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matthew.gatenby
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Posted: Tue Feb 10th, 2009 05:23 |
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Number 1 - diagnosed with sarcoid of the lung
having body mri and blood test for vitamin d
have found a doctor that has practiced Marshall protocol
already trying to avoid vitamin d in foods
going to order noir sunglasses .. just waiting for their reply .
Number 2 . i have just realised i am on benicar - olmetec ... . i have a 20mg dose a day for high blood pressure.
and i was diagnosed with a infection and given doxycillin.
what should i do because to me the doctor has given me something very close to the marshal protocol by accident what should i do.. i was goint to continue as i am till i see the doctor.. stop all medications and start from the begining . (guess why i dont think most doctors Are worth anything)
Number 3. High doses of benicar - whats the risk
Long term use of antibiotics whats the risk
Number 4.
I live in western sydney and the doctor i have been referred to is in the city over 30kms away. i still want to see this dr as he has other patients and i want somone with experience , but my local doctor is a by the book kind of guy , does anyone have a doctor in the western suburbs of sydney i.e parramatta , westmead , castle hill are that has used the marshall protocol and they like.
Number 5. i have a gf she seems to be suffering from some strange things , weight gain , tiredness , could she have sarc also and not realise it.
Is it worth trying her on it.
Number 6. Herx.
is it possible that i already experience some type of this without medication , i mean i get diziness , pains , nausea and headaches...back pain ?
in will add more as i think of it .. anyone that provides any feedback .. it is greatley appreciated
*** as i side note i read a article called the marshmallow protocol, from a roid rager at inspire or one of those sites who's obviosly popped one too many.
For anyone that has read it , i think you will have a laugh with me his is one guy with a good sense of humour .. thats surronded by tragics
firstly .. hes suffering with sarcoid that is getting worse , Trevor Marshall isnt.
all of the people on the site just complain of how bad they feel.
I have a great regard for all on this site and willing to try this protocol for the following reasons ,
a/ you have to go against the flow of the medical profession and they can be stubborn
b/ you choose to fight and take an option and try to win vs those who accept what they are told by somone no smarter than them.
c/ risk , life is a risk and about adventure and attempting things and failing them , thisn is your life you are living it your are living it . you are teaching values to those around you of hope , persistance , intuition and compassion and i am not even talking about your fellow sufferers .
god bless you all.
If there is anything i can do for others on this site or in my local area i know some of you are incapacitated with your illness , i am happy to assist.
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matthew.gatenby
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Posted: Sat Feb 14th, 2009 21:53 |
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can anyone give me an answer about back pain , i seem to get it bad and i wake up with dead hands , pins and needles kind of think, any tips any recommendations for chiropractic vs osteopath, physio ?
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matthew.gatenby
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Posted: Sun Feb 15th, 2009 04:29 |
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can someone please tell me why..
i am sweating profusely.
i am currently dripping from head to toe.. should i go to the doctors .. has anyone had this experience ?
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Sallie Q
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| Location: | Hope, Australia |
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Posted: Sun Feb 15th, 2009 07:08 |
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Howdy
Can’t tell you why u r sweating but I do,
at first thought it was menopausal but it just did not pause for 25 years.
Has been less frequent after a few months on MP
So good luck
Sallie
PS what you are doing aint close to MP until you are on minimum of 120 mg benicar per day. Keep poking around both sites there is a lot of info on benicar , appears extraordinarily harmless at doses way over conventional use , and is pivotal in MP both protecting organs and promoting immune response
PPS there are fast trains to the city, I live in the city and work at Parramatta
Here is instruction I have been learning on how to google adapted from an example using 'iron' which I replaced with 'herxheimer' for your question:-
To pare down a search for herxheimer:
+ herxheimer +back-pain site:marshallprotocol.com
Note the site: command will limit your search to just this site and the little '-' between words means that they should be in close proximity to each other. '+' keys mean the terms must be somewhere in the citation -- and you can use something like +"how much" -environment (skip the 'iron' in environment!) to get even more accurate positioning.
