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Scarlett Member in Phase 3
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Posted: Wed Mar 19th, 2008 20:26 |
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Benicar posts
Hello everyone,
This is to let you know I started Minocycline 3/17/08. Would have posted sooner, but had pc problem.
MP MEDS: Benicar 40 mg q6hr; (12 am, 6 am, 12 pm, 6 pm) Started 3/7/08
NON-MP PALLIATIVE MED USE: Ambien .5 mg (3 in last wk)
LIGHT: 40 mins. each day/to and from work
SYMPTOMS: Back-neck muscle pain-4, Irritability-5, Brain fog-2, Chest pain-1,
Skin rash/itch-1 to 3, Sleep disturbance-1 to 3
COMMENTS: After dinner 3/17 and 3/18/08 had stomach cramps (3-tolerable) and mild diarrhea (2-tolerable). Have been following no D diet and no problems until 3/17 (first mino). Back pain seems to be most consistent problem (4-5 tolerable). I use a heating pad on medium when at home, it seems to help. Is this allowed? Read massages, hot bath, etc. may make worse but heating pad seems to assist with problem. Also, sleep disturbance comes from waking @ 12 am to take Beni -- can't get back to sleep alot of time. Am wearing NoIRs and most time they seem to be to much, especially on computer. Have 2% and 10%.
Thanks for your help and your time.
j gregory
____________________ Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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Posted: Wed Mar 19th, 2008 23:41 |
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Thanks for letting us know you have started minocycline. Please review the information threads pinned to the top of this forum so you will be able to independently locate answers to frequently asked questions. See What should I know about Minocycline?
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding natural light and vitamin D, getting adequate rest, pacing activities, eating well, using palliative meds appropriately and managing the immune response by adjusting Benicar and minocycline.
It may take a week or two to feel the effects of each new minocycline dose level. Until you know, it is best to err on the side of caution. Stay at each dose level for 3-4 doses with tolerable symptoms at all times before increasing unless experience tells you that an increase would dampen intolerable symptoms.
An increase in any symptom that correlates with MP therapy is due to immunopathology. These symptoms can be controlled by adjusting MP medications and using palliative meds as needed.
Using a heating pad is okay but take the usual precautions to avoid burning your skin.
You can alter your Benicar schedule to improve sleep and take it just before bed. See Benicar dosage and schedules.
If your NoIRs are too dark for you to see indoors, it's fine to go without or wear a lighter pair (40%). Under artificial light a good pair of UV blocking sunglasses is adequate. See Light avoidance simplified
Let us know how it goes.........
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Scarlett Member in Phase 3
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Posted: Mon Mar 24th, 2008 01:09 |
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Hello Meg,
Thanks for guidance in last post as to NoIRs and Beni schedule, it has helped alot.
MP Meds: Beni 40 mg q6 hrs (6:30 am, 12 pm, 6 pm, 11 pm)
Minocycline 25 mg q 48 hrs (4th dose at 6 pm tonight)
NON MP Meds: Ambien (.5 mg 3 x's this wk)
Light: To/from work, 20 mins. each way, 5 days/ church 10 min. each way, 1 day NoIRs & covered except face
SYMPTOMS: Pain Neck, Shoulder, Back - 3 Dizzy - 2 (upon standing, taking it slow and read "what to do") Fatigue - 3 Irritable - 2 (worse when fatigued)
COMMENTS:BP holding at 92/62 - my MP doctor is giddy over this and very excited about MP. Fatigue has started again, was real problem for last 2-3 yrs. until Vit D. supp. 3/07 and Jan. Feb. '08. Didn't realize was only making immune problem worse in long run until discovered MP.
Trying to cat nap @ work on lunch hour (20 mins) and when first home from work (20-30 mins.) seems to assist alot. Worst problem seems to be pain in neck, back and shoulder (especially is standing for very long or overtired). Had neck injury years ago-read on MP where "bugs" collec tin old injury areas.
Experienced back pain begin 2-3 years ago and sarcoid doc said probably from sarcoid - I remember now that statement really scared me and woke me up as to possible extent damage sarcoid could do.
