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JohnMcC
registered
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Posted: Mon Nov 24th, 2008 16:44 |
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8 weeks already....wow.
50mg of mino has triggered the strongest reaction so far @ 6 & 36hours. I feel like I have sand in my joints, my palpitations increase with light exposure and fog is nearly always present.
That being said, it seems to be settling and if there is no further downswing in symptoms I'll kick up to 75mg for next week.
I made a long trip last week and on the road back had to deal with some major traffic and the first snowstorm of the year - my stress tolerance is quite low (that alone is stressful) and I was in poor shape when I finally made it home.
The only positive was that I had ramped up the beni to cope (Q2hrs) and it was just enough to prevent a melt-down - I went back to my Q4 hrs after arrival and it took a good 24 hours to feel "normal"
I have tried to go back to an 11pm-6am overnight dose with pain meds ready in the am - it takes until 9 or 10 am to get up to speed - maybe this will smooth out but I can't be too fogged in the am because of the need to work. I do know that the interupted sleep to take a 2am tab was causing me to be very tired and although the IP was more stable - I need the rest too.
The journey continues...
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JohnMcC
registered
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Posted: Tue Nov 25th, 2008 18:01 |
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Since yesterday my cardiac IP has increased dramatically (palpitations, pounding BP 106/64)- the only difference is the 7 hour break at night (that I can tell)
started to include sublingual 20 in between regular doses until this subsides - going back to Q4hrs overnight as well.
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JohnMcC
registered
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Posted: Sun Nov 30th, 2008 05:49 |
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Week 9m begins....as does 75mg mino.
A full 4 days of fairly heavy palpitations last week - Tuesday was kinda scary and I almost called my MP doc...however I upped the beni and after 12 -18 hours or so things went back to more of a tolerable level
Since then things have been ok and I will push on - I have a feeling that the 4 days was a response to a fairly stressful week before and should not put me off.
I've got a conference call with my MP docs nurse this week to see if I can get the routine for phase 2 - so I can order the meds with my next beni shipment and plan to start phase 2 just after Christmas...hopefully this level or 100mg won't kick me too hard......ya right!!!!
weird IP - I remembered from a couple of weeks ago - a couple of days where (despite eating a normal diet) my breath and mouth went foul and after brushing my teeth, the odour from my toothbrush almost made me hurl. I went through two new brushes in as many days then all was fine again. My lips were very tender & cracked and then were fine.....what had I been kissing....
You just can't tell what will die off next....
Last edited on Sun Nov 30th, 2008 05:50 by JohnMcC
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JohnMcC
registered
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Posted: Sun Dec 7th, 2008 23:11 |
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Ten weeks.....
Landmark week - I managed to get into work every day and even managed a late day on Friday. I've worked from home for the last 9 weeks as I was nervous about light exposure. My boss has been great and I have a cozy cave like room to work out of .
IP has been relentless but bearable, I needed a couple hours nap every night after to recover, but this will hopefully reduce. Cardiac IP has also been prominent, BP hovering around 100/50.
One weird IP (I think) - I have areas on my ears that form crusty scabs (eeeewwww!) they hang around for a few days and then disappear - when I remove the scab the skin is raw and very sensitive. Mostly behind the ear lobe & outer rim - totally gross. Hope these die away soon. Once the scab falls off the skin underneath is fine.
I will be getting my D's done next week so my Doc has a baseline before starting phase 2 next month. Results take about 3 -4 weeks to get to me so the timing should be just about right.
I will start 100mg mino next week and stay on at that level until my Doc gives the go ahead for phase 2 - presuming I don't hit a brick wall with IP@100mg.
I've ordered the phase 2 abx and my next beni/mino script from Yetvart (his staff are really great) - they called twice to go over my script request as I'd changed my mino's from 25mgs to 100's and I'd forgotten to include 20mg beni's for emergencies (part of my script) The 20's have been a life saver as a sublingual especially for the cardiac IP - a week last tuesday there was 12-16 hours where I thought I was having a MI or something, but stayed calm had a 20 SL inbetween @4hr doses. It passed.
