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terrylmcc
Member in Phase 3
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Posted: Tue Sep 30th, 2008 04:15 |
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Hi John,
Welcome to the MP, I too was very excited, as you are. After years of inhaling steroids and continued decline in pulmonary function. You are in the right place.
One bit of advice, well maybe two.
1, SLOW ADN STEADY WINS THE RACE. I am often remeinded by my body to slow down. Take this advice, and really take it to heart.
2, LISTEN TO YOUR BODY, When you start feeling IP, or Herx. pay attention to it. In time you will learn what tools will work for you, to get things back under control.
I dont know if these bits will help you, but they are the two things that I keep learning and RELEARNING throught my MP journey.
My best to you, your Neighbor In Michigan. --Terry :-)Last edited on Tue Sep 30th, 2008 04:18 by terrylmcc
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Sarcoidosis/lung biopsy hx uveitis Ph1Jan07 ModPh2Apr07 Ph2Dec07 Ph3Feb08 NoIRs lite exp r/t to commute
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JohnMcC
Member
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Posted: Tue Sep 30th, 2008 04:31 |
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Hello Terry,
Always looking for good advice.
I made a pact with myself that I would take as long as this needs to resolve even tho' it may get bumpy at times. Haven't had too much IP yet - just enough to let me know that something is changing...
I have a sensation your points may have to become a mantra..
Thanks
John
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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JohnMcC
Member
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Posted: Sun Oct 5th, 2008 16:38 |
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Hello All,
Week one is complete and after a few boo-boos (after not having coffee for a month - I made a pot and was half way through cup # 2 and.....Doh!!!) it was good too...
Once I got some blackout curtains happening I started getting some IP - light sensitivity has started, muscle cramps and stiffness, old shoulder injury flaring nicely and some cardiac IP....
Cardiac stuff was interesting - 4 hours where my heart was pounding and I was just sitting quietly.
Lost about 15lbs -  I've been on a healthier diet for quite a while now, seems the change to a slightly lower carb diet.
Getting tired quickly - any physical activity is short lived and is usually accompanied by muscle cramps.
All in all a decent start - hopefully in a week or two (or three or four) I'll be ready to start M.......
Last edited on Sun Oct 5th, 2008 17:06 by JohnMcC
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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Deb Grabetz
Advocate
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Posted: Sun Oct 5th, 2008 17:11 |
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Hi John,
My grandparents immigrated to the U.S. from Ontario back in the late 1930's. All of our family from my father's side is still living in Ontario---so Canadians have a special place in my heart! I wish you my best on your journey....you will not be disappointed Deb  
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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JohnMcC
Member
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Posted: Sun Oct 5th, 2008 19:26 |
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Thanks Deb,
Been illuminating so far (no pun intended).
I set up a blog so my family could keep in touch during everything and they think that I've lost the plot, taking this too far etc etc (even my sis - a diagnosed sarc)
However with every IP, I get better & better...
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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Freddie Ash
Member in Phase 3
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Posted: Sun Oct 5th, 2008 20:08 |
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HI JOHN
This is Fred in WV. You said, "SOME CARDIAC IP...CARDIAC STUFF WAS INTERESTING - 4 HOURS WHERE MY HEART POUNDING AND I WAS SITTING QUIETLY." That reminds me back in the 1980s when I would tell my doctor I could feel my heart beating sitting but did not notice it if I was moving around.
I have had my heart pounding at night that I could not lay on my left side and had heart rates as low as 29 in the ER once. But thanks to the MP I can now lay on my left side and I now have a pacemaker that makes sure my rate does not get too low. Who knows some day they may tell me I no longer need the pacemaker and shut it down.
