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skeeter
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Posted: Tue Aug 12th, 2008 18:28 |
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I have just started taking Benicar 3x/day and Minocycline 50mg every other day(my Dr wants everyday and then to ramp up to 100mg). My D-125, and D25 appeared normal to my Dr. and I am not really avoiding Vitamin-D or sun. I have the classic symtoms of chronic fatigue and have struggled but maintain my career and an active outdoor lifestyle (certainly not what it once was). I have a heart stent so I also take plavix, coreg, asprin and niaspan and for my thyroid levothyroxine(50mg).
I have been on minocycline 1x/day for a week and now the benicar 3x/day for two days (skipped today's minocycline).
What are your thoughts on this course and possibly what you think I can expect to feel?
I know this is very general info but I am glad I have a Dr. that finally recognizes I don't feel well (I tested exposed to several infections) and is willing to explore treatmant options.
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CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Rico
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Posted: Tue Aug 12th, 2008 19:07 |
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It's important that you and your doctor understand the MP and follow it as described - please read these carefully...
Important Safety Warnings About the MP
Before You Begin the Marshall Protocol
PHASE ONE of the Marshall Protocol <<< following this
What is the Marshall Protocol?
Simple Explanations
The Importance of Reducing 25-D
The Effect of Sunlight/daylight and Bright Lights
Your doctor may wish to join the Private Section for Health Professionals so he/she can discuss it with other professionals
You should consider posting your D-test results - How to post your D-metabolites tests results
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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Chris
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| Joined: | Wed Oct 24th, 2007 |
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Posted: Tue Aug 12th, 2008 21:35 |
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Skeeter,
Re: I have been on minocycline 1x/day for a week
Please read, and have your doctor read, this page:
What should I know about Minocycline?
This page answers the questions:
Why do we take minocycline only every other day?
Why do I feel worse on the the second day?
The pulsed use of antibiotics is key to making the MP work.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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skeeter
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Posted: Wed Aug 13th, 2008 14:15 |
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Thank you Chris,
I am familiar with the MP overal having read it's material off and on for two years and getting discouraged being unable to find a supportive doctor until now. I realize I have to drive the bus towards my recovery but also need to work with my Dr.
My question;
If I take the benicar 3x/day and pulse the minocyline 50mg every other day (which I am currently doing) and attempt to minimize (trying to eliminate) the intake of vitamin D (presently I am unable to avoid sunlight) will I still recieve benefits toward recovery and should I expect any immunopathologic reaction or am I still missing something very important. For a week I have been doing what I have discribed without any terrible side effects.
I am seeking direction because the MP literature at times is alot to digest.
Thanks,
Skeeter
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Chris
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Posted: Wed Aug 13th, 2008 15:08 |
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Skeeter,
I don't see your D-tests results posted. Different doctors have different ideas of what's 'normal' for the D levels. It could be that your D levels are above the therapeutic range. (which note I can't put my fingers on right now, and I do have to leave for work.)
The other thing is that not every bug is affected by every antibiotic combination. I'm one of the 'lucky' ones, each new conbo knocked me flat. But others have reported little to no herx from one or more combinations.
Please post the numeric values for your D levels, and be careful until the D-25 is below the therapeutic level.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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skeeter
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Posted: Wed Aug 13th, 2008 16:29 |
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Chris,
1,25-D - 36
25-D - 23
How do these numbers look? Any feedback?
Thank you again,
Skeeter
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Chris
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Posted: Wed Aug 13th, 2008 20:48 |
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Skeeter,
The method for getting a formal response to your numbers is to post it here Help with Understanding D-metabolite tests. P. Bear watches that and will give a medically informed opinion. There's an instruction page on How to post your D-metabolites tests results, mentioned earlier by Rico.
I did look around and find that the therapeutic level for 25D is 15ng/ml, which is below where you are, and well below what most Docs think of as normal. This number is on page 3 of the Phase 1 doc, available here.
