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1coyote
Member in Phase 3
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Posted: Wed Jun 13th, 2007 01:50 |
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Start Date = 5/28/2007 MP Phase 1, Benicar only
Benicar 40mg q6h
Start Minocline = 6/10/'07 25mg q48hr
I suppose it's time to move these posts to the Beni + Mino forum... Done!
Well, this is nearing the first 48th hour of Mino 25mg q48h. The only noticeable difference has been a definite uptick (sic!) in energy and endurance. While I certainly could not complain about that, if this were a "therapeutic probe" my reactions thus far may appear to be a dry hole!
Thanks, Janet, for your hints on splitting the 50mg of micro-BBs. This moved my yield from ~50% to maybe 60%! Maybe this could account for my quite humble reaction to the Mino thus far? Just kidding! 
Perhaps more to the point, could my consumption of kefir and fermented cabbage juice have any effect on these miniscule doses of abx? If so, I could either lay off them, or move on to 50mg so as to finally be feeling the pain. Of course the more plausible response would be to stick w/ the plan, as it is too early to project patterns. Right?
1coyote
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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Aussie Barb
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Posted: Wed Jun 13th, 2007 01:58 |
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1coyote
Welcome to Benicar and Mino forum. Thank you for posting..
I note that your 25-D=24ng/ml also and yes anything that may interfere is better steered away from.. see this FAQ for more details
the self assesser - checker FAQ.
Why isn't the Marshall Protocol working? what am I doing wrong?
We recommend staying at each dose level for at least a week.. and the new antibiotic can take 2 weeks to kickin or can kickin at any time..
Extra tips:
Regular posting and reading on the Board have been found to maximise the chance of success..
Downloadable MP Documents These Quick-Scan Tracking Charts may be helpful to you
Having a dosette and reliable alarm system.
Charting may be helpful.
Tools to check:
all best, 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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1coyote
Member in Phase 3
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Posted: Fri Jun 15th, 2007 02:30 |
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Start Date = 5/28/2007 MP Phase 1, Benicar only
Benicar 40mg q6h
Start Minocline = 6/10/'07 25mg q48hr
I have now completed the 2nd cycle of Mino 25mg q48h, and ready now to take my 3rd dose. Felt quite good today, tho yesterday was a bit down. Overall, my response is nothing significantly above background symptoms.
After doing some more reading, I have decided to not make any changes around my diet as yet, but continue for at least a week to assess what the continued buildup of Mino will do.
1coyote
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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Aussie Barb
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Posted: Fri Jun 15th, 2007 03:01 |
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Thank you 1coyote
Just have to make sure you realise that the MP is not based on "continued buildup of Mino"
see the FAQ Why do we take minocycline only every other day? Why do I feel worse on the second day?
all best, 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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1coyote
Member in Phase 3
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Posted: Fri Jun 15th, 2007 03:33 |
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Yes. No confusion here, except in my terminology, perhaps. I was simply pointing to whatever it is that may be happening beyond the first couple doses. The accumulation could be simply that of time.
But thanks so much for your vigilence! It is this dedicated oversight  that keeps us on track!!
Phil
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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1coyote
Member in Phase 3
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Posted: Wed Jun 20th, 2007 02:25 |
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Start MP Phase 1 = 5/28/'07 Benicar 40mg q6h
Start Minocline = 6/10/'07 25mg q48hr
Start Minocline = 6/16/'07 50mg q48hr
I had intended to stay on the Mino 25mg q48h for 2 weeks, anticipating some noticeable herxing early on. But nothing significant showed up, so following the rubric of pushing the herx to the edge of tolerable, I upped the dose, being a long way from intolerable.
So at the end of 1-1/2 48hour cycles, the only reaction above baseline would be perhaps more fatique and dysequilibrium. But even that is not continuous. I'm thinking of stretching this current cycle out to 72 hrs. instead of 48, out of curiosity if nothing else.
Just received my light meter  and will check out my environs to adjust to 30 lux where possible.
Could it be that excess light intensifies herx in some and inhibits this in others? "Therepeutic" level of 25D is <15ng/ml. Does this imply that the "therapy" may not begin until that lowere level is reached? In which case I may want to do another blood draw. Or more likely, just wait it out...
1coyote
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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Carole
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Posted: Wed Jun 20th, 2007 03:40 |
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Hello, 1coyote!
