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matthew.gatenby
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Posted: Wed Mar 11th, 2009 01:24 |
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ok day 2 since i have taken my 50mg dose ...
since being on the mp i have felt the following
ive been sleeping better - was always having interrupted sleep
more energetic - ive been cleaning the house every day , no sick days
they were getting regular. 1 a week or some form of time off or avoidance
brain fog - i was unable to think or write clearly , i have temporary lapses in this
but it has improved out of site
tinnitus - this was bad sometimes before but i have had very minimal since
since being on the mp .. i have had
runny nose
the intermittant ice pick headache ok these are not good , but i had them pre mp, but they just seem to have changed sides
asthma .. ok i started getting asthma mid 20's and i was a smoker ...
since i quit smoking cause it got too bad then later diagnosed with lung sarc .. you and i can prolly guess i never had asthma ..
since quitting smoking , not much asthma ... since ive been taking antibiotics , i am getting a bit .. its nrot very bad but i notice it ..
its strange i take my antibiotics at night .. the next day is usually a good day
then worst symptoms seem to be the day after the antibiotic day ..
additionally i seem to be getting the paresthesia and the shakes .. trembling in the hands
the paresthesia seems to change locations it does not seem to make up where it wants to be.. however it is lessening and getting better
how do i feel in general.. brand new !
i really do feel good .. the positives in just welness and personality is remarkable .. since starting the benicar and even the antibiotics , i just feel great .
and i guess thats the thing i want to keep reinforcing on my posts .. just in case others are reading them thinking about this .. isi post my symtoms to reflect , when i am not feeling the best .. its my tracking system..
but i dont want to deter anyone by the negative .. there were a list a mile long before and i really am feeling good
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matthew.gatenby
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Posted: Wed Mar 11th, 2009 05:15 |
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josh thanks for the ideas about the massage , actually when and got one yesterday was good
i have burning toes today .. the ones that used to feel numb .. for some reason this i see as a good thing .. anyone else have this after numbness ..
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matthew.gatenby
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Posted: Wed Mar 11th, 2009 23:35 |
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ok today 50mg mino last night
this morning noticed i have woken up 2 x mornings with no dead arms
have bad headache right side
yesterday it was left .. can it make up its mind , about my mind please , lost hearing one ear all of a sudden and returned as quick .. was very strange
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Barney
Moderator
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Posted: Thu Mar 12th, 2009 00:38 |
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Matt,
You tickle me.......but I love the way you think outloud.
Yes, welcome to the world of MP 'bugs'. You'll find out where you have bugs you never knew you had.
Hang on for the ride of your life and recovery.
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 Mar 12th, 2009 01:24 |
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Barney ,
if i can give a person a laugh with my brazen case of foot in mouth disease or my love of typing the simpliest of thought its worthwhile me posting my junk..
i wonder if the mp can cure foot and mouth .. perhaps other members can let me know 
the big problem is barney is i am like this in real life , i am loud and laughing ..
but i had not been for months .. until started this .. like i said perhaps placebo .. but i dont think so the benicar/olmetec .. cleared up my brain fog if it keeps it away i will stay on it for two life times ...
plus .. it smells good .. or mabye its just because i can smell it..
who knows ...
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Barney
Moderator
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Posted: Thu Mar 12th, 2009 02:17 |
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Matt,
I am so glad that your 'real life' is returning.
I read your posts to my husband and he laughs with me. (he is loud and funny too)
Glad your brain fog is gone, but look out for that Mino....its a real brain fogger.
Please...keep up your good posts of how you are recovering on MP
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: Fri Mar 13th, 2009 07:44 |
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Ok , now i think i know whata herx is .. took a 50 mg mino today
and boy i feel yuk ...
i have had pains in the lungs
and back ..
which mad me take some benicar under the toungue
**mmmm delicious .. i think we need to petition for some flavoured ones**
then i got home and 2 hrs later
i am heavy like all over , if this is any reseambalence of cfs .. that is tough. real tough.
i have nausea
trembling...
i have abdomen pain ...
and to top it off i have a temper ...
so go get f&%$ .... just joking ...
but i am very snappy
i am off to annoy bacteria with some more benicar in a min if i am not improved
soon
also i have notice4 my tempreture is getting a bit low these dayd .. 35.0 degrees celcius
any ryme or reason ppl
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matthew.gatenby
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Posted: Fri Mar 13th, 2009 08:15 |
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| ok i have these white patches on my feet were not there last night , they are on one toe , middle and heal like dead skin , noticed as i took my shoe off any ideas ?
