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MH2680
Health Professional
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Posted: Wed Mar 26th, 2008 02:31 |
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MPmeds:benicar 40mg q6h
Non MP-meds:milk thistle qd.
Natural light exposure:very limted,homebound,noirs,low lux home,coverup.
Symptoms:headaches after 1hr outing 3days ago-tolerable.
Comments:stopped taking mushroom on 3/10/08.Started mino today.
Thanks Bev.
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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Foundation Staff
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Posted: Wed Mar 26th, 2008 08:19 |
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Hi Bev,
Welcome to our study site for the Marshall Protocol (MP). We're glad you posted.
Please read this Important background information.
Let us know if you agree with the Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol.
Thanks for letting us know you are doing okay on Benicar and have started minocycline. It's a good idea to get in the habit of charting your symptoms.
Please go over items on this checklist. Be sure to inform study site Staff of all medications and supplements (both Rx and OTC) you are taking.
You have a lot of hormonal adjusting going on right now as the Benicar blockade dramatically reduces 1,25-D. It's important to avoid natural light exposure and bright light falling on the eyes by eliminating all avoidable daylight outings, wearing NoIRs, lowering artificial home lighting to 30 Lux and covering up well when you do have to go out. See Why does exposure to natural light increase symptoms? and What precautions should I take when I must go out?
During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc. Follow the Phase One Guideline carefully (print it out so you can refer to it often).
Any symptom that correlates with MP therapy is probably due to immunopathology. This can be controlled by careful management of MP medications and palliative meds as needed.
Please use this standard reporting format for your weekly progress reports.
MP meds:
Palliative non-MP meds used this week:
Light exposure:
Symptoms:
Comments:
Plan:
Questions:
We look forward to following your progress on the MP. 
Best, Meg
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MH2680
Health Professional
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Posted: Mon Mar 31st, 2008 07:12 |
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HI Meg,
Thank you for the help to post.I agree with the ARF phase 11 guidelines.
MP meds:benicar 40mg q6h started 3/11/08,minocycline 25mg qod started 3/25/08
Non-MP meds:milk thistle qd.
Symptoms:metallic taste.Headache-3 after errand on 3/26.Muscle pain-5 after outing today.I used sunscreen,but I guess I did not cover up enough.Noirs 2%.
Plan:Will start mino 50mg on wed,( ie after 4doses of 25mg ).
Thanks Bev.
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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Foundation Staff
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Posted: Mon Mar 31st, 2008 07:53 |
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Bev, thanks for letting us know you are doing okay on 25mg mino every other day. Here are more specific posting instructions:
-Report Benicar and antibiotics in mg with schedules for each, indicate recent changes
-List your daily non-MP meds in your signature line.
-Report the palliative non-MP meds you've taken for the week and the number of times you needed them.
-List routine measures to avoid light exposure (NoIRs, low lux home, homebound, limited outings covered up, lite exp. r/t work, etc) in your signature line.
-Report the amount of natural light exposure for the week. (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs at a picnic on Friday or housebound all week in low lux home)
-Report key symptoms only in a list and rate them on a scale of 1-10 (1 meaning 'barely noticeable' and 10 meaning 'severe'). Indicate which, if any, are intolerable for you.
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 (sun 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.
If increasing Benicar does not reduce intolerable symptoms enough, you may need to adjust mino. Chose 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
Let us know how it goes........
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MH2680
Health Professional
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Posted: Tue Apr 8th, 2008 07:53 |
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MP meds:benicar 40mg q6h(6am,12pm, 6pm,12am).Started 3/11/08
Mino 50mg q48h @ 9am,started 4/2/08.third dose Sunday
.Palliative meds:norvasc 10mg qd x 4days.
Natural light exposure:Monday 2hrs outing,Tuesday 45mins to store.
Symptoms:Monday-fatigue 1
Tuesday-headache 2,joint pain 4
Wednesday-fatigue 6
Comments:Stopped taking norvasc when I started MP.Restarted on 4/3/08-BP170/102. Today bp135/88. Started mino 50mg on 4/2/08 @ 9am,One hr later I was fatigue-took benicar 40mg q4h and this helped.NO symptons other 2 doses.
Question O you think I am having enough Herx reaction?
Plan:will take 4th dose of mino 50mg today.
Bev.
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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Jeannine
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Posted: Tue Apr 8th, 2008 16:02 |
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Hi Bev.
If symptoms are tolerable it would be within the guidelines to ramp ..However your reporting a fatigue rating of 6 would indicate immunopathology...the question you have to ask yourself is..is it tolerable? Please see the two links in blue below.
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.
Hope this helps, Jeannine
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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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MH2680
Health Professional
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Posted: Mon Apr 14th, 2008 06:23 |
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MP meds:Benicar 40mg q6h,(6-12-6-12).
Mino 75mg q48h,started 4/10/08-2nd dose yesterday.
Palliative meds:none
Natural light exposure:2h to doctor on Thursday.30mins errand on Friday.
Symptoms:toothache-1
muscle pain right thigh-2.
Joint pain-2.
Comments:Not much sympyoms this week.Saw MP doctor did not get D-test results.
Best Regards,
Bev.
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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Jeannine
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Posted: Mon Apr 14th, 2008 12:17 |
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Hi MH,
Thanks for posting.
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.