I cannot get to a Q6hr regimen for beni - I basically shut down with brain fog and the flu like symptoms are too much and when I tried to get a full nights sleep by dosing at 11-6 I woukd be in poor condition until I had taken my 10am dose. So I'm back to @4hrs round the clock. Maybe this will change on phase 2.
Still blows my mind that I've been reading about the MP for 4 years or more and now I am actually participating in a truly ground-breaking treatment and am one of a few thousand to have went down this road so far. When it becomes the standard - it will be nice to be a has-been....
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JohnMcC
registered
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Posted: Thu Dec 18th, 2008 18:02 |
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Almost 12 weeks ...
Started 100mg Mino last week and it completely kicked my.....caught me by surprise for the first few days. A different intensity to the previous dose changes but still tolerable.
I will now be in a holding pattern until my new D's come in and I get the go ahead to start phase 2 - maybe experiment with a different frequency or two.
I didn't have any presumptions about coming through this more quickly or slowly - but I know that I could not have stepped forward any quicker. I cannot cope with Q6 hrs so maybe that could be a sign to slow down but I have found nearly all of my IP to be tolerable with the Q4hrs beni and instead of of dread, I welcome the reaction.....
If all goes well I will report back in the New Year ready for duty in phase 2
Best wishes and Health to all
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JohnMcC
registered
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Posted: Sat Dec 20th, 2008 13:33 |
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Just read this post by Ruth from Nanaimo BC
"Here is some info for Canadians:
Olmesartan has been approved for use in Canada (finally). Schering-Plough received a NOC (Notice of Compliance) for it on Oct. 28, 2008. It will be called Olmetec and the DIN (drug identification number) for the 40 mg tablet is 02318679. It is not yet listed in the DPD (drug product database) which, I think, means that Schering-Plough has not yet notified Health Canada of its intention to market the drug. Nevertheless, the NOC should provide a basis for protest for those of us who have had insurance coverage for olmesartan denied on the basis that the drug was not approved for use in Canada.
Ruth"
What a Christmas pressie!!!!! 
Last edited on Sat Dec 20th, 2008 13:33 by JohnMcC
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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expate
Member
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Posted: Sat Dec 20th, 2008 15:37 |
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Hooray for all you guys up in Canada!!!
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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JohnMcC
registered
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Posted: Tue Jan 20th, 2009 18:02 |
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4 months already...
Latest D results are
25D - 10.8
1-25D 27.5
So after waiting 7 weeks for these results I can get into phase 2.....
Just have to resolve with my MP Doc whether to get the correct ABX or start on the modified phase 2 as he has recommended (I can't understand why...... )
However, I'm pleased with the D's and I can move on....a more detailed report for the last month to follow.
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JohnMcC
registered
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Posted: Wed Jan 21st, 2009 00:28 |
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Well, an interesting month. I started on 100mg mino and after a couple of weeks, my usual flu-like, muscle/joint ache faded to almost zero. I had a really hefty IP kick in the rear starting New Years Eve around 9pm and it lasted for around 24 hours (I think I may have eaten something that I didn't realize.....)
My Sarc cough is back with a vengeance for th first time in a decade, tight chest wheezing, the usual....it's all good....I am hoping that the focus of the IP has moved from cardiac to my lungs as the constant palpitations & pounding have been tiring.
After the usual IP died away it felt like a real holiday and I began to realise just how much IP was around for the last few months, with little brain fog, constant palps and flu symtoms.
I also dropped back to Q6hrs with the beni (a few days to adjust and IP died away), tried varing 48/72 hours for the mino and no noticible changes....
That will be the most stable that I have been @6hrs and it feels good - I now have a lot more leeway to up the beni when IP starts up again.
Really happy with my D tests Diet has been easier than expected, I have not been a zealot with the low carb, I've enjoyed the occasional coffee, an occasional hot choccy...mmmm and generally not stressed over it. I have been very strict with food labels and what is in food that I do not prepare myself - I really have taken to fresh wholewheat bread & WW pasta as a treat and so on. I have also lost 18lbs without trying...... woohoo
Blood pressure has reached a lifetime low 95/50 - my organs are thrilled..
Phase 2 starts on thursday 22nd Jan looks like modified for a little while.....the journey continues.