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matthew.gatenby
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Posted: Fri Mar 13th, 2009 22:00 |
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my white patches seemed to have cleared up today .. my hands are very shaky , trembling i have been having this a lot in the morning...
i had a terrible nights sleep and right pain in my stomach today..
other than that i got to get up and get going
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matthew.gatenby
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Posted: Sat Mar 14th, 2009 23:52 |
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i have a really sore right side abdomen started off weeks before the mp ..
about dec as just nausea and like a sharpish pain
now it feels like someone has kicked me in the stomacha few times
i seem to be also really shacky in the hands been this way every morning for a few hours .. like i have been using too much asthma spray but have not .
in nov i had a ct contrast showed no probs in organs liver gall bladder pancreas
end of feb i had a mri no contrast showed no probs in abdomen ..
dr thinks i may have stomach ulcer , done the helbacter pylori test returned negative..
can anyone recommend anything .. i am trying milk thistle as i had elevated alt .. but just does anyone recommend any tests or actions to be taken..
otherwise i will just leave it in my gps incapable hands.. jaded , yes ..
and i will bring it up with my mp doc when i see him .. eom.
blood pressure has taken a dive .. i have been sitting pretty 120 /130 sysytolic 70/ 80 dyastolic
today 110 / 60 .. this is new.. i had high blood pressure before , but it strated around the same time i had symptoms starting and after the dr putting me on bp medication that didnt seem to effect it , and me asking why i had high blood pressure what was the cause , and being told i was overweight. and me saying well i been this weight for years why now and dr saying i dont know .. lossign weight and still seeing no difference , i am wondering when people that had high blood pressure saw it returing to normal . i think it is way to early in the mp for that..
anyhow i will look for some stats.
i am going to be posting a lot as my g/f heads off to the maldives today to go visit her family .. i am going to be bored .. but least i wont be surrounded by sun, light and mother in law , i will have a chance to go snorkling again .. but not right now
actually on the subject i booked my holiday this year to the snow .. i thought hey i can completely cover up , they have some night activities , and its been years ..
really looking forward to that ... either that or its going to the artic circle...
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matthew.gatenby
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Posted: Sat Mar 14th, 2009 23:52 |
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| shakey hands makes for great double postings Last edited on Sat Mar 14th, 2009 23:52 by matthew.gatenby
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JRFoutin
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Posted: Sun Mar 15th, 2009 00:41 |
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Matthew,
My blood pressure did not go down for several years on the MP. Some symptoms persist, while other symptoms resolve rather quickly.
CHART
One thing most folks fail to do on the MP is chart their own progress. You make a much better partnership with your doctor to make clear headed decisions on dosing and when to ramp when you know your own response pattern. Linear posts are helpful one way, but charts give you the big picture patterns that get missed with linear text messages.
Phase 1 is the best time to pay close attention and there are a number of different ways you can chart, but charting and posting frequently will give you the best opportunity to review your IP responses and understand your pattern of response.
By reviewing my response pattern, I was able to determine the best time of day for antibiotics and could choose when I wanted my response to be more pronounced (I chose while I was asleep). Others wake easily, so that might not be their choice. But the idea is to figure out what works for you by looking at the big picture.
Charting meant I really didn't need other medications other than the MP because I had a good handle on when the IP would hit and when was a good time to ramp and when to take other action. This information was quite helpful when discussing prescriptions and changes in dosing with my doctor, too.
You can find some charts for phase 1 here.
Make your own spreadsheet or just use graph paper, but the best time to do it during phase 1 for the best insights on what your response pattern is before you get to phase 2. After that, phase 2 is a great time to chart because you will be taxed to the limit otherwise. The best charts might even include food and light details because those do make a difference, and sometimes a spike pattern isn't seen until the next day or so.
REST
Most people think they don't need to rest while they are recovering from disease, but the rest is an absolute requirement with immunopathology. Time to hang up the toys for a while and do feet up time resting. Your body has to clear out a bunch of dead cells and that kind of cleanup requires rest.
FLANK PAIN
Flank pain can be any number of things as a lot of immunopathology hits there. It's pretty popular with those on the MP too. I had my fair share, but the idea is to keep your symptoms tolerable. If they are not tolerable, you may consider taking one of several options to take the MP at a more tolerable pace. Here is some information that might be helpful:
liver/gall bladder
Diagnosing flank pain
Best to you Matts--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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matthew.gatenby
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Posted: Sun Mar 15th, 2009 01:39 |
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Hi , and thanks for the good information and advice, i am actually charting my progress and going a bit geek on this subject by creating an application that involves charting , doasage , diary , ip and planned path vs actual graph .
this will take me a little while but once i get it done i will distribute ..
so people can track there things with ease at home .
the graphing aspect per person is my aim .. ip vs dose vs time date
so you can see visually where your at with your medications you can see your symptoms and timings individual vs this time and date . .. so you can see i am bored
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jayemcee
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Posted: Sun Mar 15th, 2009 05:10 |
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G'day Matt. I see you were "sitting pretty" when BP was 110 or 120 over 70 or 80. Mine used to be roughly that only when I was on BP tabs. When I started on the MP it went very low -- 66/48 --the day I passed out, but was usually around 75+/56+.
A couple of times while watching a Medical program on TV, the paramedics or doctors have been panicking because the patient's systolic pressure was "nearly down to 80 and we're going to lose him", then all this rush around and panic. I remember turning the tele off one night and going to bed before they scared me any more.
However, MP says it is only the disease, so I resigned myself to low BP, even though my paramedic son and chemist sister and brother in law, and my 2 doctor nephews are concerned about my low BP. Well I have survived, and the amazing part is that in the last month it has been reasonably "normal" again.
