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Sallie Q
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Posted: Fri Aug 22nd, 2008 23:45 |
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my D levels are anomalous, Doc. may advise challenge on the MP protocol.
I think I can make a temporary low light life in my home with the black sofa cushions and yards of black material left over.
I also realize both kitchen and bedroom have overhead lights in the old style…… incandescent bulbs with dimmers, way to go’
But the bathroom lights are all fluoro;
How long would I need to stay on the challenge?
As I must have NoIRs before I take benicar could I get by temporarily while testing the waters with one pair of NoIRs @10% and stay indoors?
[ I may be able to get leave on medical grounds]
thanking you for excellent info and supp rt while bumbling about.............SallieLast edited on Sat Aug 23rd, 2008 00:36 by Sallie Q
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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wytnez
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Posted: Sat Aug 23rd, 2008 00:07 |
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Hello SallieQ,
You should be fine using your 10% Noirs inside. Just be careful to stay away from the windows. I used dark curtain (thick) on my windows and did great.
Best to you.
Saj
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Sallie Q
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Posted: Sat Aug 23rd, 2008 00:43 |
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Thank you Saj, Is LED light kinder to the eyes?
I have a close use LED torch switchable 1 , 8 or 21 LEDs
I also have a non switchable lamp with about 45 LEDS
I could use that in the bathroom, it occurs to me that the light fittings will likely not take incandescent bulbs instead of compact fluorescent, because of the heat from the old style bulbs........SallieLast edited on Sat Aug 23rd, 2008 00:49 by Sallie Q
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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JRFoutin
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Posted: Sat Aug 23rd, 2008 00:47 |
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Sallie,
Good reading:
Protecting Your Eyes
The Effect of Sunlight/daylight and Bright Lights Best to you Sallie--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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wytnez
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Posted: Sat Aug 23rd, 2008 00:48 |
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I actually used candle light in my bathroom in the morning while showering and getting ready for work. I believe as long as the lighting is 30 lux you should be ok. But the candle light worked great.
Saj
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Sallie Q
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Posted: Sat Aug 23rd, 2008 01:16 |
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Thx again Janet, I've read through the text of Meg's work and am gradually following up the links. the one that concerns me is the amygdala reactions.......think I experience some of those already although have never thought myself light-sensitive, I suppose it creeps up on one, as these beastly little bugs do.
following through on some of that leads me to finding out more on cardiac care, so I have a lot to discuss with doctor soon; begin to wish I had a printer.... want to prepare well for the challenge (unless can just do the 1,25D test over)
How long would I likely have to stay on the challenge to get unequivocal signs?.............Sallie
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Sallie Q
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Posted: Thu Aug 28th, 2008 04:10 |
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Am still struggling with new home computer, I read somewhere on MP site that white light and blue light are fiercer.
Can usually set a background to dark colors, But it took weeks to find how to change screen brightness. Desk-top computers have it easy find on base of monitor usually RHS, or RHS lower screen .
This portable has brightness in <Control Panel, <Performance and Maintenance>,<Power options>. 
I found it after a month, got rid of the brightness and most of my headaches, forgot where the control was and while looking found the 'appearance & themes' bit.
My background picture is now autumn leaves [took some finding within <Control panel> <Appearance and themes>. Most of the themes were shining blue seas and/or blue waters. The frame for my background I've set to dk red, and have all my www. page headings olive. Looks better than it sounds and I feel much better.
PS , I missed describing my thread, and could not access to edit. If someone is not too busy could I have sub-title Description, please. Appropriate in more ways than one would be 'the light through the fog' Sallie Q
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Sallie Q
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Posted: Fri Sep 5th, 2008 01:36 |
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thank you thank you all, Saj I love that idea about candle lit bathroom.
question re my part time job which frequently requires concentration and multi-tasking. At present I work Thursday and Friday each week,
seems I might maintain my performance during Phase One by working a Wednesday Friday Tuesday Thursday fortnight. That may be possible to arrange but would be a bit of a hassle for my boss and the pay section, they don't like change more often than annually. So, can Phase Two of the protocol continue the 48 hour pattern of medication and hopefully have what appears to be an opportunity for normal functioning in the 8-12 hours before one takes the next dose of whichever antibiotic meds it will be ? ...........Sallie
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Julia
Advocate (on leave)
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Posted: Fri Sep 5th, 2008 10:13 |
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Sallie,
You may be worrying unnecessarily. I was able to keep working mornings, and survived by having an afternoon nap; some have continued full-time work. Your IP is fairly controllable by adjusting the meds.
Not everyone has a clear good day/bad day pattern of IP. Phase 2 IP is not the same, so there's really no point in making long-term plans or changing your work commitments till you see how it goes.
