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Elizabeth2
Member in Phase 2
| Joined: | Mon Mar 31st, 2008 |
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| Posts: | 18 |
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Posted: Wed Apr 2nd, 2008 00:38 |
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I am 18 years old. My parents and my brother have been tested positive for Th1 disease and are on the MP. I went on a Vit. D deficient diet for 2 wks and then tested Vit D levels on 3/15/2008. Since testing I have been on Benicar 40 mg q 8.
Test results: 25 D 17ng/ml 125 D 65pg/ml (Frozen through Quest Labs)
My diagnoses include chronic intermittent fatique, insomnia, intermittent foggy brain, dyslexia, irritable mood, trichotylomania, general anxiety with mild OCD symptoms, thoracic kyphosis, chronic tension headaches (since 1st grade) and migrane headaches since menses. I was on birthcontrol for frequent menses for 6 months (have been off for 9 months). Menses were associated with foggy thinking and headaches. BCP was associated with weight gain and chest wall pain.
After getting my test results I took 25mg of minocycline last night. I woke up this morning with a sore throat and I have noticed my thinking to be foggy and I have had a headache all day. Since being sick I have increased by Benicar dose to every 6 hours.
I plan to continue on the MP as outlined. My family is helping me with dosing and I plan to report back on a regular basis.
Despite all my problems I am on track to graduate from high school and plan to start college in August.
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CFS dyslexia trichotillomania migraines thoracic kyphosis 125D65 Ph1Mar08 25D25 (August 8) low lux home NoIRs lite exp driving covered up
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Wed Apr 2nd, 2008 10:35 |
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Hi Elizabeth,
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.
Your 1,25-D is elevated at 65pg/ml (the population average is 25-29 pg/ml). It is 3.79 sigma high and based on population studies, 99.99% of the population would be expected to have a lower number.
Your 1,25-D is above the maximum of 45pg/ml listed in the Merck Manual of Diagnosis and Therapy (15 Oct 2006 online). At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts, causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, and the kidneys (where it forms kidney stones). Please see Osteoporosis, osteopenia and Th1 illness.
Your 25-D of 17ng/ml is low for someone who has not long been diligently avoiding ALL Vitamin D in their diet and/or supplements. High levels of 1,25-D inhibit the conversion of vitamin D into 25-D. The low 25-D correlates with your high 1,25-D and is indicative of Th1 inflammation.
Thanks for letting us know you have started Benicar and 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
P.S. Before your next post, please add the required signature line. Thank you.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Elizabeth2
Member in Phase 2
| Joined: | Mon Mar 31st, 2008 |
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| Posts: | 18 |
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Posted: Tue Apr 15th, 2008 03:16 |
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MP Meds benicar 40mg q6, mino have increased to 50mg q48
Non MP meds none
Light exp Wearing Noir glasses and sun screens. Sun exp mostly while driving. Has been minimal
symptoms Intermittent fatigue. HAs are improved
Plan to continue on the same dose of mp meds
Moderator Note:
P.S. please add the required signature line. Thank you.
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CFS dyslexia trichotillomania migraines thoracic kyphosis 125D65 Ph1Mar08 25D25 (August 8) low lux home NoIRs lite exp driving covered up
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Tue Apr 15th, 2008 05:44 |
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Thanks for checking in.
To maximize safety, protocol efficacy and chance of success, we expect all members (even those who think they are doing well independently) to post a brief progress report weekly so Staff can catch any problems early and have details of past responses to be better able to assist you if you need help.
Based on your report, increasing mino to 50mg is the right step. 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.
It may take a week or two to feel the effects of each new minocycline dose level. It is best to err on the side of caution and stay at each dose level for 3-4 doses to make sure symptoms are tolerable. Don't ramp up until you are able to tolerate a symptom increase unless experience tells you that an increase would dampen intolerable symptoms. See When to increase antibiotics
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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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Elizabeth2
Member in Phase 2
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Posted: Tue Apr 29th, 2008 02:02 |
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MP Meds benicar 40mg q 6, minocycline now up to75 mg q 48
non MP meds occaisional use of motrin
Light exp limiting light exp as in last communication
Sympt has been irritable and fatigued. Over the past few days has been feeling better
Pla to increase minocycline if able
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CFS dyslexia trichotillomania migraines thoracic kyphosis 125D65 Ph1Mar08 25D25 (August 8) low lux home NoIRs lite exp driving covered up
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Jeannine R.N.