I would appreciate being able to access the phase 2 alumni forums to help guide me through the next steps
Last edited on Wed Jan 21st, 2009 00:30 by JohnMcC
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JohnMcC
registered
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Posted: Mon Feb 9th, 2009 14:26 |
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week 20
Phase II (modified) meds
Interesting twist on the Phase I progress when getting to grips with phase II. The reactions seem "deeper" and have shifted slightly because of the nature of the abx combo. Much more neuro IP and highs/lows.
On one hand I rejoice that by the time I reach 60 (all things being equal) I will have put aside most of the aging illnesses thanks to a healthy & vigorous innate immune system - an undiscovered country for me.
On the other it is really hard to keep focus on the now and what must be done to achieve that - these bugs really mess with your head.....
Sarc cough is now fully annoying again and unproductive, palpitations come & go
The main problem with the neuro IP is that it sneaks up on you - I will need to think twice - speak once (or not at all) .....it will save on apologies
ramping the meds, having to increase beni during office hours is a fine balance, but should allow me to keep working/productive. The real challenge will be next month when the project that I'm working on starts gearing up again for the year - having to be nice when I am on the road again....
One wierd thing, I work in dark room with a 25W lamp so all is ok light wise. However if I feel that the computer screen starts to feel a little bright (despite being dimmed) I put on my 10% NoIR's and within minutes I cannot stay awake. I literally drop off for up to 2 hours. May be that my light sensitivity has stepped up again....
Last edited on Mon Feb 9th, 2009 14:27 by JohnMcC
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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Deb Grabetz
Support Team
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Posted: Mon Feb 9th, 2009 21:11 |
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Heh John,
Good reading info! Yes, I find this myself that at certain levels I will zip along and then wham a certain dose will take me down a bit more. There is certainly a lot of trial and error and getting used to and "expecting what to expect"! For the most part after my many months on the MP, I have learned to be prepared but still get caught with my sunglasses off at times...(hahah, I thought that was much more appropriate than with "my pants down"...oops did I say that?)
You're doing great...! Deb
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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JohnMcC
registered
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Posted: Mon Feb 9th, 2009 23:54 |
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Deb Grabetz wrote: (hahah, I thought that was much more appropriate than with "my pants down"...oops did I say that?)
Hi Deb
Hopefully I will bypass those bugs/IP..
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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JohnMcC
registered
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Posted: Sun Feb 22nd, 2009 16:33 |
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week 22
148 days
Still on Modified phase II meds
Requiring to up the beni to Q4hrs during daytime because of mood swings, tiredness and general poor attitude.
Very grumpy at times and having some issues getting sleep - when I do drift off my brain works overtime on depressing and unhappy themes. Like walking in a thunderstorm - everything is dark & dull. Tendency to be stuck in a loop with the themes as well. When I roll over to get my 6am beni, I feel exhausted, drained and pretty blue.
I do get some relief once the Q4hrs starts (around 11am) and waxes & wanes over the day. When I get home at night - i usually don't feel very social but make an effort.
So far no recognizable cycle/pattern with the ramping - only positive is that I don't require as many pain meds.
I have had my wife telling me to take an extra 20mg beni and I now take without arguing....
Bronchitis has been & gone (sarc cough still there)
Palpitations in full swing
I'm look forward to getting back to some physical IP - this neuro stuff is for the birds....
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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Dody
Support Team
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Posted: Mon Feb 23rd, 2009 02:46 |
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John,
I was on Mod. Ph2 for almost a year... then Reg. Ph2 for almost another year... I've finally started Ph3. I don't want to discourage you about the for-the-birds neuro stuff, and hopefully you'll be through it and leave it behind you, unlike myself.
But I just realized yesterday that once I started neuro IPs on Clindy, I continued them big-time right through my year of no-Clindy. The good news, though, is that I've become a bit clearer-headed since adding Clindy to Zith in Ph3. Go figure.
I like John McDonald's theory that the neuro IPs are what we are doing IN PLACE OF waiting to be hit hard with various dementias later in life. So what is a little moodiness/stupidity/foolishness/clumsiness now, if it allows us not to be laid flat-out by neuro stuff later on? 
