth it!!!!:dude: Best Wishes, Barb


Information @ Personal, Family, Relationship Tips and these topics:

'Now, you just concentrate on getting better' looking at the effect of doing so

ADD Dec 8th 2005: Aussie Barb Post

ADD Jan 20th 2005: Aussie Barb Parade of memories

other Family Links: How do I know if I can do this?

Should couples do the MP at the same time?

Family adjustments to MP


Letter to Family 

Catlady's personal observation...



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|

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