Board Staff
| Joined: | Sun Aug 28th, 2005 |
| Location: | Louisiana USA |
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Posted: Tue Apr 29th, 2008 05:23 |
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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
P.S. please add the required signature line. Thank you.
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Elizabeth2
Member in Phase 2
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Posted: Sat May 17th, 2008 03:23 |
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MP Meds benicar 40q6, mino 100mg q48
No palliative meds
Light exp i wear sunglasses, sunscreen, low lux light at home, and cover up outside
Symptoms tired, weak, light headed and dizzy at times. also one episode of a sore throat and headache so i increased my benicar which helped.
Comments i hope to move to phase two as soon as possible
Plan 25 D soon.
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CFS dyslexia trichotillomania migraines thoracic kyphosis 125D65 Ph1Mar08 25D25 (August 8) low lux home NoIRs lite exp driving covered up
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat May 17th, 2008 03:31 |
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Elizabeth, as stated earlier, it is a requirement of participation in our clinical study and counseling on this study site to post a brief progress report weekly so Staff can catch any problems early. Failure to comply may result in being dropped from the study because we cannot ensure your safety under these circumstances.
Please rate symptoms on a scale of 1-10 (1 meaning 'barely noticeable' and 10 meaning 'severe').
You took the right action by increasing Benicar to dampen symptoms. If increasing Benicar does not reduce intolerable symptoms enough, you may adjust mino. Try only one of these options at a time. Assess effect before trying another option:
-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.
You have not indicated if you followed Jeannine's instructions to experiment with mino and Benicar dose/schedules. Please reply to moderator's questions and indicate if you followed the instructions.
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.
Keep in touch..........
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Elizabeth2
Member in Phase 2
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Posted: Mon May 19th, 2008 03:45 |
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After taking the meno 25Q6 my symptoms were slightly better.
I was also slightly better when I took meno 100Q72 during the third day post dosage.
I have increased the dosage of benicar to 40Q4 hourly when I have symptoms of headaches. This also seems to kinda of help.
I plan to request the questionaire so I can progress to phase 2.
Noted
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CFS dyslexia trichotillomania migraines thoracic kyphosis 125D65 Ph1Mar08 25D25 (August 8) low lux home NoIRs lite exp driving covered up
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Elizabeth2
Member in Phase 2
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Posted: Sun May 25th, 2008 20:53 |
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MP Meds: Mino 100mgq 48. Benicar 40mgq6. Increased to 40mgq4 for 24 hours when experienced coughing.
Pallative meds: none
Light exposure: Unavoidable driving 30 mins per day using sunscreens and clothing protection. Wear sunglasses when driving.
Symptoms: fatigue (6); foggy brain (5); generalized weakness (5); headaches (4); cough (7) -- improved with increased Benicar to (6)
Comments: I have had labs drawn for 25 D levels. Results not back.
Plan: Waiting to hear from you. Would like to send questionnaire, but waiting on D levels
Questions: Can I send my questionnaire in now or wait for D levels first? I am anxious to start Phase 2 as soon as possible.
Moderator Note: your post has been merged with your progress report. Thank you.
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CFS dyslexia trichotillomania migraines thoracic kyphosis 125D65 Ph1Mar08 25D25 (August 8) low lux home NoIRs lite exp driving covered up
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Mon May 26th, 2008 03:56 |
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Elizabeth, it will take a few days to respond to your questionnaire so please send it in now. The level of 25-D will not delay your progression to phase two.
After you get the reply and 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.
Nice work..........
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Elizabeth2
Member in Phase 2
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Posted: Fri Jun 6th, 2008 00:00 |
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My 25D is back 22 (5/21/08). I have stopped all milk and cheese. Will make every effort to reduce any sun exp. Still waiting for your reply
noted thank you.
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CFS dyslexia trichotillomania migraines thoracic kyphosis 125D65 Ph1Mar08 25D25 (August 8) low lux home NoIRs lite exp driving covered up
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Sat Jun 7th, 2008 07:08 |
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Now that you have access to the Phase 2/3 forum, please read the Information and begin a new Progress Report /post in the Phases Two and Three forum before you proceed to phase two, so we can discuss the details of your next antibiotic. Thank you, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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