____________________
Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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matthew.gatenby
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Posted: Sun Feb 15th, 2009 09:58 |
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sallie , thanks for the reply ...
i am in it so i am a bit of a googler by trade, i guess what i have been looking for is just somone to review my posts. as i was concerned my doctor has marshall protocolled me u expectedly.
i have been readin constantly and i have chosen to give up the meds currently prescribed to me until i go on the mp.
the reason i got to this site was because of a google search about an antibiotic prescribed to me .. and decided hey i will do this.
but have realised the reson i have been feeling so crap the last few days was because my medications have the same base as the marshall protocol just not enough benicar and way to much antibiotic.
the good thing this has to tell me is i herx. it has also explained why i have felt like crap (more so for a while) .
so .. i am just going to avoid the antibiotic prescribed for other reasons and just stay on my small dose of benicar till i can get all sorted with the meds and the sunglasses
i think ill limit my posts from now on ..
i find it theraputic to post but it seems i just come accross as some lazy guy.
otherwise sally thanks for your input and take care .
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bobsyouruncle
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Posted: Sun Feb 15th, 2009 14:33 |
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Hi Matthew
I am not a moderator/advocate. Rather just someone else with Sarc. I started out with stage 2 lung sarc, which 'went away' by itself, but then last year my sarc seems to either have come back or I just never knew it was always there. Dunno. I now have some of symptoms you do, with a few others.
Regarding the sweating thing. I get this too. Can't explain and it is usually nothing to do with the heat. When it comes on, I feel odd, and I just sweat. I read elsewhere "neurologic, metabolic, and other systemic diseases can sometimes cause excessive sweating". Fevers are fairly common with sarc.
I also get back pain. I have read that sarc gets into your bones and the sac like grows cause the pain. Myalgias (muslcle pains) are also common.
I have not started the MP yet (waiting for my NoIRS and meds to arrive), but after 2 months of controlling sunlight and reducing vitamin D, it certainly feels like a bit of herxing occurs as the Vitamin D level reduces.
Regarding the pins and needles ... CTS (carpal tunnel syndrome) and RTS (radial tunnel syndrome - elbow) is common against sarc sufferers. I have it bad. it started in my hands and then moved into my elbows. Now I get the tingling swollen feeling in my hands and feet and have developed arthraglia (arthritis like swelling and pain) in my hands and feet. I have even had parasthesias on face (very brief gratefully).
Regarding your girlfriend. Have at look at some info on contagion at: http://autoimmunityresearch.org/sarcoidosis.pdf
Thanks for posting. It is interesting to see what others are going through. Otherwise one gets to feeling isolated with a disease that is statistically quite rare such as sarc (I think 10:100000 amongst white and 40:100000 amongst black, research reports different levels).
All the best. Keep posting. I hope sharing experience helps. Have a look at one of the most recent posts by Knochen under my thread (Pre-MP - 2/11/2009) - I found it very useful. It is stressful understanding symptoms, but important maintaining perspective on them too.
Bob
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Sarcoidosis 2000. Sjogrens. Pituitary adenoma. Insomnia. Arthritic/muscle pain. Fatigue. DDD? Skin. D25Jan09 22.7, D25Nov09 18.8, D1,25 67.7 Jan09. Ph1 2 March 09. Ph2 9 May 09 NonMPmed: Lexapro. Ambien. NoIRs. Light/sun limited.
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matthew.gatenby
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Posted: Sun Feb 15th, 2009 23:42 |
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my 25- d levels
25D Conversion
77 nmol/L = 30.8 ng/ml
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matthew.gatenby
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Posted: Mon Feb 16th, 2009 03:45 |
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| so i read that 25 d should be under 25 ng but am i able to start mp
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matthew.gatenby
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Posted: Tue Feb 17th, 2009 02:19 |
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ok , benicar is used to activae vdr , and also for tolerating ip.
what is the smallest necessary amount of benicar required for the VDR activation.
is there any way of knowing wether a person can get by on less .. levels aor arb in blood etc
also
is sarcoidosis of the lung definately a th1 inflamination , what do i need to prove it , is it known because of how the inflamination occurs.