As you may be aware, there are many opportunities to be successful on the MP. Adjusting the pulsing and ramping of the antibiotics, with your physician's approval and guidance from the moderators, can be very beneficial. The experience one gains as time passes definitely provides the knowledge needed to better understand the process.
The immune response of fatique and dysequilibrium is classified as immunopathology, so please know that what you are experiencing is important. Why am I dizzy and/or fainting?
Does Benicar cause dizziness?
Avoidance of light is necessary because of the effect of light on the brain (amygdalla).
It is of course very important to reduce the 25-D as soon as possible, but beginning the MP will initiate positive changes immediately.
For more information, please reread the essential information in ABOUT THE MARSHALL PROTOCOL and the alphabetized links in the ABC of MP.
Best wishes and take care as you begin your journey to wellness! . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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1coyote
Member in Phase 3
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Posted: Thu Jun 28th, 2007 02:28 |
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Start MP Phase 1 = 5/28/'07 Benicar 40mg q6h
Start Minocline = 6/10/'07 25mg q48hr
Start Minocline = 6/16/'07 50mg q48hr/q72h
So far on the minocycline, I have completed 2 doses of 50mg q48h and 2 doses of q72h. No significant difference between the 2nd and 3rd days, so I am going back to q48h.
Since beginning the Mino, looking back on this period, there has been a gradual building up of leg weakness, fatigue and dysequilibrium. Above my baseline, that is, as those are central ongoing symptoms for me. But I hesitate to label that a clear immunopathology response.
Today however, I experienced what I could actually term a 'herx'. I have just now begun to exercise on a mini-trampoline, as walking does not work for me anymore. A mere 5min. was enough for starters. An hour later I was taken by a sudden bout of fatigue and dizziness and had to lie down. This also was 13 hours since my 50mg dose of Mino.
Whatever the trigger, I am pleased to be experiencing stronger reactions to the protocol. But still there's a lot of slack to be taken out of this rope. So the 30th will be 2weeks on Mino 50mg and I will up the dose to 75mg. And will ask the doctor for another blood draw to test the D levels.
That's the plan for now... 
1coyote
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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jrfoutin
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Posted: Thu Jun 28th, 2007 03:01 |
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1coyote,
That whole process of identifying what is immunopathologic response and what is not is rather pesky for some until one gets the hang of it. In the mean time, here's an excellent quote from page 7 of the Phase 1 guidelines that helps clarify when in doubt:
"A Herx reaction may be an increase in current Th1 inflammation symptoms, a return of previous symptoms, or emergence of subclinical symptoms."
Sometimes antibiotics take a week or more to "kick in," so that is why the Phase 1 guidelines (Step Eight at the base of page 8) bolds that instruction set in the second bullet item.
and the note underneath that:
"Do not try to 'speed up' therapy by using a higher dose of Minocycline than the minimum needed to elicit a tolerable Herx reaction. These are very slow-growing bacteria, and there is no need to hurry."
It is a good idea not to move too quickly through the ramping as you don't want to arrive at dose levels higher than you want to tolerate.
Slow and steady seems to win the race with the MP. Morris in phase 3 has a turtle mascot that helps remind me, too.
Best to you 1coyote--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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1coyote
Member in Phase 3
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Posted: Thu Jun 28th, 2007 03:27 |
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Janet -
Thanks for your insights. Translating what you just said, I will extend the Mino 50mg q48h another for a third week w/out getting (too) impatient. 
1coyote
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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1coyote
Member in Phase 3
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Posted: Sun Jul 8th, 2007 01:54 |
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Start MP Phase 1 = 5/28/'07 Benicar 40mg q6h
Start Minocline = 6/10/'07 25mg q48hr
Start Minocline = 6/16/'07 50mg q48hr/q72h
Start Minocline = 7/6/'07 75mg q48hr
It is now almost 24hrs. since my first dose of Mino at 75mg. Nothing notable has shown up so far. Just the usual fatique and dysequilibrium. Frame of mind, outlook and disposition have all been good. No changethere either.
My blood pressure the last couple days has been running at 80/55, quite low. Normal for me is ~115/75. This is probably the cause of increase in dizziness, fatigue above baseline rather than any IP reaction, wouldn't you think?
I have ordered a second blood test for D levels. Will report back when they come in.
So far, so good.
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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Aussie Barb
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Posted: Sun Jul 8th, 2007 03:20 |
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Thank you for your post
see My blood pressure is already low.... ?
Why am I dizzy?
Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself.