Notice bra line pain couple times and 1-2 sharp pains in different areas. Hard shoulder socket pain one day for a few hours (tolerable). Hand rash and itch are better, using cetaphile and aveeno anti-itch cream, gloves to do dishes. Noticed numbness in foot one day, didn't think alot about IP until reading and charting. Having a few headaches (intermittent), tolerable as had migraines last 15-20 yrs. Had anywhere from 5 - 20 a month.
Now menopausal (last menses 10-07). 2/28/07 lab results FSH 25.66/LH 16.10. Nothing like menopause and MP at same time.
To ER 1/08 due to chest pain and numbness in lower eyelids - DX potassium level 2.8/rec'd. potassium tablets (4 @ hospital) and retested next day as well as nuc. stress test - results of both ok. Also, rt. heart cath. 9/06 - results ok. Rec'd. PFT results from 12/12/07 "Overall impression normal PFT w/isolated increase in airway rsistance. If pt's. symptons were unexplained recommend methacholine challenge to evaluate for reactive airways disease. When compared to 5/07 study no change in pt's. spirometry lung volume, but was mildly decreased in diffusing lung capacity".
QUESTIONS:MP doc said IP may be slow as Vit D high due to D supplements first of this year. Also, read Mino may take 1-2 weeks to feel effects of each mino dose. Am taking 4th dose of 25 mg. mino @ 6 pm tonight. I am on strict D diet, NoIRs, etc to get D level down. All symptoms tolerable. Should I increase to 50 mg. mino at next 48 hr. dose (3/25) if symptons stay tolerable
white space added between text for clarity. thank you.
____________________ Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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Posted: Mon Mar 24th, 2008 08:05 |
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Thanks for a clear and concise report. Based on your report, you could increase mino to 50mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the pace of therapy that works for you is part of the experience gained throughout the MP journey. Ramping too quickly is not advised but there is no need to tarry. You will gain confidence in your knowledge of the actions of your immune response and when to increase as you get more experience in independently adjusting the MP meds.
Keep up the good work........
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Scarlett Member in Phase 3
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Posted: Mon Mar 31st, 2008 04:40 |
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Hello all:
MP MEDS: Beni 40 mg. q6 hr. 4 am, 10 am, 4 pm, 10 pm Mino 50 mg q 48 hr
NON MP MEDS: Ambien .5 mg. 4 x's this wk.
Light: To/from work 20 mins. each way-5 days, to/from church 10 min. each way 1 day NoIRs and covered except face To sister's 1 day - covered
Symptoms: Pain Neck/Back/Chest 4 Dizzy 2/3 off - on Fatigue 3 Irritable 3 Reflux 3 Rash/Itch 3 Intermittent Headaches 1/2 Braig fog 3/4 All tolerable
Comments: Resting/napping upon arriving home from work. Worst and most consistent sym. this week was neck/back pain. Noticed parasthesia in foot again this week (2 days-10 mins. or so). Have noticed dry eye problem not as bad, probably thanx to NoIRs and low light. Also, doc told me a year or so ago I had beginning of carpal tunnal, have noticed pain (1/2) in hand this past wk.
Question: Took 3rd dose 50 mg. Mino on 3/29. Should I go 75 mg. Mino @ next dose (3/31) as long as sym. remain tolerable or stay @ 50 mg. for 4th dose? Will follow your advise. Am studying Adj. MP Meds/Tool Kit as it seems might be coming up next. Thanks to all of you for your time and energy. God Bless, j
____________________ Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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Posted: Mon Mar 31st, 2008 12:03 |
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Based on your report, you could increase mino to 75mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the pace of therapy that works for you is part of the experience gained throughout the MP journey.
Ramping too quickly is not advised but there is no need to tarry. You will gain confidence in your knowledge of the actions of your immune response and when to increase as you get more experience in independently adjusting the MP meds.
Let us know how you are doing........
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Scarlett Member in Phase 3
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Posted: Wed Apr 2nd, 2008 13:19 |
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Hello again,
Well, I increased to 75 mg. Mino and have a few questions.