I am having a flurting & some missed beat IPs today. I have had a Stage 5 I think with that on Friday and some on Thursday. But we will make it becasue we have a person that cares for us in Dr Marshall and his over worked staff here looking out for us and helping us along the long journey to our great health.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1011 |
| Status: |
Online
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Posted: Sun Oct 5th, 2008 21:02 |
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| Someone may come along and slap me silly for this advice, but if you are having such a strong reaction to Benicar alone, you might want to take your time before starting the Mino. (Not offering medical advice here...just reflecting on my own quick start on Beni and move to Mino in 3 weeks. Wish I'd stayed on the Bene a little longer all on its own. Can't go back in time; however, I have read of some folk who do well by taking it slowly right from the start.) Slow and steady does win the race...and Mino can kick things into high gear when Benicar alone is already kicking up quite an IP storm. Claire Last edited on Sun Oct 5th, 2008 21:03 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Dr Trevor Marshall
Research Team
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Posted: Sun Oct 5th, 2008 21:17 |
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Yup. 'Someone' is going to slap you, Claire
This type of issue should really be discussed over in the report thread at the MarshallProtocol.com study site (if you are a cohort member) or in the new forum at the CureMy site:
"Non-medical support for those on MP" http://curemyth1.org/forum7/
I certainly appreciate Claire's and Freddie's help, but this is the incorrect place for the discussion We always anticipated that this MP-Lifestyles "How is it working out" topic would be for summary-type posts, not for giving/obtaining guidance.
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1011 |
| Status: |
Online
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Posted: Sun Oct 5th, 2008 21:24 |
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| Yep. Thanks Trevor. I needed that!
____________________
CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Freddie Ash
Member in Phase 3
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Posted: Mon Oct 6th, 2008 13:50 |
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HI DR MARSHALL
This is Fred in WV. Claire, me too!! Thank you Dr Marshall.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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JohnMcC
Member
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Posted: Sun Oct 12th, 2008 09:01 |
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Week 2 over and some interesting points/changes.
I have a Baker's cyst as a result of a workplace injury a couple of years ago, it has always been swollen (turgid) and restrictive. It has almost completely dissipated...
Gastro IP......yuk!
Roving cramps - not debilitating, but enough to require pain meds.
I am very light sensitive and even the 2% are not sufficient outside - I went for a short spin into town (about an hour total wearing noir's, hoodie and zinc oxide cream) and spent most of the next 24 hours in an almost manic IP state (neurological IP....don't ya just luv it! )
As we were invited to a friends for a wee taste of Thanksgiving - a nice challenge as the hour drive on a sunny day proved. I increased the benicar (Q4hr) to relieve the inevitable IP - can’t give thanks when you’re miserable…. 
- and just as well. The one hour drive in bright sunshine was quite harsh despite the fact that I increased the meds, was wearing my 2% noir sunglasses was wearing a hoodie over my face and had zinc oxide cream on all exposed parts (hands & face) Luckily I wasn't driving
It took some tylenol & advil and another dose of benicar on arrival to settle things to a tolerable level again - approximately 2 hours.
The company and the food were absolutely wonderful, the  turkey did itself (and all other turkeys) proud - a really good night.
As for the benicar - I noticed that the increased meds had an interesting effect. While sitting at home during the day about an hour after the first extra dose and again after the second, I felt what seemed like a cool breeze on a hot day - a gentle calming / cooling passing through me and I realised that I had been suffering IP from the previous days excursion and the extra beni had calmed it down. So, looking forward on this wonderful development, recognising the IP effects and getting back to a more useful state of mind will be critical to getting through this.....but then again y'all know that already....
One final point, I've lost about 16lbs so far and my BP has dropped 40 points (both systolic & diastolic).....my face seems different to me....kinda weird feeling.
The hosts for the evening were very gracious and make arrangements with my wife before hand and had a darkened room ready and also dimmed most of their house lights - I still had to wear 10%'s but was able to join in with everything once the sun had gone down......good friends & good food - thanksgiving doesn't get any better.
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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JohnMcC
Member
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Posted: Mon Oct 13th, 2008 04:16 |
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To add to the new knowledge, I decided that I would try to do relatively normal things go to the store, buy boy toys etc. London is enjoying beautiful fall weather 25 degrees & sunny....
I dropped to Q3HRS and I was able to get everything accomplished without the manic IP....of course I was wearing full MP uniform..
So now I now when I need to be fully capable - adjust the bene accordingly & plan for trouble.
I also have great new that my insurance coverage is paying for the bene.....just gets better & better.
Now back to Q6hrs and IP...
Last edited on Mon Oct 13th, 2008 05:03 by JohnMcC
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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JohnMcC
Member
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Posted: Sat Oct 18th, 2008 19:16 |
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It's been a difficult 3rd week with a great deal of light sensitivity and more learning curve.
