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Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 54 |
| Status: |
Offline
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Posted: Sun Aug 31st, 2008 23:31 |
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MP Medicine: Benicar Q 6 Minocin 100 mg
Non-MP Medicine: Elavil, vicodin as needed
Light exposure. Varied. Route to work. Florescents in meeting rooms. Some days I've had several hours of light exposure to florescents. Limited to natural light. Just short trips in the car.
Symptoms:
Cold symptoms, chest congestion - 7
Joint Pain: managed - 1
Mid back - 1
wrists - 2
knees - 1
elbows - 0
ribs / pleural lining? - 3
Comments:
IP has been controlled well on 100 mg of minocin. However, chest congestion IP continues. I cough up a lot of clear phlegm. I'm reluctant to do a lot of experimenting with this particular IP so present.
Since I called my MP doctor for his email to put on the phase I questionnaire he has signed up for the physicians forum on the MP site. Please make this change on my questionnaire as this status has changed since I submitted it.
Plan: Once chest IP settles down more: Use Minocin pelletized with dosing minocin closer together. Now that I know Minocycline has a bigger punch than minocin, I will also experiment with minocycline at 1/2 capsule, 3/4 capsule (100 mg capsules).
I have a 3 month followup appointment with my doctor in two weeks to discuss MP progress, blood tests, and progression to phase II.
Questions:
Have you received my phase I questionnaire?
How will I receive assistance regarding moving to phase II or phase II modified?
Overall, my progress on MP in this first phase has been the life-preserver I needed. I'm so grateful to the people who helped me find, understand, and implement MP. I have my life back and know the MP will only continue to restore my health. THANK YOU!!!!!!!
I send many well wishes for great success to our research team in Portugal!!!
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RA 125D30 D25=16 Elavil Vicodin low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9
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natalie17
Advocate
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Posted: Mon Sep 1st, 2008 10:58 |
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Hi Michele,
Your phase 2 questionnaire has been received.
The reply to your questionnaire will advise whether it's recommended to move to phase 2 or modified phase 2 to discuss with your Doctor.
I also suggest keeping up to date with the MP ANNOUNCEMENTS AND NEWS.
Take care.
____________________
CFS/ME| Inderal Clonazepam OC Protein Powder Calcium| Sept06 1,25D=75 Dec08 25D<4.4| avoid light D, NoIRs, always indoors| Ph2-Feb08 | ABCofMP
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Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 54 |
| Status: |
Offline
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Posted: Tue Nov 18th, 2008 06:28 |
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MP MEDICINE: Benicar Q6 Phase 2 meds
NON-MP MEDICINE Elavil, vicodin prn
LIGHT EXPOSURE: Route to work. Saturday / Sunday errands. Full cover and NoIR protection.
SYMPTOMS:
Heart: no arrhythmia
Need for sleep; 3 (decreasing!)
Residual neck acne; 2
Salivary duct cysts. resolved
mild sore throat:
mild teeth pain: 1
depression
nausea
joint pain: knees 4
NEW:
some swollen places on my scalp that became the focal points of a migraine that starts in the scalp and hurts to brush your hair. The migraine lasted days 2-5, the sore places are still there. Upon inspection from my hairdresser, she said she didn't see anything more than a pink spot on my head.
Migraine: 9
COMMENTS: While the migraine and scalp pain were not fun, they held their own comfort in knowing that it was IP. Kill the buggers! I will be travelling tomorrow all day and then two days later attending a convention for 3 days and will keep meds at this level until I can afford the discomfort potential from ramping Mino. I recall my dad removing very swollen ticks from my head as a kid.
PLAN: Stay at same Level. Increase Benicar prn for extra light exposure due to travel and convention. (I dread the potential for florescent lights.)
CELEBRATORY MOMENTS! With MP, there are so many, but this is landmark. Today at work I had a very solid day of continuous activity. So much so I ended up not having time to go home to get lunch. For the first time in a year, I very RAPIDLY walked to an on-campus eating establishment to grab a quick lunch to take back to my office. Pretty different from pre-MP when I was barely making it from the back of my house to the front to teach students in my kitchen. I shared this with one of my students who knew how sick I was last year when she caught me eating my lunch in my office. She loved my "happy dance."  And after a busy full day at work, I still am coasting around at home like I was never sick. On, on, on MP!!!
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MP MEDICINE: Benicar Q6 Phase 2 meds
NON-MP MEDICINE Elavil, vicodin prn
LIGHT EXPOSURE: Excessive. Tuesday: Trip in car for business all day in florescent light setting. Thursday-Saturday: business travel to all day lit convention. Used vicodin prn and added Benicar as necessary.
SYMPTOMS:
Heart: no arrhythmia
Need for sleep; Needed more. Didn't get it. Not the fault of MP
Residual neck acne; 1
Salivary duct cysts. 1 cyst
mild sore throat: 1
mild teeth pain: 1
muscle pain: 4
nausea
joint pain: knees 5, hips 4, wrists 3
swollen locations on scalp: 4
COMMENTS: This was the dreaded work week with many expected and unexpected activities. They were all wonderful activities and I am extremely gratified to having been able to do them! I was pretty rough around the edges on Friday, but rallied after sleeping very well on Saturday night. This new round of zith is continuing to include sore places on my head. Tolerably this time.
Work: Pre-MPers often wonder if they will be able to continue to work while on MP. I was certainly in that place not so long ago. It is working for me. I could not attend this convention a year ago and was back again this year. People are either direct about wearing the NoIRs or just ignore them. I take the NoIRs off for really important business contacts, but left them on for social contacts. The social contacts would joke about them, so I'd either offer my autograph or assure the person I didn't have pink eye.  I wouldn't be working if it wasn't for the MP.
I have so many things to add to my Thanksgiving list and that includes Trevor Marshall and his research team! Thank you for all you do!
____________________
RA 125D30 D25=16 Elavil Vicodin low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9
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Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 54 |
| Status: |
Offline
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Posted: Tue Dec 30th, 2008 04:31 |
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MP MEDICINE: Benicar Q6 Phase 2 meds
NON-MP MEDICINE Elavil, 1/2 vicodin prn
LIGHT EXPOSURE: Limited sunlight.
SYMPTOMS:
joint pain: minimal
numbness in left arm and hand (inconsistent now...2-4)
rib cage soreness 0
congestion in lung 2
viral cold: 8
COMMENTS: I have a full blown cold. Will increase fluids, use vaporizer, and OTC palliatives such as Robitussen. I think this cycle would have been the first cycle my disease symptoms would have been indicating it would be ok to increase zith and drop mino. I will wait until the cold resolves before ramping. It gives me some nice time to enjoy the reprieve from joint pain.
RECOVERY JOY: I attended a Christmas Debutante Ball and was able to dance...with out having any pain! This would never have happened a year ago. I was housebound. Hurray for MP!!!! On on on...
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RA 125D30 D25=16 Elavil Vicodin low lux home NoIRS cover up Ph1May08 Ph2Sept. 21'08 D25=9
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BARNEY
Member in Phase 3
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Posted: Thu Jan 1st, 2009 04:17 |
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Michele,
Glad to hear you have improved and were able to dance...what a treat!
Here's to a Happy and Healthier New Year!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed.
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