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BARNEY
Moderator
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Posted: Tue May 26th, 2009 03:13 |
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Mark,
What a lovely, truly beautiful report of an MPer who is getting a well.
Would you please post the meds you are on/amts? Thank you.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
Last edited on Tue May 26th, 2009 03:14 by BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Markt9452
Member in Phase 3
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Posted: Tue May 26th, 2009 05:12 |
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Thanks Barney
MP meds: Olmesartan 40mg q6h, Minocycline 50mg q48h, Clindymicin 90-100mg q48h, Azithromycin 90--100 mg 10 day cycles.
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Th1 Lyme Symptoms 125D20 D25<10 Ph1Feb08 Ph2Apr08 Ph3Oct08 daily med.exp covered up NoIRs| MyStory|
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BARNEY
Moderator
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Posted: Tue May 26th, 2009 05:22 |
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Thank you Mark.
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Markt9452
Member in Phase 3
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Posted: Fri May 29th, 2009 03:48 |
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Posted: Thu Sep 18th, 2008 06:59 at Curemyth1
I'm not quite ready for vigorous excercise yet - as it causes me to herx - but I do have a goal to be playing ultimate frisbee by next spring - we shall see.
I played Ultimate Frisbee for 2 1/2 hours straight this evening. Got kicked in the head a couple of times. Laid out and landed on my shoulder. Twisted my ankle. I was running around all over the place. I am not injured and my knees are not swollen. Some minor pain in right knee where the meniscus was torn.
I'm not as fast or as strong as I was before but I haven't exactly been excercising either.
I used to get hurt really easy just before I started the MP. It got to the point where I would land on my shoulder and it would make a horrible crunching sound followed by pain that would last for weeks. I figured my bones and joints were deteriorating.
I went way better than I expected.
I'll be in some pain tomorrow without a doubt. You just don't start running around after extended non activity without some pain. But no knee swelling and no crunching or damage is really good.
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Th1 Lyme Symptoms 125D20 D25<10 Ph1Feb08 Ph2Apr08 Ph3Oct08 daily med.exp covered up NoIRs| MyStory|
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expate
Member in Phase 3
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Posted: Fri May 29th, 2009 05:34 |
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Your post makes me sooooo ready to get back into ballet class... yes, it's that brutal.
But, no way I could face myself in the mirrors in a leotard just yet. It's been a year since I've been in class and ten months on the MP and... I've got 15 - 20 pounds extra. I just can't deal with it yet.
And don't tell me my weight is th1. It's just the diet and being a slug. I shall return to having the body I once had.
Thanks for your update, Mark. Looking forward to getting kicked about.
 dette
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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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Markt9452
Member in Phase 3
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Posted: Fri May 29th, 2009 06:04 |
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Thanks dette
With me it was the opposite. I lost muscle mass and went from thin to skinny. I'm about 20 pounds lighter than I would like to be but my bones don't seem to be brittle anymore so now I have something to build on. It's great.
Day 1 of Zith cycle too.
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Th1 Lyme Symptoms 125D20 D25<10 Ph1Feb08 Ph2Apr08 Ph3Oct08 daily med.exp covered up NoIRs| MyStory|
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expate
Member in Phase 3
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Posted: Fri May 29th, 2009 06:19 |
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You rock!
 dette
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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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Shari Gold
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
| Posts: | 26 |
| Status: |
Offline
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Posted: Sat May 30th, 2009 06:39 |
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Hi Mark
Like Odette, your post makes me anxious for my "former" exercise junky life. Me, the avid runner, cyclist, inline skater who misses it so ...
I have gone the way of thin to skinny too. Lost so much muscle mass over the the last 10 months. I used to have a runner's butt .. now it just looks "flat".  I am hoping and praying once through this I will be able to get my body back.
I think I read the previous post of yours a while back where you alluded to wanting to play ultimate frisby around now. So great to hear you have reached your goal. It put a big grin on my face when I read it and it stayed there throughout the day when I would think about your success!
Also ... you are around 6 months ahead of me (also Lyme being one of my prime Th1 culprits) so ... I am thinking I am hopefully going to be sitting in your shoes soon enough. I have really turned a corner in these beginning stages of phase 3 ... the light is at the end of the tunnel somewhat .. and your post just made me even more enthused!
Congrats!!!
Shari
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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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Markt9452
Member in Phase 3
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Posted: Mon Jun 8th, 2009 18:23 |
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Phase III, Day 240
MP 480 days
Thank You everyone for your kind words.