The notes on Phase 1 suggest at least a week before ramping doses. The notes on phase 2 talk about ramping up no faster than every 20 days. With a heart condition, I don't think you will want any surprises.
I'm not medically trained, nor is this board the place for specific medical answers (other than the comments on D-test results). What I can suggest in an non-medical way is patience and diligence. Be patient about results, and ramp up slowly. Be diligent in your efforts to get your D-25 levels down.
Have you gotten into the 30 lux lifestyle yet? Bought your gallon of Blue Lizard sun-screen yet?
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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skeeter
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Posted: Mon Aug 18th, 2008 12:30 |
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| Is ibuprophen (advil) ok to use for common aches and pains?
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Rico
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Posted: Mon Aug 18th, 2008 14:43 |
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This should be of help:
Medications To Avoid on the Marshall Protocol
PAIN CONTROL
BENICAR-Basic Information
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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skeeter
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Posted: Wed Aug 20th, 2008 20:01 |
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I have been taking benicar 3x/day and 25mg minocyline everyother day and avoiding vit. D in my foods for two weeks. I also take plavix, asprin and coreg for my corinary stent. I do not avoid sun light but do not unnessisarily bask in it.
Today I had blood test for d-25(previous test was 23), thyroid, liver and lipids we will wait for results.
I am feeling very tired and experience muscle weakness which I am attributing to a herx. I am struggling but seem to be able to make it through the work day.
Question: How long should I stay at 25 mg of mino and/or should I try 50 mg and see what happens; and longer term when I am able to handle 100 mg every other day how do I go about progressing to phase 2?
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Julia
Advocate (on leave)
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Posted: Thu Aug 21st, 2008 00:54 |
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Skeeter,
For your safety, it's vital that you're familiar with the Phase 1 guidelines. They say,
- Allow a week or more between increased doses
to make sure the Immunopathology is not more than the patient wishes to tolerate.
So you need to be at mino 25mg every other day for at least a week - longer if the IP doesn't settle. Incidentally, if you're only taking benicar three times a day, please make sure you take it 'on the dot' of every eight hours, in order to keep up the blockade.
Your tiredness could be due to the profound hormonal adjustments your body is going through as it gets used to Benicar. But also you might be affected by the level of light exposure. Have you darkened your home? Are you avoiding unnecessary daylight outings, and covering up well when you must go out?
When you reach the stage of tolerating 100mg mino every other day, along with the benicar blockade, without too much IP, you're ready for phase 2. Your doctor has access to the details in the Private Section for Health Professionals. If s/he hasn't joined yet, you might like to print out these instructions:
Health Professionals are welcome, and will be manually joined into the database after sending an email to Moderators@MarshallProtocol.com listing their desired username and password.
-Note: Screen names which contain a comma within the name are not technically compatible within our system. Note: You may wish to choose a username that allows you to remain anonymous.
-In your email, please include your name, and your professional details, your contact information including phone, email and office address, and if previously registered, the screen name under which you are registered.
We will respond to your request as quickly as possible. Please also feel free to call Dr. Marshall at 805-492-3693
You should ask your doctor to print you a copy of the phase 2/3 instructions and guidelines.
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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skeeter
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Posted: Thu Aug 21st, 2008 13:02 |
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Julia,
Thank you and all the others who watch over our progress and guide us. I am in no hurry to accelerate through this process at the risk of my health and will be at 25mg for another two weeks (busy schedule). I will also work at being more punctual taking the benicar. I never miss taking it 3x/day however it might be 7hrs or sometimes 9hrs between.
Should I try and have my doctor write a script for every 6hrs @ 40mg? Will it help me feel better?
I have been described by my cardiologist as an A++ personality (tightly wound, assertive and head strong) but working on it (many think it’s my greatest attribute when things have to get done or I am coaching athletics).