I started back to work and have a nice dark room to work out of and pretty much all I need. Unfortunately, everywhere surrounding the room has fluorescent lighting so getting around the office has proved a challenge. Within a few minutes I get that luvly chewing tinfoil sensation behind my eyes, the top of my head feels like it's made of rubber and of course nausea....and this wearing my own made zinc cream (thanks Knochen) a hoody and 2% NOIRs.
I was too drained to work wednesday.
Thursday, I increased my beni to Q3hrs and made it through the day including a one hour presentation for one of the teams that I work with (room lighting was great but the bright screen made me feel nauseous after 30 mins or so....even wearing 10%'s) I went back to my cave and actually recovered quite quickly - I finished the day.
Went out to a restaurant for supper - The Outback. Low incandescent lighting, good steak & a healthy salad - cheated with a few Aussie Chips & a Guiness.....no negative reaction. Trying to get used to the "there's the unibomber" looks from strangers tho' - I suppose as I get along the self consciousness will fade.
Friday was a tiring full day but the Q3hrs worked to keep me going until I got home to my nearly cave-like haven. I then reduced the frequency over night.
So far today, I have a great fatigue with flu like symptoms and have not been able to last for 6 hours, so I'm settling for Q4hrs for the next few days to be able to function, along with tylenol and advil for muscle & ache control.)
I feel like the light crisis has passed for the moment and if I continue to get stronger over the next week, I'll start Mino.
Had a few minor cardiac responses today, tolerable but definitely there...Be still my aching heart..
Last edited on Sat Oct 18th, 2008 22:24 by JohnMcC
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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JohnMcC
Member
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Posted: Sat Oct 25th, 2008 22:06 |
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Good Lord, one month already....and the fun just keeps coming.
Finally managed to get back to Q6hrs today after a couple of shaky weeks and the internal balance has improved.
So far I have to limit my work to a couple of hours at a time at home (as I get sudden onset of flu like aches & pains, fatigue and brain fog) This eases after 1-2 hours in a dark place napping and then I go back to work.
I also have had cardiac IP in the form of palpitations and pounding for a couple of days now - not worrisome at this point, it's just there.
Fluorescent lights are very bad, I can manage in the evening at home without noirs if there is only one light on and have even managed shopping without too much response.
One thing that I have noticed is my stress tolerance is almost gone - I normally thrive on pressure & being able to cope with workload - I find that I have to shut down my email and switch off my phone because the result of not doing that increases the cardiac IP and brain fog and I am not able to cope emotionally. .... it passes
So the plan is to see if I can stay at Q6hrs, go to work and get through until Friday without a major crisis or needing to increase frequency....then start mino friday/saturday.
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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JohnMcC
Member
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Posted: Sun Nov 2nd, 2008 18:28 |
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Q6hrs has not been good to me, overall this was probably the least workable week so far. So it's back to Q4hrs and I seem to be balancing out. I have also tried to live without the overnight dose (between 11-6) - I just spend most of the morning trying get everything under control again, so I've set my timer to a 4 hourly again (6-10-2-6-10-2 etc)......the sleep be damned
I also started on mino on thursday so now I'm officially on the MP.....woohooo!!!
As a little introduction I woke up @3am with a heavy head cold to go with the wonderful flu like symptoms that I always have, in the form of sneezing, runny nose and a sore raspy throat......then it disappeared completely about an hour later, same with my second dose last night.
Just the mino cruisin the neighborhood to let the bugs know there is a new Sherriff in town....
I hope to maintain the Q4hrs this week and get back to going into work instead of work/nap/work rotation at home.
Managed out yesterday for a couple of hours wearing full MP regailia - seemed to cope with the electrical light storm at costco ok and the lovely late afternoon sun.....still getting used to folks being nervous around the noir's, hat/hoody gear....oh well.
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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JohnMcC
Member
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Posted: Tue Nov 4th, 2008 00:53 |
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Hello Admin,
Just a thought as I was ruminating today that my thread title is probably not where it should be as my mindset has changed since starting the MP.
A small favour to ask, can the header to be adjusted to have a tag line The first step of a long journey....or the last step.
Just a comment my wife made that all the illness/bad times that I have had, will go away and I can live without all the baggage and fear of the last 17 years. I can heal in so many ways..for the last time. So really this isn't the first step at all, my journey with TH1 started a long time ago.
