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Chris boy
Member in Phase 2
| Joined: | Wed Aug 22nd, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 31 |
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Posted: Sun Apr 6th, 2008 00:15 |
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Chris boy's test results
chris boy on benicar
Chris' restart date March 13, 2008
mino start date March 30, 2008
Chris' mom posting for her 12 year old son
mp meds: benicar 40mg q6h, mino 25mg QOD
non-mp meds: none
symptoms: stomacheache (1), dental pain (1)
light exposure: almost none, occassionally in stores at night
Chris has responded extremely well to the mino. Meg, you were right about it modulating his immune system, this is the least pain he has had in 4 years, especially in regards to his stomache aches! He has been on the mino for 7 days, is it alright if I increase him to 50mg?
Thanks, Toni
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MP| dx: lyme| hypoglycemia, headaches, fatigue, ibs, dental infections, myalgia, arthralgia, OCD, ADD| avoiding d in foods and sun| aug07 25D=33 1,25D=30|noirs 10%|aug08 25D=15|Phase II 8/20/08|
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
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Posted: Sun Apr 6th, 2008 03:18 |
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Hi Toni, thanks for letting us know Chris is doing well on the Mino 50mg.
If he has only been on Mino 50mg for 7 days may be best to keep him there for two weeks, sometimes takes that long for abx to fully kick in. Let us know how he does and give him our best wishes.
Warm Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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Toni girl
Member in Phase 2
| Joined: | Wed Jun 6th, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 224 |
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Posted: Sun Apr 6th, 2008 05:13 |
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Hi Vez,
He's been on the mino at 25mg, not 50mg, for 7 days. I'm assuming the same goes for 25mg? Anyway, we are all very excited around here in regards to Chris' progress. Thank you all for your neverending selflessness.
Toni
Last edited on Sun Apr 6th, 2008 05:14 by Toni girl
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Lyme CFS, Hashimoto's FM 125D46 MP 07/07 cytomel phenergan valium O2 mg ox 5/08 25D-7 NoIRs limited outings covered Modph1 09/07 Ph1 03/08
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
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Posted: Sun Apr 6th, 2008 13:09 |
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Hi Toni,
You are correct, a couple weeks @ 25mg level and assess sxs. You are doing a nice job juggling it all. Keep up the good work and take care of you too.
Warm Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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Chris boy
Member in Phase 2
| Joined: | Wed Aug 22nd, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 31 |
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Posted: Sun Apr 13th, 2008 20:42 |
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Chris's dad posting for him
mp meds: benicar 40mg q6h, mino 25mg QOD
non-mp meds: none
symptoms: stomacheache (1), dental pain (1)
light exposure: almost none, occassionally in stores at night
Had one bad stomach ache this week, feeling pretty good overall.
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MP| dx: lyme| hypoglycemia, headaches, fatigue, ibs, dental infections, myalgia, arthralgia, OCD, ADD| avoiding d in foods and sun| aug07 25D=33 1,25D=30|noirs 10%|aug08 25D=15|Phase II 8/20/08|
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Mon Apr 14th, 2008 09:13 |
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Based on your report, Chris could increase mino to 50mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the pace of therapy that works 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 the immune response and when to increase as you get more experience in independently adjusting his MP meds.
Let us know how he is 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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Chris boy
Member in Phase 2
| Joined: | Wed Aug 22nd, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 31 |
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Posted: Wed Apr 23rd, 2008 17:12 |
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mp meds: benicar 40mg q6h, mino 50mg QOD
non-mp meds: advil, charcoal, phenergan, beano
light exposure: very little
symptoms: dizziness (5), fatigue (3), sob (1), jaw pain (5) neck pain (3), stomache cramps (9), nausea (7), feeling hot (4), eye pain (2)
Chris lost the blockade for four hours on Monday ( I had fallen asleep and he forgot to take the benicar ). He took the mino and the benicar and seven hours later he developed extreme nausea, sharp pain, and then threw up. I gave him a phenergan and things settled down and he fell asleep. He is doing well now. Should I back down his dosage of mino to 25mg or continue the 50mg dosage?
Thanks, Toni
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MP| dx: lyme| hypoglycemia, headaches, fatigue, ibs, dental infections, myalgia, arthralgia, OCD, ADD| avoiding d in foods and sun| aug07 25D=33 1,25D=30|noirs 10%|aug08 25D=15|Phase II 8/20/08|
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Jeannine R.N.
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| Joined: | Sun Aug 28th, 2005 |
| Location: | Louisiana USA |
| Posts: | 901 |
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Posted: Wed Apr 23rd, 2008 23:15 |
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Hi Chris and Tony,
You can keep with the Mino 50mg if symptoms are tolerable.