: If necessary, lay low, stay in bed, drink adequate fluids, eat salty foods and wait for the symptoms to wane. Tools to check:
all best, 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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1coyote
Member in Phase 3
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Posted: Mon Jul 9th, 2007 01:59 |
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Thanks, Barb.
One additional question. Since I'm having my blood sucked anyway, are there any other tests aside from D levels that would be useful or informative or track progress?
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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Aussie Barb
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Posted: Mon Jul 9th, 2007 03:03 |
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see the FAQ What tests do I need to monitor my progress on the MP?
Dr Marshall says: Some doctors are accustomed to repeat testing to monitor disease progression and they fail to inform their patients that the tests do nothing to change the course of treatment.
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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1coyote
Member in Phase 3
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Posted: Thu Jul 19th, 2007 03:28 |
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Start MP Phase 1 = 5/28/'07 Benicar 40mg q6h
Start Minocline = 6/10/'07 25mg q48hr
Start Minocline = 6/16/'07 50mg q48hr/q72h
Start Minocline = 7/6/'07 75mg q48hr
Start Minocline = 7/12/'07 100mg q48hr
I upped the mino to 100mg after only 6 days at 75. This was somewhat unintentional: came time to take the dose when it was inconvenient to split the capsule, so what the heck, I took 2 instead of 1-1/2. Wasn't expecting dire consequences as my herx rxn had been quite mild to date.
With three 2-day cycles under my belt at 100mg, the herxing (mostly fatique and reduced strength) has been incrementally stronger but well shy of limits. So the question is how much longer on this mild Phase 1 before moving to Phase 2?
Bearing on that question, the results from my recent D tests came in at
1,25D, pg/ml 25D, ng/ml r
7/09/07 - 51 22 2.32
4/20/07 - 41 24 1.71
That 25D of 22 is still a long way away from the <12 ng/ml target and perhaps the culprit behind the timid herxing. After the month and a half of Benicar, I was expecting the D to drop more.
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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Aussie Barb
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Posted: Thu Jul 19th, 2007 04:10 |
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Thank you 1coyote
For most, there is usually some time to wait to get an appointment with the Dr. It is a good idea to make your appointments in plenty of time so that you have your next medication ready to start as soon as you need to, with no delays.
see this FAQ Where can I find phase two and three? for information re sending an email for the Questionnaire to fill and return so that you have plenty of time to read and discuss the Information re which meds and doses with Staff in phase 2/3 forum before going to your Dr.
all best, 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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jrfoutin
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Posted: Thu Jul 19th, 2007 04:26 |
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1coyote,
25D is known as the "stored" form of D and although 1,25D will come down pretty quick with Benicar, your 25D can prove to be a little more stubborn. The expectation is that it may take several months for the stored 25D to come down and some have found it didn't come down a lot longer than that.
How often should I test D levels? What are the target numbers?
If your initial 25-D was above 20ng/ml: It is recommended that you retest your 25D to make sure it is near or below the therapeutic level of 12ng/ml. There is no need to retest the more expensive 1,25-D..
The Importance of Reducing 25-D
You noted you were expecting more immunopathologic response at different dose levels and you've moved through them without anything significant in the way of response. We know that the ideal levels of 25D in the 12ng/ml or lower range will give a true response to the meds, where those with 25D in ranges like you are reporting can miss some of the real impact of immunopathology until the numbers come down.
That is one of the reasons those with higher 25D are warned to move cautiously through the levels during Ph1 and monitor their 25D. If tests show it isn't coming down, then one needs to be more vigilant scouting out possible ingested forms that are slipping through diet.
Dr Marshall said: "The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids.
The stores of D gradually drop, it just takes time. Meanwhile, if you are responding OK then you will be progressing fine. Just be aware that one day the 25-D will drop, and as it drops your symptoms may increase, and you may need to reduce the abx dose. <<<
You might reflect on the responses you are reporting. It would be a shame to think you are getting a full whammy from your immune system at all these levels you've jumped through and then get yourself to a point where you might not be able to tolerate the response when your 25D actually drops.
Better to consider your choices at this point in time from the position of knowing your immune system may not yet have started responding per ideal range. Wherever you go from here, just please move cautious as your 25D drops to the ideal range.
Best to you 1coyote--Janet
____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Aussie Barb
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Posted: Sat Aug 11th, 2007 16:59 |
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1coyote
Thank you for filling your questionnaire. You are now able to read the Information in the Phase 2/3 forum.
