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konrad.k.b
Member
| Joined: | Wed Jul 30th, 2008 |
| Location: | Denmark |
| Posts: | 5 |
| Status: |
Offline
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Posted: Fri Sep 5th, 2008 15:49 |
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Hello,
I would like to start with a quick introduction, and then
a short question.
My name is Konrad, I am currently living in Denmark, doing a PhD.
12 yeasr ago, when I was about 15 years old, I was diagnosed with
Systemic Mastocytosis. During this time I have tried a number of
different alternative treatments, without any success.
During the past 3 weeks, I have experienced two occassions of
fever and bleeding from the rectum. The doctors are telling me I may
have either Colitis Ulcerosa or Mb Crohn. It could also mean that my
Mastocytosis is becoming malignant, with the mast cells "attacking"
my intestines. I will need to investigate this.
In any case, and I am starting on the Marshall Protocol today. I have
glasses, the Olmetec and the Minocycline.
My question is, are there any other people with Systemic Mastocytosis
who have tried the MP? I could not find any cases on the study site.
Thanks,
Konrad
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Julia
Advocate (on leave)
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Posted: Sat Sep 6th, 2008 10:39 |
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Hi Konrad,
Some of the study site is not viewable by non-members, and the only mentions of mastocytosis are there.
A medical moderator gave this reply in 2006 to someone who asked, "Is systemic mastocytosis a TH1 disease?":
Mastocytosis is in my opinion a type of TH1. Most people with mastocytosis have MCS (Multiple Chemical Sensitivities) and an array of symptoms that mirror the experiences of many on this site. I have not noticed anyone yet posting a D panel with a definitive diagnosis of mastocytosis, but there may be a few who are undiagnosed.
He suggested that many MCS sufferers perhaps have mastocytosis as well, and pointed out the great similarities between the symptoms of mastocytosis and those of sarcoidosis.
So I think your decision to try the MP is a good one. It's great that you have a supportive doctor who is willing to prescribe this relatively new treatment. Can you get your D-metabolites tested? That would confirm whether you have Th1 inflammation.
If you can't get the D tests done, you can try a therapeutic probe, by beginning Phase 1 of the protocol and seeing how you react. Here are some more introductory links, in case you haven't found them yet:
"What is the Marshall Protocol?"
Simple Explanations
Papers for Physicians
Hypervitaminosis-D Symptoms
Success Stories
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
MP Memberships Temporarily Closed.
Please ask any further questions here at your own personal thread.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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konrad.k.b
Member
| Joined: | Wed Jul 30th, 2008 |
| Location: | Denmark |
| Posts: | 5 |
| Status: |
Offline
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Posted: Sat Sep 13th, 2008 19:31 |
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Hello Julia,
thank you for your answer.
Since I could find a way to test my Vitamin D levels,
I decided to start a therapeutic probe. I have been
taking Benicar for a week now, and today I decided
to start my first Minocycline dose.
About 5-6 hours have passed since I took the Minocycline,
and so far I do not feel any effect.
Does this mean that the treatment does not work on me?
How much time can pass before any reaction shows up?
Thanks,
Konrad
Last edited on Sat Sep 13th, 2008 21:20 by konrad.k.b
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Julia
Advocate (on leave)
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Posted: Sat Sep 13th, 2008 20:10 |
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Konrad,
Please make sure you follow the Phase 1 guidelines very closely for your safety. It's a good idea to print it out, one for you and one for your doctor.
What dose of Benicar are you on, and what dose of minocycline did you start with? Did you have any reaction to the Benicar alone? Are you avoiding daylight, and have you eliminated vitamin D from your diet?
It could take a week or more of mino to elicit enough reaction to judge that the MP is the way to go.
"However, if the level of a person's 25-D is above about 25 ng/ml then their immune system may not be able to kill the bacteria, even with the help of antibiotics, and the probe would fail. Thus the D-metabolites (at least 25-D) would also need to be checked." Dr. Marshall
It's usually easy enough to get your 25-D checked, as it's what doctors test routinely to see if a person is 'vitamin D deficient'. It doesn't matter if you can't get the 1,25-D done.
Let us know how it goes...
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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konrad.k.b
Member
| Joined: | Wed Jul 30th, 2008 |
| Location: | Denmark |
| Posts: | 5 |
| Status: |
Offline
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Posted: Sat Sep 13th, 2008 21:20 |
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I am on 40mg Benicar every 8 hours. The only
reaction from Benicar that I have noticed is getting
head rush sometimes when I quickly change position
from sitting to standing. Blood pressure is roughly
100 / 60
I started on 25mg Minocycline (I bought a small
tool to easily split the 50mg pills in two).
I am avoiding day light as much as possible,
although I have not avoided it completely
since I for example go do grocieries or go to
work.
I am going to check with the doctor if I can get
Vitamin D tests done.
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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
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Posted: Sun Sep 14th, 2008 19:41 |
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Konrad,
When you do go out in the light, are you using a zinc-oxide cream? Hat? Gloves? Long sleeves? NOIRs, or dark glasses? These things are an important part of light avoidance, and it would help if you noted such things.
And have you shifted your diet yet? It probably bites to have to give up Danish pastry when in Denmark, but sacrifices have to be made.
Fainting, lightheadedness, and fatigue are noted as common side effects for benicar. But what we find for MP patients is that these symptoms go away as you get healthier. So you probably have an early indication that the MP is going to help.
If your diet has been rich in seafood, it might be a while before your D,25 levels come down enough. So it's important to get the D-metabolites tests done to see where the 25,D levels are to avoid accepting a false negative on the therapeutic probe.
The1,25-D results aren't going to be reliable while you are on Benicar. But post the results anyway, but be sure to note that you were taking benicar when the test was run.
Chris
BENICAR-Basic Information (click here)
Do I need to get my 25-D down before I start the MP?
Why am I dizzy and/or fainting?
Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself.
: If necessary, lay low, stay in bed. drink adequate fluids, eat salty foods and wait for the symptoms to wane. Tools to check:
Does Benicar cause dizziness?
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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konrad.k.b
Member
| Joined: | Wed Jul 30th, 2008 |
| Location: | Denmark |
| Posts: | 5 |
| Status: |
Offline
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Posted: Tue Sep 16th, 2008 14:12 |
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Hello Chris,
I do have the glasses from NOIR, and I have shifted diet.
I mostly eat lamb or deer meat, sallad and some rice every
day. I have planned to make a break in my PhD work in
order to stay indoors completely for a few months. Winter
is approaching here, which means less daylight which is
good.
I do not apply any cream on my skin. I usually avoid that
due to the sensitivity caused by the illness. I do wear
long sleeves, but I could improve by wearing a hat whenever
going outside.
I think the best would be to get my D-levels checked now,
in order to make a better assessment on whether the
MP is effective on me.
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