What if I forget a dose?
The Benicar blockade is lost if it's been longer than eight hours since your last dose.
If you have forgotten a dose, take 40mg immediately sublingually. See How to make Benicar act faster.
Then take 40mg every four hours for a few doses and work your way back into an effective schedule that works for you, keeping in mind the minimum dosing interval of eight hours.
Staying on schedule with Benicar is important but if you fail, don't panic. The inflammatory blockade will be reestablished in a day or two.
"There is one situation where a higher dose pulse of benicar (40m)may be more effective than a steady dose. When the blockade has been lost, and other molecules have bound into the receptor socket, a higher concentration of the ARB will displace those molecules from the receptor binding sockets, whereas a lower dose background level may not.
This is a theoretical analysis. Just how one applies this to practice is difficult to judge, but, since figuring out exactly how the ARB works, I am being less dogmatic about saying that 20mg every 4 hours is the same as 40mg every 8 hours. It might not be. It all depends on the state of the receptors, and whether blockade has been (temporarily) lost (eg by exposure to sun or forgetting a tablet)."
..Trevor..
HELPFUL HINTS FOR THOSE ON THE MARSHALL PROTOCOL
Log sheet; B/P monitors & technique; the right kind of Benicar; digital timers/ watches/ pillboxes; pill reminder alarms
Take care, Jeannine
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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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Chris boy
Member in Phase 2
| Joined: | Wed Aug 22nd, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 31 |
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Posted: Fri May 2nd, 2008 03:17 |
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mp meds: benicar 40mg q6h, mino 50mg QOD ( 8 doses )
non-mp meds: charcoal once
light exposure: none
symptoms: stomacheache (3), startle reflex (4)
Chris only had one stomachache this week and it was mild. Should I increase the mino to 75mg or should I wait a little longer?
Chris' Mom, Toni
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MP| dx: lyme| hypoglycemia, headaches, fatigue, ibs, dental infections, myalgia, arthralgia, OCD, ADD| avoiding d in foods and sun| aug07 25D=33 1,25D=30|noirs 10%|aug08 25D=15|Phase II 8/20/08|
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Fri May 2nd, 2008 14:31 |
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Since he's taken 8 doses of 50mg mino and symptoms are tolerable, Chris could increase to 75mg. It is important that you become independant in medication management and gain experience by adjusting MP meds using the personal tool kit to manage immune system reactions. This skill will carry you smoothly through the protocol. See What should I do for my stomach problem?
As always, if our information does not provide the answer for you, please ask before you take action.
In phase one at 75mg, 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 his 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...........
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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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Chris boy
Member in Phase 2
| Joined: | Wed Aug 22nd, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 31 |
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Posted: Tue May 20th, 2008 07:31 |
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Chris' mom posting for him
mp meds: benicar 40mg q6h and 20mg inbetweeners, mino 75mg QOD (8 doses)
non mp meds: charcoal, beano, advil
light exposure: minimum, housebound with low lux
symptoms: gi (9), jaw (4),fatigue (7), mood swings (7)
Chris had one of the worst stomach aches the other day that he's had in a year. I'm trying to decide whether to extend his schedule of mino or increase to 100mg. He's having some of the same symptoms that he had prior to mp.
Toni
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MP| dx: lyme| hypoglycemia, headaches, fatigue, ibs, dental infections, myalgia, arthralgia, OCD, ADD| avoiding d in foods and sun| aug07 25D=33 1,25D=30|noirs 10%|aug08 25D=15|Phase II 8/20/08|
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Tue May 20th, 2008 08:47 |
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Did you try an increase in Benicar?
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.
Let us know if you have questions......
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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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Chris boy
Member in Phase 2
| Joined: | Wed Aug 22nd, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 31 |
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Posted: Sun Jun 1st, 2008 04:04 |
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mp meds: benicar 40mg q6h, mino 50mg QOD (6 doses)
non-mp meds: charcoal twice, advil twice
light exposure: minimum in car
symptoms: stomache aches (6), headache (1), toothache (2), depression (6)
I had reduced him to 50mg from 75mg and the stomache aches subsided significantly (Thanks, Meg). He has only had three in the last week and the pain level was 3, and 4, and 6. I am thinking of increasing to 75mg again but I am not sure if it is too soon. Some of his depression might be atrributed to the fact that he cannot participate in any outdoor activities (especially here in Florida) when his friends are out of school soon. His cognitive functioning has improved and he is now making A's in his online math class (he began making D's before I pulled him from school).
Could someone change the title of this thread to, "Chris in Phase One" instead of, "Chris on Benicar", I mistakenly named it incorrectly.
