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P.Bear R.N.
Research Staff
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Posted: Mon Aug 25th, 2008 18:01 |
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Skeeter, It would be fine to stop the Benicar "cold turkey" and resume when you are ready. How you might feel would be highly individual as your hormones will be reshifting again.
good luck, 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
Member
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Posted: Wed Aug 27th, 2008 16:08 |
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 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 28th, 2008 20:40 |
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Skeeter,
About light in the eyes, please see:
Photosensitivity During Recovery From Th1 Inflammatory Disease
Protecting Your Eyes.
Will immunopathology cause increased eye inflammation?
On Anticoagulants:
Is it safe to take anticoagulants while on the Marshall Protocol? (Plavix = clopidogrel) You might like to print out this info for your doctor and discuss it with him/her. Then be guided by your doctor.
Julia 
PS A nurse moderator said to someone else with a stent:
In my opinion it is a good idea to be on anti-clot medication(s) after stent placement...
We do require that those who are on any blood thinners to have frequent labs drawn at first while on the MP to make sure things are in the proper range. "I have been absolutely clear from day one that unless the physician looking after the patient is prepared to take 100% responsibilty for adjusting the anticoagulant dosing then any patient on anticoagulants is precluded from starting the MP."
Dr. Marshall
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Always consult a physician
Essential Info; FAQ; Julia's story
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skeeter
Member
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Posted: Wed Sep 24th, 2008 17:05 |
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As you can see, I was not 100% on track getting started in mid August and stopped as suggested to work with my Dr to get better on track for try #2.
Since mid-August I have worked hard at minimizing my D intake. Wore "Blue Lizard" zinc cream when not covered up completely. Also, I got my benicar and mino prescriptions squared away. Brought my cardiologist on board and is supportive. (I have a drug alluding stent and he is requiring I stay on Plavix 75 mg and coreg 6.25 mg). Purchased all three levels of NoIR's amber lenses and will have my D levels tested this week and will post them. Also, I have squared away some time off at work to get started.
Questions:
1- Am I missing anything? I am starting Oct 1st.
2- My Dr wants me to ramp up my benicar. Is that necessary or can I begin 4x/day right away?
3- Once I am taking Benicar 4x/day, how many days before I can or should start the mino?
As I have stated before, there is a lot of info to digest and I apologize if my questions are elementary.
Thank you,
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 215 |
| Status: |
Offline
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Posted: Wed Sep 24th, 2008 17:40 |
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1. Review this checklist.
2. The guidelines specify starting at the full dose. See Why shouldn't we ramp up the dose of Benicar?
3. See the Phase 1 guidelines, specifically Step 6. A quote from there:
It usually takes a week or two to stabilize symptoms on the Benicar blockade alone. This means that any additional symptoms have waned or resolved, and the patient feels able to tolerate an increase in symptoms from the expected Herx reaction with pulsed Minocycline.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Julia
Advocate (on leave)
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Posted: Wed Sep 24th, 2008 17:50 |
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Skeeter, welcome back.
1- Am I missing anything? I am starting Oct 1st.
See Before you begin the MP
2- My Dr wants me to ramp up my benicar. Is that necessary or can I begin 4x/day right away?
Phase 1 guidelines, step 6
Why shouldn't we ramp up the dose of Benicar?
Benicar dosage and schedules
3- Once I am taking Benicar 4x/day, how many days before I can or should start the mino?
Phase 1 guidelines, steps 6-7:
It usually takes a week or two to stabilize symptoms on the Benicar blockade alone. This means that any additional symptoms have waned or resolved, and the patient feels able to tolerate an increase in symptoms from the expected Immunopathology with pulsed Minocycline.
Please note that there are two groups of members on this site: those who are also members of the MP study (who post mainly on the main study site MarshallProtocol.com, including obligatory weekly progress reports, and receive MP advice and support from experienced nurse moderators), and those who are on the MP independently, through their doctors.
If you want to be placed on a waiting list for study membership (there is no guarantee that a place will ever become available) please see MP Memberships Temporarily Closed for instructions. We would dearly love to be able to help everyone, but we have a very small band of volunteer nurses, backed up by a very small band of volunteer advocates.
All doctors are welcome to join the private Professionals' Forum, where all the help and support they need is available, as well as access to the whole protocol from the start. Those who are on the MP independently must refer to their doctor for medical issues, and learn to search the MP 'library' on the study site to find information.