Let us know how it goes...........Jeannine
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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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MH2680
Health Professional
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Posted: Wed Apr 23rd, 2008 09:56 |
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MP meds:benicar 40mg q6h(6-12-6-12).
mino 100mg q72h,started 4/19, 2nd dose yesterday.
palliative meds:none
Natural light exposure: 11/2h to ortho Dr on Monday.
Symptoms:neck pain-2
Joint pain-3
muscle pain-2
fatigue-1
Comments:Experimenting with mino dosage.100mg q72h-joint pain increase after 48h,but tolerable.
Plan:will continue with mino q72h.
Question:MP Dr wants me to do liver ultra sound.Did 2 before,last one 6/06. I did liver biopsy 4/04,this showed sarc.Do you think this Us is necessary?
Thanks Bev.
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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Jeannine
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Posted: Wed Apr 23rd, 2008 16:42 |
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Hi MH,
Doing an ultrasound is not invasive nor does it exposure you to radiation so it would be ok. It is always good to ask questions of why a procedure is being done.
Based on your report, it looks like you should be thinking about progressing to phase two. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire. Before you proceed to phase two, ask your doctor about the tests you need to monitor your progress on the MP.
Before you commence the next phase, please post in the Phases Two and Three forum so we can discuss the details of your next antibiotic.
You can send your filled out questionnaire to me here at the site via private message.
Take care, Jeannine
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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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MH2680
Health Professional
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Posted: Tue Apr 29th, 2008 06:50 |
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MP meds:benicar 40mg q6h(6-12-6-12).
mino 100mg q72h started 4/19, 4th today.
Palliative meds:none
Natural light exposure:30 mins errand on sunday.
Symptoms:fatigue 2
Itching skin and scalp 3-tolerable
back pain 2
joint pain 2
neck pain 1
muscle pain 2
Comments:continue to experiment with mino dosage.
Plan:will try mino 50mg q12h starting on wed.
Best regards
Bev.
noted.
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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MH2680
Health Professional
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Posted: Wed May 7th, 2008 04:28 |
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MP meds:benicar 40mg q6h(6-12-6-12). Mino 100mg q48h
Palliative meds:none
Natural light exposure:21/2h to MP doc yesterday.
Symptoms:Itching skin 1
Joint pain 2
Neck pain 1
Muscle pain 2
Comments:Saw MP doc yesterday, suggest I start on phase 2.Don't know if I am ready,want to stay on mino a little longer.What do you think?I did questionnaire.Got lab results-intial 25D 23(3/10/08),done by labcorp.Did 1,25D and 25D by quest yest.Other abnormal lab results done 4/10/08 wbc 2.8(ref4-10.5). ANC 1.2(ref1.8-7.8). Alk phos 356(25-150). Ast 51(ref0-40).
Best regards
Bev.
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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Foundation Staff
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Posted: Wed May 7th, 2008 16:23 |
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Based on your report, it looks like you should progress to phase two. Before you commence the next phase, please post in the Phases Two and Three forum so we can discuss the details of your next antibiotic.
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MH2680
Health Professional
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Posted: Tue May 13th, 2008 08:04 |
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HI Meg,
I hae been trying to post in phase 2, but is unable to do so.Please inform me what I am doing wrong.
Thanks Bev
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Tue May 13th, 2008 09:13 |
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Bev, Did you open the Phase 2/3 forum, and try to begin a >> "new topic" there? thanks, Barb ..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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MH2680
Health Professional
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Posted: Sun Dec 7th, 2008 02:33 |
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Phase 2
MP MEDS: Benicar 40mg q6h, Phase 2 meds
PALLIATIVE MEDS: None needed
NATURAL LIGHT EXP: 30mins outing mon to fri. 40mins on sun to and from church.
SYMPTOMS: Muscle pain 2
Joint pain 2
Insomnia 1
Back pain 1
Neck pain 1
PLAN: Will start phase 3 next.
COMMENTS: My symptoms have been tolerable throughout phase 1 and 2. My progress has been unremarkable, I am now thinking of returning to work part time. I could not have done this without the MP.
Thank You All.
Bev
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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MH2680
Health Professional
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Posted: Fri Mar 13th, 2009 07:13 |
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Alumni update >>>> 1 yr on MP
MP meds:Benicar 40mg q6h, Phase 3 meds
Palliative meds:none
Natural light exp.:30 mins daily
Symptoms:Joint pain 2
Muscle pain 3
Back pain 1
Headache 2
Comments:All symptoms are tolerable. I am celebrating my 1yr anniversary on the MP. I am now able to ambulate independent(without walker or cane), and have return to work part time.
Thanks to Dr Marshall and his wonderful staff. It was a blessed day when I started on the MP.I will forever be grateful.
Thanks to you all
Bev
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Sarcoidosis 25D23 Ph1 Mar08 Norvasc daily NoIRs low lux home limited outings coverup Ph2 May08 25D<7/1,25D66/ACE56(May08)|1,25D33.6(Aug08)Ph3 Dec08.
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BARNEY
Moderator
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Posted: Fri Mar 13th, 2009 14:24 |
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Bev,
What a wonderful report!! You must be doing it right!!
Keep up the good work!
HANG IN THERE, WE WILL MAKE IT!!!!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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expate
Member in Phase 3
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Posted: Fri Mar 13th, 2009 17:01 |
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Awesome report!
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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