MP MEDS: 40 mg. Beni q6 hr., 1st dose 75 mg. Minocycline on 4/1/08
NON MP MEDS: Ambien (.5 mg. on 3/31)
Light: To/from wk. 3/31 20 min. each way, home (low lux) on 4/1, NoIRS for TV or PC
Symptoms:4/1/08 Dizzy-8, Fatigue-9, Back Pain-4, Skin Rash 3/4 (All symptoms tolerable except for dizzy and fatigue)
Comments: Missed work as upon waking was very fatigued as had been in past before Vit D mega doses. Also, as in past felt as if I could not get fully awake and basically laid on couch from 7:30 am until 1:30 pm or so. Then felt like a different person, awake. In my attempt to eat breakfast almost blacked out. Rose slowly but literally clung to dining room chair as everything went black and legs attempted to buckle a few times. Did get breakfast, laid back down and slept. Was alone as husband had already left for work. At 8:30 am did manage to call work and advise not coming in, friend at work called 2 x's thru day to check on me. Then when time to go to bed until able sleep to took Ambien @ 9:30, asleep at 10:00 then awake @ 4 am for Beni dose. Now unable to sleep so am posting. Also, have found upon waking in night parasthesia in arms frequently and unable to go back to sleep some times. Found another doc in area willing to do MP even after he spoke to my pulmonologist and sarc specialist at OSU. Will see if perhaps both docs will work together. Also, have been denied for Beni by Anthem (Blue Cross/Blue Shield), should receive denial in mail this week and will continue to appeal. However, am working w/local pharmacist (my husband's family knows him) and he has said he will sell to me at his cost--$1.95 per pill). Also, 2nd MP doc is going to speak to Beni rep. and gave me samples to help out. These things have stressed me a bit but am trying to let slide off back and go w/flow. Not easy for me but am trying.
Question/Plan: Do I take another 75 mg. dose Mino at 48 hr. or wait for 72 hours? Should I have tried extra Beni for fatigue yesterday as it passed within hours and was able to sleep thru? Any suggestions greatly appreciated.
God bless,
j
____________________ Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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Foundation Staff .

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Posted: Fri Apr 4th, 2008 03:26 |
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If symptoms are approaching intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (natural light exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap.
The recommended first step when symptoms have gone past tolerable is to increase Benicar. Do not wait. Take an extra oral 40mg immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly.
Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster.
If an extra oral or sublingual dose of Benicar does not work, do not assume that increasing Benicar to every four hours will not work.
If intolerable symptom/s persist, increase oral 40mg Benicar to every fours hours around the clock (set an alarm and use a dosette to avoid error). Continue until symptoms are tolerable.
During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation.
If increasing Benicar does not reduce intolerable symptoms enough, you may need to adjust mino. Choose one of these options:
-reduce the dose first (lowest dose is 25mg)
-extend the schedule to every third or fourth day
-take an extra dose of 25mg (or 50mg if used to a higher dose)
-discontinue until symptoms settle
-ramp up by 25mg See When to increase antibiotics
-take low dose, high frequency mino (25mg every 6 hours or 50mg every 12 hours or a daily dose of 25-50mg)
When uncertain what to do when trying to reduce symptoms, it is best to first try reducing the mino dose and/or delaying the next dose before trying an extra dose or frequent mino dosing.
Hang in there.........
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Scarlett Member in Phase 3
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Posted: Tue Apr 8th, 2008 21:35 |
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Hello Meg,
Thanks for your last post. I guess what confused me is I have always slept thru my fatigue and it never occurred to me to adjust meds. After reading more I realized my mistake and was perhaps thinking clearer this time and took extra dose of Benicar when fatigure and dizziness was approaching intolerable.
MP MEDS: 40 mg. Beni q 6 hr., 4th dose 75 mg. Mino on 4/7/08
NON MP MEDS: Ambien 5 mg. 4 x's this week and 2 Benadryl (children strength) 2 x's this week (found no hangover effect with this dosage)
Light: To/from work 20 min. each way-5 days to/from church 10 min. each way-1 day NoIRS, covered except face
Symptoms: Chills-2, Dizzy 2-4 (8 one day), Reflux-3, Fatigue-2 to 7, Intermittent Headache 2-4, Pain Neck 2-4, Chest 2-4, Shoulder 2-4, Back 2-4, Paresthesia 2-3, Pruritus 2-3, Skin rash 2-3, Sleep Distrubance 3-4 All Tolerable
Comments: Extended 75 mg. dose Beni to 72 hours on 4/7, no signifigant problems - one a.m. very fatigued and dizzy, took extra Beni and resolved problem (also slept in 2 hours). Plan to up Mino dose to 100 mg. on 4/9 if no problems prior and your consent. Also, saw GP last week and he wanted me to obtain questionnaire for Phase II. Will do blood work prior as well.