All the information you need is in the MP 'library' on the main site. Here on this site the advocates are happy to act as 'librarians' to help you find what you need to know to make your MP journey a success. Please use the search facilities first to see if your question has already been answered - see How to do a site search.
Non-members might also enjoy reading the members' informal discussion board MP-Lifestyles.org.
There is no medical support available for independents, but you're welcome to ask non-medical questions that can be answered by more experienced members. Any medical questions exclusive to your own case must be addressed to your doctor. There is no need for independents to post progress reports, though you're welcome to drop in here occasionally and let us know how you're getting on.
We are very well aware that this situation is far from ideal for independents, but the only alternative we could see was to close the whole thing down to anyone who wasn't in the study.
Please make sure you know the following essential information thoroughly:
Phase1 guidelines - print one out for you and one for your doctor, and refer to it often.
FAQs Easy Finder & the ABC of MP - use with the search facilities to find information.
Essential Information About the MP - take this a little at a time!
Read, read, read... and let us know if you can't find what you need... 
[Sorry, Josh, we must have been writing at the same time!]
Last edited on Wed Sep 24th, 2008 17:54 by Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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skeeter
Member
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Posted: Thu Sep 25th, 2008 13:11 |
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| Julia thank you. If I understand the response correctly, I should start the benicar at full dose and allow a week maybe more to measure its effects before starting the pulsed mino.
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 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 Sep 25th, 2008 16:21 |
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____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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skeeter
Member
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Posted: Wed Oct 1st, 2008 23:29 |
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I have started again:
I have got 2 weeks off work to start.
Benicar 3x/day and will go to 4x/day in the next day or so.
I have been trying my best to avoid ingesting vitamin D for a few weeks and still waiting on D test drawn last week and will post.
I am keeping my house as dark as possible (kids coming and going to school and activities)
I cover up and wear zinc sunblock on areas not covered(neck and hands) and 2% NoIR's when I go outside.
I also got the NoIRs in 10% and 40% because last time I started I was not noticably photosensitive and currently can't see a thing inside with the 2% NoIRs.
Questions:
Am I still protecting my eyes inside with the 10% and 40% NoIRs because I can't see indoors with the 2% NoIRs?
Also I plan to start pulsing the mino at 25mg every other day a week into the benicar (I am two days into it) Is this about right or should I stay on the benicar longer before starting the mino?
Are there any other suggestions?
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 215 |
| Status: |
Offline
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Posted: Thu Oct 2nd, 2008 00:02 |
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My rule of thumb with the NoIRs is to wear the darkest pair that I can see with. So if I can't see, I switch to a lighter pair, and if I can't see with the lightest pair, I figure it's probably dim enough that I don't need to wear them.
Of course if you're extremely photosensitive this may not be the case, and you may just have to put up with darkness sometimes. Also remember that even the 40% pair will block 100% UV and IR. Personally, I can't see indoors with the 2% NoIRs unless it's a brightly lit environment like a supermarket.
Regarding when to start minocycline, the guidelines say to wait until your symptoms have stabilised on Benicar alone (and at least one week). This doesn't necessarily mean you feel better, just that your condition is not changing day to day.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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natalie17
Advocate
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Posted: Thu Oct 2nd, 2008 07:41 |
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Hi Skeeter,
JoshR's advice about the NoIRS is pretty spot on & I follow the same rule.
As far as neck and hands not being covered most members wear gloves & scarves. Any area you can physically cover is best covered.
You also might like to see;
When should I start minocycline?
Take care,
Natalie
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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skeeter
Member
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Posted: Thu Oct 2nd, 2008 20:00 |
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I have started again: OCTOBER 1st
I have got 2 weeks off work to start.
Benicar 3x/day and will go to 4x/day in the next day or so.
I have been trying my best to avoid ingesting vitamin D for a few weeks
I am keeping my house as dark as possible (kids coming and going to school and activities)
I cover up and wear zinc sunblock on areas not covered(neck and hands) and 2% NoIR's when I go outside.
I also got the NoIRs in 10% and 40% because last time I started I was not noticably photosensitive and currently can't see a thing inside with the 2% NoIRs.
Questions:
Am I still protecting my eyes inside with the 10% and 40% NoIRs because I can't see indoors with the 2% NoIRs?