Thanks, Chris' Mom (Toni)
Last edited on Sun Jun 1st, 2008 04:33 by Chris boy
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MP| dx: lyme| hypoglycemia, headaches, fatigue, ibs, dental infections, myalgia, arthralgia, OCD, ADD| avoiding d in foods and sun| aug07 25D=33 1,25D=30|noirs 10%|aug08 25D=15|Phase II 8/20/08|
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sun Jun 1st, 2008 06:28 |
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Toni, you may be right that Chris' depression is a reaction to a lifestyle change. Perhaps you can find some creative ways for him to enjoy activities with friends while avoiding light exposure. These threads might help:
Ideas for social and emotional support
Living life on the MP
Ideas for summer holidays
Recommend waiting to ramp mino until his depression is reduced. You could try an increase in Benicar and/or extending the mino schedule to every 3 days to see if that dampens symptoms.
Chris is a trooper and you're doing a good job..........
____________________
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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Chris boy
Member in Phase 2
| Joined: | Wed Aug 22nd, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 31 |
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Posted: Thu Jun 12th, 2008 06:28 |
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mp meds: benicar 40mg q6h, mino 75mg qod (2 doses)
non-mp meds: charcoal once, advil twice
light: housebound
symptoms: gi pain (6), earlobes red and burning (7), dental (2), headache (1/2)
Chris' depression has subsided since we stayed at 50mg for awhile (thanks, Meg). We'll see how he does again at 75mg.
Toni (Chris' Mom)
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MP| dx: lyme| hypoglycemia, headaches, fatigue, ibs, dental infections, myalgia, arthralgia, OCD, ADD| avoiding d in foods and sun| aug07 25D=33 1,25D=30|noirs 10%|aug08 25D=15|Phase II 8/20/08|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Thu Jun 12th, 2008 06:39 |
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Thank you...
In phase one, it is a good idea to experiment with minocycline and Benicar to see how they work for you. We suggest to extend the mino dosing schedule toward 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........... all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat Jul 26th, 2008 06:24 |
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Toni, our quality assurance team has noticed that you are not posting a weekly report and are wondering if you have been reading FAQs, other progress reports etc, because we notice you are not online very often.
Being a member of our clinical study requires total compliance to ensure Chris' safety and maintain the integrity of the study. Please see Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol.
In order for Chris to remain in the study, you must begin posting weekly or contact us with an explanation.
We want to continue helping Chris but we will need your cooperation........
____________________
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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Chris boy
Member in Phase 2
| Joined: | Wed Aug 22nd, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 31 |
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Posted: Wed Jul 30th, 2008 22:59 |
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mp meds: benicar 40mg q4-6h, mino 75mg qod(2 weeks)
non-mp meds: advil 5 times
light: homebound mostly except for 1 hour
symptoms: nausea (8), headache(4), stomache ache/diarrhea(7), back pain(5), neck pain(4), arm/joint pain(2), watery eyes(3)
Chris had reached 100mgs a couple of weeks ago but symptoms were too much so I reduced him to 75mgs of mino and now symptoms have increased again.
Toni
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MP| dx: lyme| hypoglycemia, headaches, fatigue, ibs, dental infections, myalgia, arthralgia, OCD, ADD| avoiding d in foods and sun| aug07 25D=33 1,25D=30|noirs 10%|aug08 25D=15|Phase II 8/20/08|
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Thu Jul 31st, 2008 05:54 |
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Continuing high level symptoms without a pattern or a change in the quality of symptoms may signal the need for an increase in antibiotic dose. See When to increase antibiotics
It is important not to stay in phase one too long. Bacteria may exist that are resistant to minocycline and they may repopulate tissues cleared of bacteria. Low-dose combinations of MP antibiotics are far more effective at killing CWD than antibiotic monotherapy.
Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire. Please send for it asap so there will be no delay in your progression to phase 2. When you see or call your doctor, be sure to ask about the tests you need to monitor your progress on the MP.
Please 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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Chris boy
Member in Phase 2
| Joined: | Wed Aug 22nd, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 31 |
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Posted: Tue Aug 12th, 2008 10:06 |
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mp meds: benicar 40mg q3-6h, and 20mg s/l, mino 100mg qod
non mp meds: advil 2 times, charcoal once, 1/2 unisom once
light: ten minutes of daylight, one hour flourescent lighting
symptoms: sharp stomach pain (9), tailbone (5), ankle (3), left shoulder joint (3), headache (2), nausea (5)
Checking in,, Toni (Chris' Mom)
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MP| dx: lyme| hypoglycemia, headaches, fatigue, ibs, dental infections, myalgia, arthralgia, OCD, ADD| avoiding d in foods and sun| aug07 25D=33 1,25D=30|noirs 10%|aug08 25D=15|Phase II 8/20/08|
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