Pity about missing out on a trip to the Maldive, but like you say, your time will come. We've got to stick to the programme and get these rotten bugs out of the way, and then we'll have quality time for all the other things .
Liked your idea of flavoured Olmetec. Spearmint would go good under the tongue . Cheers, Jan
____________________
Fibromyalgia/CoronaryArterySpasmSyn/Arthritis/CFS/Angina/Glaucoma/Sleep Apnoea/SpinalDD/RLS/Insomnia 1,25D45.8 Ph1Nov08 ModPh2Feb09 25D13.6 Jan09 Duotrav NoIR's covered up, low light
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matthew.gatenby
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Posted: Sun Mar 15th, 2009 23:42 |
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thanks for the message , i am glad u liked the olmetec flavoured idea.. and reading your ost i had a thought.. i will find some appropriate lollies , sugar free or whatever .. and when i take an olmetec under the toungue i will put one in as well .. cant hurt try can it .. yum yum
glad to hear your bp is returning to "normal" it is funny i was quite afraid of the blood pressure thing .. but having high blood pressure i thought i would go ok.
i looked up low blood pressure on the internet , and unless you have a illness driven low blood pressure .. ie heart failure there really does not seem to be a danger at all
except from passing out and hitting you noggin. i say that in jest , but it is actually the most significant..
just another thing the mp is teaching what we can get by with that general medicine has not really ever paid much attention too
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matthew.gatenby
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Posted: Mon Mar 16th, 2009 07:04 |
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chocolate is ok yah.
i bought pancake mix - white wings ... made with egg whites .. how sweet is that
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anniev
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Posted: Mon Mar 16th, 2009 21:56 |
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Matthew,
I don't think that "lung sarcoid" is an "only", I think that it's a biggee! I am on the Marshall's Protocol for a lot less serious symptoms, skin issues-Rosacea and joint inflammation.
So keep going! I will always wonder if the American actor, Bernie Mac might have lived longer if he had started on MP..
Remember what Barney said, that taking the Benicar 4 times each day will help with the symptoms (if I understand it correctly, the Benicar "blocks" any more bacteria/ bad guys from growing/developing and then the antibiotics/Minocycline, etc. kills the crud that's already in your body).
You may only learn by experimenting, but if you take 1/2 of a Benicar-20 mg. or a whole-40mg. before going into the sunlight or when symptoms are bothersome, it really helps. One day I thought that I had a raging ear ache and needed to go to the doctor, so I called my MP doctor, she told me to chew a Benicar, hold it under my tongue for a few minutes then swallow it with warm water or tea. Within 1-2 hours the pain decreased and decreased till all of a sudden I forgot that I even had it!!
It's wonderful when you start to feel better, keep up the fight, when you eat a sandwich, check if your bread has whole wheat flour, stay away from white or unbleached or enriched flour, every little bit helps and whole wheat is so much better for you.
Good Luck, Ann
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matthew.gatenby
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Posted: Mon Mar 16th, 2009 23:27 |
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annie,
thanks for your kind words.
i hope you are doing well on the protocol
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matthew.gatenby
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Posted: Tue Mar 17th, 2009 00:23 |
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I am thinking about ramping up to 75mg mino
i have been on 50mg for 9 days had some herx, last bad day a few days ago but generally ok ..
i mean i was just downstairs in a car park throwing a football around .. this new energy level for me is great .. i cleaned the house yesterday and done a lot '\
i gwet tired from it .. but nothing to bad ..
am i pushing forward a little to quickly or should i just give it a try..
i will be seeing my mp doc on friday ... should i just give it try ... i just feel 9 days on 50 mg isnt long enough. does it hurt if i dont get any significant herx. and just sit back on the 50mg for a extra 2 weeks ..
or is it worth getting a vit d test done , i been (i think) pretty good with my foods .. just tryigt o chip away at coffee , alcohol and folate in my intake at the moment ...
i think i am answering my own question here .. i think i will streach it out , this is going to be a long path and i have 3 months to get to 100mg , i guess i shouldnt been in such a hurry.
i have a course next week so i would like a good run.
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bobsyouruncle
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Posted: Tue Mar 17th, 2009 05:42 |
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Hi Matt
I am just one step behind you (still 25mg Mino), so I have been reading around about when to ramp up. I found this link interesting:
http://www.marshallprotocol.com/forum32/1166.html
I have had Gilbert's syndrome for a long time (simply meaning my liver may process certain medications and substances more slowly). I have always observed that my body seems to take longer to get rid of alcohol as well, so I don't drink (cause it really is not fun if I do). I have noticed that my herxing does not happen 24hours after taking the Mino, but more gradually around 28-36 hours and continues after 48 hours. The article above suggests that for some folk 3-5 days might be more a appropriate cycle for Mino dosing. I am going to experiment with this. From what I understand if I take the Mino too frequently (relative to my own pace that might mean every 48 hours), the level of Mino will become too high and merely be palliative and I could just Herx too lightly.
Just a thought. It concerned me as I too am tempted to rush through phase I.
Advocates ... I'd appreciate your thoughts as to whether my thoughts are right ...
Bob
____________________
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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