Also I plan to start pulsing the mino at 25mg every other day a week into the benicar (I am two days into it) Is this about right or should I stay on the benicar longer before starting the mino?
Are there any other suggestions?
My new test numbers are discouraging, I thought my 25D would be lower with the precautions I am taking with food. I resumed the MP on 10/1, the tests were drawn on 9/24
125D: 44
25D: 24
I do not know the lab or whether the sample was frozen.
Meds: Plavix 75mg(drug alluding stent), coreg 6.25 mg, levothyroxine 50mcg
Previously I ate a great deal of saltwater fish. I have since stopped.
Regards,
Skeeter
Last edited on Thu Oct 2nd, 2008 20:01 by skeeter
____________________
CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 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: Thu Oct 2nd, 2008 22:41 |
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Skeeter, Very few people would need the 2% NOIRs indoors. Most use the 10% when watching TV or using computer until they become less sensitive. It can take some time for 25-D levels to slowly drop and I would not worry about it since you can still kill many microbes as level wanes. Most people start the Mino after one or two weeks on the Benicar.
best, 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
Member
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Posted: Mon Oct 6th, 2008 18:47 |
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Hi all,
I have been taking benicar 4x/day for about a week, avoiding D in my foods, covering up when outside and keeping the house dark. I feel very tired, forgetful and at times shakey but nothing intolerable. All but on the brightest of days when going out can I see through the 2% NoIR's. I feel more comfortable and safer wearing the 10% outdoors and the 40% indoors. Honestly I am not sure I am experiencing any severe photsensitivity yet. I feel the same with or without the NoIRs. What am I missing? And if I continue with the 10 and 40% lens am I still making progress? I know how I feel can change as my D level drops and the mino increases and I will need to think about returning to work( I took 2wks off to get started). It would be less stressful for me ( I have a highly visible position) if I could get away with not wearing sunglasses indoors but not at the expense of MP progress. If I am able to make progress even at a slower rate, I might be ok with that.
I started 25mg of mino today.
Thank you,
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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skeeter
Member
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Posted: Mon Oct 6th, 2008 18:51 |
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I am sorry, one more question:
If I can't avoid sunlight as extensively as recommended but continue to diligently remove D from what I eat, can I still drive my D value down to were it needs to be?
I am disapointed with my last test result. I was hoping it would be lower.
Thank you again,
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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natalie17
Advocate
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Posted: Tue Oct 7th, 2008 07:14 |
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Hi Skeeter,
The thing to remember is that any symptom may be caused or increased because you are not protecting your eyes. You may be sensitive without having any problem with actually seeing light/not wearing your NoIRS.
You will still make progress not wearing NoIRS but it may make the journey more difficult.
Suggest reviewing-
Protecting Your Eyes
Dr Marshall wrote: "The short-term consequences of not wearing adequate eye protection will be an increase in neurological symptoms caused by stimulation of the Amygdala in the brain. These neurological symptoms include fatigue, irritability, aggressiveness, lack of concentration, brain fog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychosis."
The light sensitivity is part of the healing process, and will wax and wane throughout the MP .. As you recover you will get to the point where you can't see anything through those dark glasses any more.
Again with the sun exposure.. if you can get your 25D down below the therapeutic level of 12ng/ml then you will be making steady progress, but sun exposure is something else that can increase or cause any or all of your symptoms, therefore making the journey more difficult.
There's only one way to find out if your D will go down without avoiding sun as much as reccommended and that's to try it, but many have had a lot of difficulty getting there D down because of inadequate sun protection.
AVOIDING SUNLIGHT and BRIGHT LIGHTS
How and why to protect skin and eyes while on the MP
Take care and good luck,
Natalie
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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skeeter
Member
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Posted: Thu Oct 9th, 2008 16:53 |
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I will not have the luxury of shutting work down for a long period of time. I was able to take two weeks off to start the MP and can take days off here and there when I feel lousy. Before starting the MP when I felt terrible at work I powered through it got home and crashed. I can't live this way so I researched and started the MP with a very supportive Dr.
I don't work in an office, I manage a very public facility that requires me to be out and about doing inspections and dealing with people. I should be able to get away most of the time wearing 40% NoIRs indoors (purchased custom Rx pair recommended on this web site and will look like a rock star) and the 2% outdoors but my business attire (suit) will have to account for the natural light protection. Wearing a hat and gloves when in the field dealing with the public in my position will be to awkward, however I do have 6% zinc cream for exposed areas. Obviously I am working hard at not ingesting food with D.