Thanks again for all your help. God bless.
j.
____________________ Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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Scarlett Member in Phase 3
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Posted: Tue Apr 8th, 2008 23:06 |
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JUST A FOLLOW UP TO SAVE YOU SOME TIME FROM MY LAST POST
I HAVE PRINTED OUT "HOW DO I KNOW IF I'M READY FOR PHASE TWO?" AND AM STUDYING IT SO YOU CAN DISREGARD THAT PORTION OF LAST POST.
THANKS ALOT
J
____________________ Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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Scarlett Member in Phase 3
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Posted: Sun Apr 13th, 2008 22:41 |
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MP MEDS: Beni: 40 mg. q 6 hr. Mino: 50 mg. q 12 hr. (4 doses/1 @ 10 am and 10 pm on 4/9 and 4/10) Mino: 75 mg. q 48 hr. begin 4/12/08
NON MP MEDS: Ambien 5 mg. 5 x's this week/Benadryl (children's dose) 3 x's
Light: Covered, NoIRs, 20 mins. each way to/from work 4 days, 45 min. 1 way shopping
Symptoms: Skin rash/itch-4, Dizzy-2/5, Low Energy-2/4, Reflux 1/4-Fatigue-2/7, Back pain-2/4, Photosensitivity-2, Paresthesia-2/3, Sleep Disturbances 5/6 All Tolerable
Comments: In last post was going to try 100 mg. Mino, instead decised to adjust MP meds so I went to 50 mg. Mino q 12 hrs. for 4 doses. All symptoms eased. Have gone back to 5th dose 75 mg. Mino. and symptons have started again. Will stay for 2-3 doses then go to 100 mg. Mino if no signifigant problems. Have appt. w/GP on 4/21 to discuss Phase II, blood test, Rx, etc. Will request questionnaire in next day or so. Will follow above plan unless advised by you otherwise.
Again, thanks for your assistance.
God bless,
j
____________________ Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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VEZ R.N. Health Professional
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Posted: Mon Apr 14th, 2008 01:05 |
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Thanks for checking in J.
In phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce the mino dose to see if that dampens symptoms. You could also try taking lower dose minocycline every six or 12 hours (25mg every 6 hours or 50mg every 12 hours or a daily dose of 25-50mg) to see if this dosing has an anti-flammatory effect for you.
When a symptom approaches intolerable try an extra Benicar, both oral and sublingual. If that is not effective, increase to every four hours around the clock (set an alarm) to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit.
You will gain experience adjusting MP meds to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs.
Sounds like you are managing your sxs and dosages well....Nice job! Keep up the good work and we will be looking for your questionnaire in preparation for the next phase. Continue all supportive care.
Best Regards, VEZ
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Scarlett Member in Phase 3
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Posted: Mon Apr 21st, 2008 19:01 |
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Hi VEZ: Thanks for your comments from 4/13, always appreciated.
Weekly update:
MP MEDS: Beni 40 mg. q 6 hrs. from 4/14 thru 4/17 then q 4 hrs. on 4/18 and 4/19 * Mino 75 mg. on 4/14 and 4/16, Mino 100 mg. on 4/18 and 4/20
NON MP MEDS: Ambien 5 mg. every evening for sleep.
Light:40 mins. a day to/from work-5 days, 10 mins. church-1 day, 1 hr. grocery shopping-1 day. Covered, NoIRs
Symptons: Low energy 2/8, Chills 2, Dizzy 2/6, Refluz 3/5, Fatigue 2/8, Irritability 2/5, Pain Neck 2/4, Chest 2/4, Joints 2/5, Back 2/6, Photosensitivity 2/6, Paresthesia 2/6, Skin Rash-Itch 2/5, Sleep Disturbances 2/5, Depresssion 2/8 All tolerable except for 1 day *
Comments: *On 4/17 I forgot and looked outside w/out NoIRs, was instantly blinded by white light for several minutes. I woke on 4/18 very depressed and fatigued, managed to get to work and hide out in my "cave" and do paperwork all day. Went home and was in bed all evening. Finally, in morning hours on 4/19 I realized what had happened and increased Beni to q 4 hrs., relief was almost immediate. Won't make that mistake again. I mean, I knew better, have read over and over what light does to each of us. My plan is the same, see GP today so I might move on to Phase II and more healing. Have filled out questionnaire.