my doctor gave me my d level which i think is pretty good, i never drink milk and have stopped all seafood .. (that was the only thing vitamin d rich that i eat) just recently so i believe mine will drop low .. also considering i dont eat a lot.
i read som information about ui limits and daily intake but i am not sure where this equates to a current diet.
if i eat one meal a day and the occassional sandiwch .. as long as it is avoinding the vitamin d rich foods would that be alright ..
is there any food to vit d calculators
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Barney
Moderator
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Posted: Tue Feb 17th, 2009 13:06 |
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Matthew, (my grandson's name also)
I believe the Benicar, as you will find, will be 'your saviour' as you go thru MP. My belief is that you definite to make 40mg 4 times a day as your minimum dose. I use extra Benicar in doses of 20mg to relieve severe reaction from the sun when I HAVE to go out, for headaches (before pain pills) and nausea or runaway IP's.
Matthew, it sounds to me, that it would be advisable for you to read FAQ on Marshall Protocol.com to make yourself more educated at how the MP works to help you recover.
I have 4 yrs on MP and this is my experience that I am relating to you.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Chris
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Posted: Tue Feb 17th, 2009 13:09 |
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Sweating - your body is just flushing junk out. I had years long troubles with cold sweats, mostly as fever was breaking, but sometimes just for the fun of it apparently.
Starting: You can start the MP. Your 25D numbers are higher than the therapeutic level, but Benicar will help reduce that. Do you know your 1,25D levels?
Minimum benicar: Any level of benicar will activate the immune system to some extent, but low doses will make you feel worse as the blockade effect isn't there.
Following the ABC of MP,
http://www.marshallprotocol.com/forum32/2135.html
you get to: The need for a Benicar blockade
http://www.marshallprotocol.com/view_topic.php?id=2810&forum_id=2&jump_to=45256#p45256
And: Why shouldn't we ramp up the dose of Benicar?
http://www.marshallprotocol.com/forum32/1782.html
You've got a lot of reading to do yet.
--Chris
Last edited on Tue Feb 17th, 2009 13:11 by Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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matthew.gatenby
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Posted: Thu Feb 19th, 2009 03:32 |
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Today -
Yesterday - saw the mp doc , he has 12 patients all by the sounds of it differentiating in level of sarcoidosis , cfs. had nothing but absolute positive notes for all people he has see undergo treatment in the last 12mnths.
so i am feeling confident ...
he was not overly concerned about my 25d level at 33 and did not want to get my 125 levels tested.
ready to start the mp today
benicar - check
mino - pharmacy orded me in some arrives monday
sunglasses - check
bought a blood pressure monitor thought it couldnt hurt .
diet .. trying .. will chip away at getting better and better
today i have eaten some meat and thats about it and i will eat fresh veg
my diet will be ..
fresh fruit for breakfast
lean meat and vegetables for dinner
benicar dosing schedule is
40mg - 6am, 2pm,10pm
todays symptoms
nausea 6 C A
dizness 3 I A
flank kidney pain 3 C .
brain fog 6 I A
paresthesia (left arm) 3 C A
this is a record for me to review my progress
anyone who wants to review or speak to me all good.
any advice or input is always welcome.
anyone that lives in sydney and can tell me where they get their blood tested would be greatley appreciated. no one seems to have ever heard of a 125 test when i ask , i have had the response twice .
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matthew.gatenby
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Posted: Thu Feb 19th, 2009 03:32 |
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opps double post
Last edited on Thu Feb 19th, 2009 03:32 by matthew.gatenby
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Barney
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Posted: Thu Feb 19th, 2009 03:40 |
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Matthew,
I believe you would do much better if you took 4 Benicar a day instead of only 3. Benicar is a life saver for helping to control IP's.