I can currently "power" through my fatigue and muscle weakness because it's worse at different times of the day. I have NoIr's but haven't had the need to use them.
I am watching carefully my D food intake but not overly careful with light expose (would prefer to stay reasonably outdoors active as long as tolerable)
Question two: Obviously not as efficiently as avoiding sun light, but am I still making progress and is the increased fatigue and weakness a herx reaction indicating the process is working?
Thank you for your input,
Skeeter
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Julia
Advocate (on leave)
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Posted: Thu Aug 21st, 2008 16:52 |
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Skeeter,
It's hard to judge how much of your fatigue is herx and how much is due to light exposure, not keeping a tighter schedule of benicar, and not protecting your eyes. The MP is a tightly-knit program consisting of four strands of treatment - vitamin D reduction, light reduction, Benicar and antibiotics, held together with a healthy lifestyle including rest, real food and gentle exercise, to give your body the best chance of recovery.
The other factor that will affect your progress, as Chris mentioned earlier, is your 25-D level. As you eliminate vitamin D from your diet it will gradually come down, but it may take a month or two to come down to the level where it isn't hindering your progress. The Importance of Reducing 25-D.
Most members have found a six-hour schedule for Benicar to be better at relieving IP symptoms. It also means it doesn't matter if you happen to be a bit late taking a dose. Eight hours is the absolute max.
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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skeeter
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Posted: Thu Aug 21st, 2008 17:33 |
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Someone asked this question which I am also worried about:
"I have read allot of info and maybe I should already understand this, but I don’t really. Does light exposure to the eyes while on the MP actually potentially harm the eye or does it just make you feel bad for all the Vitamin D reasons??
I am thinking of starting but there is so much mixed info on the web. "
I have been on the protocol as described above without using my NoIr's lens because they are being cut to fit a pair of frames and I won't have them back for another 5 or so days. I seem to be tolerating sun light ok but am I damaging my eyes and if so what should I do until my NoIr's are ready?
Thanks you,
Skeeter
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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skeeter
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Posted: Thu Aug 21st, 2008 18:04 |
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I also read that anticoagulants shouldn't be used. I am presently taking 75mg of plavix daily to prevent possible clotting because I have a heart stent. What is the opinion of this treatment in conjunction with MP? I am on the MP with both of my DR’s aware of what I am taking. What are the inherent dangers?
There is so much info to try and digest.
Thanks,
Skeeter
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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skeeter
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Posted: Fri Aug 22nd, 2008 18:33 |
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My initial results were about 6 months ago and I was not on MP drugs. I do not know the lab name.
125D-36 25D-23
Since Aug 11 I have been on benicar 40mg 3x/day and minocycline 25mg every other day.
I have been watching my vit D foods and waiting for my NoIR's (next Wednesday). I am working and do not avoid normal sun light.
This week I stopped taking Niacin and my daily Asprin but continue to take Plavix and Coreg (I have a stent) and Levothyroxine.
My recent 25D was an alarming 42 on 8/20/08 and I was taking the above meds and MP meds.
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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P.Bear R.N.
Research Staff
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Posted: Fri Aug 22nd, 2008 20:44 |
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Skeeter, Your initial results will be evaluated first.
Your 1,25-D was elevated at 36pg/ml (the population average is 25-29 pg/ml). It is 0.74 sigma high and based on population studies, 77.05% of the population would be expected to have a lower number. If sample was mishandled as many labs will do your number would have been even higher. We typically see results in those with CFS that are even higher.
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 osteoporosis, 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 initial 25-D of 23ng/ml was high enough to somewhat blunt immune resonse. Because 25-D is immunosuppressive, you need to avoid ALL sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see Foods To Avoid and The importance of avoiding vitamin D.
"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." Dr. Trevor Marshall, Ph.D.
Your new level of 42ng/ml might indicate a hidden source of ingested D or may happen in a few who are loosing weight. Sun exposure can also be a factor in some since you have not been covering up as is needed.