MP meds: Olmesartan 40mg q6h, Minocycline 50mg q48h, Clindymicin 100mg q48h, Azithromycin 100 mg 10 day cycles,
Palliative meds: None
Light exposure: 4 hours per day covered with noirs/bolle, Knochen's sunscreen, leather hats, turbans.
Symptoms: significant only
Total Herx - 3.6/10 - General Systemic IP
Comments: I am doing well. Still improving. Very tired right now sleeping a lot.
Teeth sensitivity appears to be completely gone. I have put on 5 pounds over the last two weeks. I seem to be improving at the same rate as when I was at higher levels of ABX but I have more energy and am less confused. I am doing push ups a few sets of ten per day.
Some muscle twitching, tinnitus always in the evening.
Thank You MP Research Team
Mark
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Th1 Lyme Symptoms 125D20 D25<10 Ph1Feb08 Ph2Apr08 Ph3Oct08 daily med.exp covered up NoIRs| MyStory|
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BARNEY
Moderator
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Posted: Tue Jun 9th, 2009 00:07 |
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Drink plenty of water, xtra salt (sea) (regular salt is mostly chemicals), lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Markt9452
Member in Phase 3
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Posted: Mon Nov 9th, 2009 22:30 |
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Phase III, Day 381
MP 631 days
MP meds: Olmetec 40mg q6h (extra when needed always provides instant relief)
Palliative meds: None
Light exposure: Lots, noirs, gloves, scarf. (no sunscreen=no burn,no redness,no problem)
Symptoms: significant only
Fatigue - 4
Peresthesia - 2.5 (mostly underarms)
Light Sensitive - 3.5
Mastoid/jaw/ear area general weirdness - 2
Muscle spasm/twitching - 1.5 (always at night now)
Lyme rage - 0.2 (cool calm collective and compassionate)
Comments: Protocol still working quite well. Herx is stabilizing now and is starting to be more predictable. Fatigue is the big issue now. More symptomatic at night and when I am horizontal.
Many signs and symptoms from the past are now completely gone. Others are still improving.
I am taking Olmetec almost exclusively now and I think this may provide a more stable predictable neuro-herx pattern than the TR.
Switched to washing hair with a very dilute baking soda/water solution with much success. I am missing much grey hair now. Most of it actually. The beard seems unaffected though.
So far so good. Doc says my thyroid is a bit elevated now which I think is probably about right for the IP I am experiencing.
I can't imagine where I would be now without this. I am very fortunate that I diagnosed these symptoms as sarc and not Lyme (which I ignored because I thought that is only for wing-nuts  ). Of course I am a wing-nut - I just didn't know it.
Plan: Stay the course. Thank my Lucky Stars.
Thank You MP Research Team and Schering Plough Canada.
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Th1 Lyme Symptoms 125D20 D25<10 Ph1Feb08 Ph2Apr08 Ph3Oct08 daily med.exp covered up NoIRs| MyStory|
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 857 |
| Status: |
Offline
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Posted: Tue Nov 10th, 2009 01:49 |
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Yeah Mark! This is such a great report. Keep up the good work!
Claire
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38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Markt9452
Member in Phase 3
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Posted: Mon Feb 8th, 2010 22:09 |
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MP almost two years
MP meds: Olmetec 40mg q6h
Palliative meds: None
Light exposure: Lots
Symptoms: significant only
Brain Fog - 2
Fatigue - 3
Peresthesia - 2 (mostly underarms - always much worse at night horizontally)
Light Sensitive - 2.5
Mastoid/jaw/ear area general weirdness - 2
Muscle spasm/twitching - 1
Lyme rage -1
Aching feet - 2
Night sweats - 1.5
Burning stomach - 2.5
Comments: Doing well. Herx comes on strong as soon as I lay down for sleep.
I have been taking more sublingual doses and it seems to give me a bit more herx this way. Once I get the herx going I go back to normal for a few days.
My family is still not listening.
Many symptoms gone now. Dyslexia, Vertigo, Tinnitus, headaches, passing out (fade to black with crashing computer noises), Palsy, lumps under skin that come and go ...all gone now.
Plan: Stay the course.
Thank You MP Research Team
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Th1 Lyme Symptoms 125D20 D25<10 Ph1Feb08 Ph2Apr08 Ph3Oct08 daily med.exp covered up NoIRs| MyStory|
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