Also....please make sure you get plenty of rest, sleep when your body tells you too and drink lots of water.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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matthew.gatenby
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Posted: Thu Feb 19th, 2009 03:56 |
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Thanks barney
your a good fella. and i appreciate your input .. i hope you are doing well
i drink lots of water and green tea, and a beer a day
and rest well i do have cable tv an internet connection and my job revolves around sitting on my bum so no stress there.
as long as i get clear of some brain fog this will be great .. otherwise i will make a pope mobile out of noir lenses and live in it and people can pass me stuff through a little hole in the side.
i am just starting out this week with benicar 3 doses then next week will jump to four then i start the mino , well thats what the doc said .. i want to start on 4000 mg of mino and 800 doses of benicar today and be all fixed by lunchtime friday but .. i guess this is a life changing event ..
i will learn - healthy eating
i will learn some patience
i will learn how much the people around me care about me assisting me and all being very supportive .
my work knows and are cool with any changes , so they might fire me sooner or later , we are going through cut backs and i havent been on my game as of late . but so far so good
, my gf goes to the doctors with me and is looking at the diet restrictions and trying to help me out. and just giving me a hug when i need it.
my standard gp who has taken all the information i collected home to read.
and the people on the site like yourself barney and chris , who even though probally think i should spend more time searching and less time typing ..
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Barney
Moderator
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Posted: Thu Feb 19th, 2009 04:16 |
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Matt,
Thank God for the girlfriend who knows you need a hug and is helping you with your healthy eating.
People helped Chris and I thru our beginning of MP and we need to help those coming in behind us.
I really don't see the need to ramp up on Benicar, but mind your doc's thoughts.
Really, Matthew, you do need to read as much as you can on MP....it will make it easier going thru the MP and recovering.
I have been on MP for 4 yrs now and recovering beautifully.
We are here to help you as needed when you can't find the answers for yourself!!
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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matthew.gatenby
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Posted: Thu Feb 19th, 2009 04:45 |
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i was given a medication maxalon from the doctor to take , been nauseas most of this month no appetite.
its called maxolon
Generic Name: Metoclopramide hydrochloride
Product Name: Maxolon
basically i cannot see it on the meds list .. however
i believe it has hydrochlorides and from what i have read hydrochlorides act as duiretic and i should not take them.
ive pretty much decided that i wont taker it .. so this is a posting just putting it out there
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JoshR
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Posted: Thu Feb 19th, 2009 09:17 |
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All kinds of chemicals come in a hydrochloride form, not just diuretics. For example, minocycline tablets actually contain minocycline hydrochloride. You may be thinking of hydrochlorothiazide.
As for metoclopramide, it's a dopamine receptor antagonist used to treat nausea. It's mentioned in What should I do for my stomach and esophagus problem?
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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matthew.gatenby
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Posted: Thu Feb 19th, 2009 21:07 |
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thanks . i will avoid the additional medication unless really necessary i think the simplest cocktail in my body will be the most effective.
2nd day on the protocol.
feel light headed and dizzy.
tired this morning , but actually a nice kind of tired.
i notice i get dizzy if i try some deep breathing.
however when getting up find holding my breath a great way to stop feeling like i was going to fall over. as i believe this is the blood pressure medication kicking in.
so just using the tricks for orthostatic hypotension
otherwise started feeling good last night .. actually felt like doing some housework .. thats rare even when i was healthy.
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matthew.gatenby
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Posted: Fri Feb 20th, 2009 01:06 |
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i suffer from this problem pre mp where i would get pins and needles and feel really like my nerves are going grazy and i get all emotional
i only have lung sarcoid diagnosed
my doctor is pushing for anxiety meds.
i have spoken to someone else with just lung sarcoid more developed and they do not seem to have this issue .
i have an appointment with a neurologist , running some blood tests and a distant future appointment with an endocronolgist.
i believe it is sarc related and all tests will show nothing .. basically has anyone been on anxiety meds for a similar prob.. this is jsut for anyone that browses along.
i have read some post but these are usually from people diagnosed with other issues.
i know i am writing this , not accepting the fact of the condition i have is not just the diagnostic signs of some lumps in my lungs. it a bacterial infestation throughout ..
it will sink in slowly.
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