We encourage you to begin a new progress report there in that forum to discuss the Staff recommendations re Modified Phase Two as most suitable to your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you..
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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1coyote
Member in Phase 3
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Posted: Mon Aug 13th, 2007 02:53 |
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Start MP Phase 1 = 5/28/'07 Benicar 40mg q6h
Start Minocline = 6/10/'07 25mg q48hr
Start Minocline = 6/16/'07 50mg q48hr/q72h
Start Minocline = 7/6/'07 75mg q48hr
Start Minocline = 7/12/'07 100mg q48hr
I have been 10 weeks in Phase 1, about to move into Phase 2. My herxing thus far has been very mild, perhaps because my 25-D has dropped to only 22ng/ml, still above the therapeutic level of 12ng/ml. I have been following all the guidelines to what I have considered a reasonable degree, including adopting the beginnings of a low carb diet. But obviously there is yet more to be done. 
So my intention is to lower the 25-D into the therapeutic range without becoming obsessive over details of little consequence. I have always been a believer in the "80/20 rule". But to follow this I need to know the quantitative effect of the changes I make to daylight and diet.
As for sunlight exposure, is there some formula that relates the vitamin D produced for a given area of exposed skin under ambient light of so many lumens, e.g.: (exposed area) x (intensity) x (constant) = vit.D/hour
As for diet, the program "Cron-o-meter" recommended on this site using the USDA database, shows zero vitamin D for many (if not most) of the foods we have been told to avoid. Other nutrition handbooks I have do not list vitamin D content. I would like to know quantitatively how much D I am ingesting, but don't have the resources to do this. Where shall I look?
Rather than freaking out over life style restrictions that could have trivial benefit, I would rather do the cost/benefit calculation. I have had MS for 15 years and am expecting to be on the MP for the long haul and would like to set myself up for success rather than failure.
Thanks for your help!
1coyote
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MS (Prim. Prog.) dx '92| Osteoporosis dx '01| Tinnitis dx ~'00 | D test of 4/20/07: 1,25D=41pg/ml; 25D=24ng/ml; 7/02/09: 25D=9ng/ml| no meds | 5/27/07P1, 04/02/08P3| wearing Noir
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P.Bear R.N.
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Posted: Mon Aug 13th, 2007 07:34 |
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1coyote, I certainly see the chemical engineer in you! There is no formula for skin area and exposure time related to "vitamin" D production, since there is so much variability in the population and some of us might produce much more than others due to our level of skin involvement and also skin color. Some also will reveal a so-called deficiency even in the light of substantial sun exposure based upon their own level of physiologic conversion to 1,25-D. The USDA database is woefully incomplete. I do like the chart found here as a good place to find the foods best to avoid:
Food Sources of "Vitamin" D
USDA databases compiled in the 1980s list the following foods as rich in "vitamin" D. The amounts given are for 100 grams or about 3 1/2 ounces.
results in IU
Cod Liver Oil 10,000
Lard (Pork Fat) 2,800
Atlantic Herring (Pickled) 680
Eastern Oysters (Steamed) 642
Catfish (Steamed/Poached) 500
Skinless Sardines (Water Packed) 480
Mackerel (Canned/Drained) 450
Smoked Chinook Salmon 320
Sturgeon Roe 232
Shrimp (Canned/Drained) 172
Egg Yolk (Fresh) 148
(One yolk contains about 24 IU)
Butter 56
Lamb Liver (Braised) 20
Beef Tallow 19
Pork Liver (Braised) 12
Beef Liver (Fried) 12
Beef Tripe (Raw) 12
Beef Kidney (Simmered) 12
Chicken Livers (Simmered) 12
Small Clams (Steamed/Cooked Moist) 8
Blue Crab (Steamed) 4
Crayfish/Crawdads (Steamed) 4
Northern Lobster (Steamed) 4
But it too leaves out several important sources like certain medicinal mushrooms, and fails to take into account that a food's levels of D can vary with time of year. Any animal fat will have D, and it seems reasonable to avoid most pork unless you boil the hell out of it and drain the water if the level in pork lard is accurate. If one eats meat the leaner the better, and one hopes D was not used as a tenderizer in a feedlot somewhere. We recommend using the lower fat cheeses until one's levels are way down. One has to add to the list all the foods that are now having D added if one wants to do a cost/benefit calculation. It is problematic that some foods have not been properly tested; so we just have to do the best we can based upon the knowledge we have.
best, P.B.
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