Your D-tests, diagnosis and symptoms indicate Th1 inflammation. Please see Symptoms of Hypervitaminosis-D and you may recognize a few more. You will not get well and your health will continue to deteriorate if you don't treat the underlying bacterial cause of Th1 inflammation with the MP. Please see Is the MP an applicable treatment for my disease?
Most supplements and many medications must be avoided on the MP.
Our clinical study is temporarily closed to enrollment. As vacancies occur, we will admit subjects based on an application. To obtain an application forum, please send an email to marshallprotocol2@yahoo.com with 'request MP application' in the subject line.
Would suggest 40mg q 6hr dosing of Benicar minimum for someone with CFS.
best, P.B.
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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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skeeter
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Posted: Sat Aug 23rd, 2008 16:15 |
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Thank you P.Bear,
I will be getting hard copies of my labs this weekend to verify the accuracy of my numbers and dates and resubmit them.
I am working with two doctors, my primary and cardiologist, I have a stent (he is skeptical of MP), and a more holistic doctor encouraging me. The onus of my treatment is on me as they are not the ones that will pour through all this required info, and for me it is still a lot to digest to make sure I get it right.
I take plavix because I have a coated stent. Is this ok? I am afraid to do this.
I take coreg (probably more profilacticly and could probably stop if needed)
I stopped my daily asprin.
I stopped my colesterol med Niacin (will watch diet closely)
Also of great concern, my 2% NoIR's will not be ready until next week and I have been on Benicar for two weeks and feeling very tired and forgetful. Also I have a vacation schedeled in three weeks that I need to participate in with is outdoors. Did I start the benicar prematurely? Am I damaging my eyes? Can I or should I stop my treatment (benicar) till after my vacation? And for indoor use will 40% at 80%IR NoIr's still be beneficial because the 10% is awful dark indoors for me?
Regards,
Skeeter
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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P.Bear R.N.
Research Staff
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Posted: Sun Aug 24th, 2008 07:41 |
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Skeeter, The plavix I suspect must be continued in your case. Coreg is OK but may be weaned off if BP is improved enough with Benciar and your heart rate is under control. Benicar is helping protect your eyes but you may need better light protection until 2% NOIRs arrive. Any dark green welding glasses will do in a pinch and they are widely available for a reasonable cost. 40% NOIRs are fine indoors. I would not encourage outdoor activities until you know what devastating effect the light and the heat can and will have upon you. If you plan on ignoring recommendations I would stop the Benicar until you are willing to get with the program.
good luck, P.B.
____________________
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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skeeter
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Posted: Sun Aug 24th, 2008 14:31 |
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P.Bear,
Thank you again.
It appears my ducks aren't completely in a row(alot for me to understand interpreting most of this on my own). It's obvoius I am responding to the treatment and I now have got a support group around me (doctors and family). I have one big commitment left for the summer in the next few weeks and would like to fulfill it while I continue to eliminate D from my diet, get my NoIR's from the lab(they are fitting the lenses to a MP recommended frame) and get a pair of indoor lenses.
From my recent reactions while on benicar it appears I may have to speak with my employer about my condition and the MP (can't just show up wearing NoIR's). This may require documentation from my doctor and a week or two may be the time I need. My doctor also recommended previously I should probably start in the fall and she may have been right.
Question: Can I stop the benicar cold turkey without weaning off it. Also will I go back to feeling like I did before the benicar which wasn't great but better than I feel on it now?
I am a A++ personality and it should be apparent I am committed to try this program (lab test, seeking a supportive doctor for 2yrs and fighting to get the medications approved) but may have started prematurely. I have a history of when committing to a program seeing it through. Having been on the the meds for only two weeks would it be ok to stop for a few weeks to get these commitments behind me then start back up in earnest with all the ducks in order?
You are very helpful,
Skeeter
____________________
CFS 125D/30 25D21 on 10/24 Ph1oct1 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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