____________________ Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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Jeannine Board Staff

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Posted: Tue Apr 22nd, 2008 05:44 |
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Hi J,
We all get the reality check at one time or another in regards to light . Extra Benicar works wonders Glad you took the right steps!
If you have sent your questionnarie to Meg please send it to me here at the site.
Thanks, Jeannine
____________________ CFS FM Lyme Morgellon's Depression/Anxiety 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Scarlett Member in Phase 3
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Posted: Wed Oct 14th, 2009 18:03 |
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Hello All:
Day 590 on MP
Update 9/14/09 thru 10/12/09
MP Meds: Beni 40 mg. q 6 hrs. -- No abx since 5/24/09
Non MP Meds: Benadryl Nightly, Aleve (just a few times over the last month)
Light: My exposure has increased due to moving, no covering at windows, etc. Most windows are now covered and much less light. Also, the shorter fall days help.
Symptoms: Asthenia 2, Back Pain 2/6, Chest Pain 2, Cold 6, Constipation 3, Cramps-Legs 3, Depression 2, Dizzy 2/6, Emotional/Crying 4, Fatigue 2, Headache 2, Loss Appetite 3, Nasal Drip 5, Reflux 4, Skin Rach/Itch (Hands) 2/6, Sleep Disturbances 2, Sore Throat 2, Weight Loss 8, Frozen Shoulder 2, Stiff/Achey Joints 2
Comments: Where to start. First of all, I have not posted for a month due to moving. To say the least things have not gone as smoothly as my DH and I had hoped, but we are getting there. Our contractor's wife has been hospitalized (with what I believe is TH 1 inflammation) so he had not completed the renovations to our house by the time we had to be out of our former house. One of the sub-contractors (the cabinet maker) has injured his back. We moved in without kitchen cabinets (no cooking of foods without Vit D--fortunately I had frozen a few MP safe things in advance), no closets and/or closet rods, etc (clothes in floor), hook up for dishwasher off 13", hook up for dryer on the wrong side of washer and to high in wall by about 10 ". No curtains and/or window coverings until this past week. No hot water for a week or so, lost electricity for a day or so as well as food in freezer, new refrigerator quit working. But things are improving.
I tell you all of these things because I am amazed at how well I have handled this situation and I am strongly convinced it is because of the MP . There is no way prior to starting the MP I could have handled even one or two of these events happening to me, much less all of them within a matter of a few weeks.
I stopped all abx 5/24/09 due to a frozen shoulder and am so glad I did. To see the improvements in my health/emotions has been staggering to me and my family. There is no way, absolutely no way I could have handled this move prior to the healing the MP has provided. 
Yes, I still become fatigued, emotional, my back hurts, etc. but after a night of rest I feel so much more refreshed in the morning. And speaking of sleep . . . I have not taken Ambien for two or three weeks. I take a Benadryl most nights and that is all I need. Sleep comes without a Benadryl but I find I sleep fitfully and it also helps with the nasal drip.
Several days over the last month I have been re-visited by some older symptoms such as chest pain but nothing like in the past where I would end up at the ER fearing a heart attack.
Also, I have had alot more light exposure (some with NOirs/some w/o NOirs -- not always handy even with my best efforts). I am hoping my D level has not raised due to not always getting the proper foods and increased light exposure. I hope to retest in a month or so and take greater care until then.
I am not a writer, but wanted to try and convey the success I have had with the MP and express my gratitue for what I believe to be a miracle in my life, the Marshall Protocol. Thank you Dr. Marshall and all the wonderful people associated with this site. May God bless each one of you and the world quickly discover this miracle through your efforts.
Scarlett
____________________ Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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BARNEY Moderator

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Posted: Fri Oct 16th, 2009 03:54 |
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Oh Scarlett,
How I feel for you!! I agree with you about not being able to endure the stress without being on MP. It got me thru also.
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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