I understand the mods are very busy and this is not a priority or essential by any means.
Thanks
John
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25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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JohnMcC
Member
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Posted: Sun Nov 9th, 2008 15:48 |
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Six weeks gone already.....I seem to recall some phrase about time passing quickly...fun....
My venture into mino land was interesting as after my 3rd dose I had a free day....I felt completely fine - no fog, little joint & muscle ache...no flu like symptoms etc. I did a little work around the house, worked in my shop, picked up my guitar....almost like a day before the MP..
Next day everything came back in full swing and I can now appreciate the difference.
My light sensitivity has altered - sunlight isn't so bad and I can function around the house using some low power incandescent lights. Florescents are oppressive and the response is within a few moments. I went out for a day trip of all things to look at a new tv, then a recliner and finally a couple of woodworking supplies - all in all 3 hours. I had to take a sublingual (20mg) after 30 mins or so and by the time I got home I could barely walk with the aching everything, I could not focus and I felt at a loss (fortunately I wasn't driving.) I took some advil & tylenol - I spent a couple off hours unconscious on the couch and woke up feeling better and was able to eat etc (always a good sign )
As for mino - I made a change in the timing (6pm) and I get woke up in the middle of the night with really bad chills, like my core temp has dropped - my teeth are chattering and despite wearing extra clothing I still take 2-3 hours to get "warmed" up. Other wise there is no other markable response.
I am still taking beni Q4hrs and I spent a week on Q6hrs and could not function.
This week I pump up the volume on the mino....
I've been reading about the continued "discussion" with Dr White (McGill) and I cannot accept his misguided & funded opinion - the sick folks of the world are being cheated - I look forward to a time when all doctors will spend their time trying to help their patients rather than use them as abacus beads. The ego of some of these creatures is something to be wondered at - and the death toll increases.
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25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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JohnMcC
Member
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Posted: Sun Nov 16th, 2008 22:01 |
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I made the mistake of moving my 50mg mino to suppertime instead of bedtime and paid quite a price with tolerable levels of reaction.
So last night, dose 3, I went back to bedtime - woke up at six for my usual beni and felt like I'd tangled with a brick wall, my hips, knees and ankles had sandpaper in the joints and the flu like muscle ache was really bad and I felt like my core body temp was down 5 degrees (teeth chattering cold......) but I was also sweating.
I took the beni (I was too sore to get up and get some tylenol) slept for another two hours and hobbled to get some pain meds. I last a couple of hours then had to rest - slept for 2 solid hours and woke up feeling "ok".
more pain meds and my usual Q4hr beni and thing have calmed somewhat - went out and did some normal stuff in the afternoon.
I have a 7 hour drive tomorrow and will probably have to up the beni for the day then see how everything works out. I have to get back to a more normal work schedule.
Looks like I have reached the promised land of IP and should be in the groove for a while...whoopdedoo!
note to self.....keep pain meds at bedside....
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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Deb Grabetz
Advocate
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Posted: Mon Nov 17th, 2008 11:05 |
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Heh John--- Good to see you are moving along as expected with the protocol. I noted that you take your abx meds in the evening. I have always chosen this method myself. Assured not only a good deep nights sleep but seemed to skip much of the heavier IP that I would experience.
I've taken at different times during the day to find that I too prefer nighttime dosing. You may find that the day dosing is sometimes out of necessity though!
Keep up the good work!
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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JohnMcC
Member
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Posted: Tue Nov 18th, 2008 14:43 |
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Hello Deb,
Phase one really is a training ground and I have made a couple of minor adjustments again and it seems to be helping me to function more usefully.
I managed my 7 hour drive with the aid of beni every 2 hours and two 30 min power naps at roadside - interesting reactions to a guy sitting sleeping in a vehicle wearing a hoody, gloves & dark glasses I half expected the cops to check me out....this is where a medi-bracelet may be a handy item
I went back to Q4hrs after arrival and although I was tired, I didn't have any major reaction....progress & a lesson learned
Getting enough sleep has been a challenge tho' and is my next focus...
____________________
25/04/05(25D-41 1,25D-94 ACE 35)
Diagnosed by biopsy Jan '93 Lung,lymphnodes, skin lesions X lots, depression, fatigue.
25/09/08(25D-30 1,25D-63 ACE 35)
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