Anyway, my best to you, Dody
____________________
Lyme Arrhythmia Vertigo Meningitis Bipolar lithium tylenol cover up outside mod low lux inside ModPh2Jul07 Ph2Apr08 Ph3Feb09 D25 Oct09 7 Mar10 4
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JohnMcC
registered
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Posted: Mon Feb 23rd, 2009 12:44 |
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Thanks Dody
I know it is a path that has to be traveled - I'm just more of a physical mindset.
Having been a competitor at heavy sports for years (no pain - no gain - no brain) I seem to accept physical discomfort more readily than the neuro side...however the neuro side is the most frightening symptom of my lifelong illness.
Not discouraged by your suggestion - slow & steady wins with the MP and the bugs all have to die, its just a matter of which phase.
Having my brain/mind/personality back will be wonderful...my wife & pups agree
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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Deb Grabetz
Support Team
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Posted: Mon Feb 23rd, 2009 23:36 |
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John, I so agree with Dody. After almost two years on the MP myself, still in Phase II, it's great to be able to do something as simple as read a book again. I basically was unable to read more than two pages without becoming completely fatigued. In fact I had no idea why it was even happening, I was just unable to process. The neuro can be a fascinating aspect of this recovery if we are able to grasp it as a healing process!
Take care! Deb
p.s. Right now I'm reading about FDR and Eleanor Roosevelt...
No Ordinary Time by Doris Kearns Goodwin...
Excellent book which delves into more of the private lives of the two during his years in office!
____________________
Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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JohnMcC
registered
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Posted: Thu Feb 26th, 2009 15:23 |
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MP Day 151
I finally hit the wall at my current dose on mod Phase II.
I've had to ramp beni up to Q2hrs during the day (work) or I simply can't function or be productive. I have a couple of folks looking in on me - I get the feeling that they would prefer me to be out of the office when I'm a little off....just body language and instinct (or paranoia....) on my part. But the phrase Health & Safety has been brought up - by an antagonistic staff member....we shall see how this pans out
The insomnia is taking it's toll, arthritic pain in two of my fingers has increased to a disabling level (loss of motion & swelling), restless legs are intrusive, body temp swings..moods...................... Concentration levels are very poor, memory likewise.
this is worse than the side effects of a prednisone dose change - without the dangerous physical damage....
I will remain at this level of phase II meds until I get some resolution/relief, palliate with beni as required. I am on the 5th dose at this level so I am hopeful that this will calm down within a week or so. If not I will drop back.
I wonder if I will end up like Winston Smith........a clean, perfect mind (no TH1 bugs interfering).......just have to negotiate my way through Room 101 first.....
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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Barney
Support Team
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Posted: Mon Mar 2nd, 2009 01:04 |
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John,
So sorry you are having such a hard time at work with the IP's....but it sounds like you are handling it quite well with the extra Benicar.
Staying at your present dose until IP's slow or stop is a good plan, IMO.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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JohnMcC
registered
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Posted: Wed Mar 11th, 2009 23:37 |
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Day 164 on MP
I have maintained the current level of modified phase II meds and have been stable at @4hrs beni.
I almost feel "human" for the moment - I 'll stay here for a while.
Only major issue is insomnia and I'm trying melatonin as a 1st step in getting to sleep. Very tired but mind is too active to sleep and this leads to crashes during the day.
Big ramp up in work next week so I wont be changing any doses until I get everything organised and can prepare for what may crop up IP wise.
The neuro IP is a very difficult challenge to overcome - especially when the subject is the last to know that something is amiss (onlookers get to have the fun) and can present difficulties in perception, depression, rage, despair, mega fog, drooling....
More than a few times my wife has either appeared in front of me with a beni 20mg capsule or talked me through by phone into taking an extra dose to get me to a better place...
6 weeks on this phase and I'm mid point with dosing and in no hurry to encourage too much IP by jumping ahead.......drooling is not cool....
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
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Knochen
Member
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 380 |
| Status: |
Offline
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Posted: Thu Mar 12th, 2009 13:28 |
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Just FYI -
http://www.marshallprotocol.com/view_topic.php?id=1078&forum_id=32&jump_to=91834#p91834
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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