Questions:
With the above said, will I still be making progress when I return to work? I am in no position to lose my job yet can't continue feeling the way I have. I know the conditions are not ideal. With what I am doing above, will my 25D still be able to get to theraputic levels in the teens (currently my 25D is 24)?
Second, I have been on benicar 4X/day for nearly two weeks and mino 25mg every other day for about a week with no unmanageable reactions (got a mild rash and a lot of muscle twitching), can I bump up to 50 mg even though my 25D is still above 20? I know as my D goes down reactions may be worse.
Please help me with recommendations or opinions because I am committed to getting better for my family but have to work.
Anxious,
Skeeter
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CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 224 |
| Status: |
Online
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Posted: Thu Oct 9th, 2008 17:36 |
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Hi Skeeter,
Well, it may be a tough road, but you may be able to do it.
Your biggest concern should be sun protection. You'll want to beef up your sunscreen for sure. I highly recommend making your own - you won't smell like a cabana boy with the home made stuff and you can push the zinc oxide levels up above 10% to get more protection. See http://www.mp-recipes.com/Sunscreen.html
There have been some experiments done with zinc oxide shampoo too, and it appears to have some effect. If you have to go without a hat, this might make the difference. I suppose you could add the zinc to your existing shampoo and see what happens. It makes my hair a bit stiffer, as if I'd been out in a dusty environment, but doesn't show. Of course, if you want to make your own shampoo base (no scent, no dyes) I have a recipe for that too, and you can get the ingredients from the same place as you get the zinc oxide powder.
In a nutshell, here's what you'll want to shoot for:
Sun protection- Better lotion
- Always on face/neck
- Have some to put on your hands every time you go out or wash them
- Maybe try zinc oxide shampoo
- Wear layers of dark clothing (black polypro undershirt if you can get away with it)
- Hat whenever possible - You can't wear a fedora or something with a suit? Think 1940s! Google "mens hats" and you'll find lots of hits. Might as well get a good one and look sharp, right? If Bogart could wear a hat, why not you?
Food- Try to avoid eating at restaurants - you never really know what's in it!
- Bring your own snacks and lunches
You sure 40% noirs are enough inside? I always wear 10% at work. There's no sense in giving yourself extra symptoms. You might want a pair of 10% fitovers to have on top of your 2% for sunny days when driving alone.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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skeeter
Member
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Posted: Thu Oct 9th, 2008 20:08 |
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Knocken,
Thank you, I have a bunch of "Blue Lizard" 6% cream purchased earlier at the recommendation of another advocate. I hope it works as well as your recipe.
Regarding the sunglasses, I have all three lenses 2% 10% and the 40%. Currently I cannot see well at all inside with the 10% and my vision for inspections when I return to work must be as good as possible. Also, as my 25D drops will I become more light sensitive? I don't feel much different with or without the sun glasses but wear the 2% outside and the 40% inside.
I have had no intolerable issues 1 week on 25 mg of mino and 2 weeks of 4x/day benicar, can I increase to 50mg?
Skeeter
____________________
CFS 25D11 on 12/17 Ph1oct1 Ph2dec6 Plavix coreg levothyroxine 2%NoIR only outside 10 and 40%NoIRs inside. Returned to work
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 224 |
| Status: |
Online
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Posted: Thu Oct 9th, 2008 21:45 |
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I have had no intolerable issues 1 week on 25 mg of mino and 2 weeks of 4x/day benicar, can I increase to 50mg?
Sorry, there is zero medical advice given in this forum. Consult the documentation for Phase 1 and/or ask your doctor.
You may become more light sensitive as you progress and your D level drops. Everybody is different. Remember that it isn't always what it feels like to your eyes that matters, the light can set off all kinds of neurological things that will give you problems. Anxiety, brain fog, insomnia, etc. They can hit a day or two after exposing your eyes. Having a blanket policy of protecting yourself as much as possible at all times is the safe and sensible way to go, especially if you are getting more potential exposure than most people.
6% zinc is pretty weak. You may find you want more. It's not a place I'd scrimp. The downside is increased symptoms, and you'll have enough trouble doing your job without making them worse.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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