Julia 
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Sallie Q
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Posted: Sat Sep 6th, 2008 03:50 |
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Thx again Julia, have not read your story yet or any of ‘the cohort’, saving those for when I need a treat. I’m still smarting from my dearly beloved telling the Doc. I was incapable of planning ahead (?). He (hubby) thinks I’m a candidate for Alzheimers, she does not, my thoughts on the big A would look like one of those graphs that curve up and down, the normal distribution I think it is. 
Have decided LED lights can be quite strong I am using with care. At present using polaroid wraparounds (Cancer Council) outdoors pro tem and indoor to watch TV as am more comfortable. I've assembled all the curtaining, extra clothing I’d need including some MP requirements I was going to fudge, I've even got hold of some 2% NoIRs, my friend does not need them any more; think I'm nearly ready to go or at least to challenge; however my Doc. has held off prescribing, pending further thyroid tests and MRI, but . Breaking news my 3rd thyroid test shows swing back to my 1st, so I don’t have to go back on thyroxin before I’m allowed to challenge, I do like to keep things simple.
Doc. has done a good job helping my husband to understand what the actual problems are and convincing him she is a bone fide Dr! (I think she shows every indication of being possibly a brilliant Dr). The Better 1/2's even going to pay for an MRI (because it's low radiation and I have had radiotherapy in past, also CAT scan): I wouldn't be surprised if he found it easier to deal with a brain tumour than getting his head around the science and the medical paradigm shift......no more questions at present..... Sallie
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Julia
Advocate (on leave)
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Posted: Sun Sep 7th, 2008 15:19 |
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Sallie, tell DH to forget the Alzheimer's. Many (most?) of us have been there, done that... sold the tee-shirt when we got our minds back on the MP 
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Sallie Q
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Posted: Tue Sep 23rd, 2008 06:14 |
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Chris, or Wrotec, pls
How does rutin fit in?
Is not chlorogenic acid but is also in tobacco (from MP site) .
My pet tablet was Crampeze containing Mg ~70mg, citrus bioflavonoids 150mg, B6 10mg, Rutin 200mg
Pill works too fast to be the mineral or vitamins, so like chlorogenic acid in coffee the rutin must be hitting VDR or PXR? And so I should leave it alone unless absolutely necessary?
Hey, just remembered Google, see Rutin is mentioned in same articles as Quercetin, which I think is an aid to serious herxing in phase 2 or 3
While waiting for Googled article to appear, I note rutin mentioned in connection with buckwheat. I had buckwheat bread last week and have had no fearful footcramp since (ankle, usually; vein can swell visibly); thought it was because I am on leave and although sitting at computer a lot I am not stressed while doing it as happens most days at work.
Googling shows rutin in Hawthorn. Meds to avoid on the MP says Hawthorn can react with benicar. I’ve been on beni 6 hourly for 3 full days now and I feel fine (too good actually, I’m waiting for something interesting to happen, have tiny herxes 0.5 on scale of 1 to 10)
What to do, if I get foot cramps should I try to use ice pack only (difficult when trying to sleep, which is when it happens). I’ll talk to my doctor at end of week, maybe should ask for quinine as per Julia’s advice to lwood.
Does hawthorn reduce effectiveness of benicar? if so does rutin play a part in that?
Sallie
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Sallie Q
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Posted: Wed Sep 24th, 2008 22:31 |
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Good afternoon USA, good morning Oz & NZ, good evening Julia
I’ve checked my last question and see on site that hawthorn can effect benicar in a particular way. I have no intention of taking hawthorne or anything else not checked as OK by MP unless absolutely necessary, however, re severe cramp toes/ankles etc:
I realize that when I start mino, possibly this afternoon, I would need to be very careful what time I took any magnesium.
Sometimes one tablet only relieves the cramp and I can sleep, sometimes I need two.
I have never taken more than three in a 30 hour period and only seem to need them every 3 to 6 weeks. Thankyou Cynthia for reminding me (well not me it was someone else, but thank you anyway, fghead here needed the reminder) to clarify quantities
Is it OK to take this tablet with rutin in, I suspect rutin provides the early relief.
Crampeze containing Mg ~70mg, citrus bioflavonoids 150mg, B6 10mg, Rutin 200mg
cheers ........ Sallie
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Julia
Advocate (on leave)
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Posted: Wed Sep 24th, 2008 23:18 |
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Thank you for doing your own research
A number of our members use plain magnesium (ask your pharmacist) rather than Crampeze. I'm not sure that anyone knows the answer to your question, but it would be simpler not to muddy the waters!
Stay at least a week on Benicar alone before starting mino, as per the Phase 1 guidelines. Meanwhile review all the links in Before you begin...
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...
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Sallie Q
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Posted: Thu Sep 25th, 2008 00:04 |
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[size=Thx Julia, have learned heaps with a ‘little’ help from you and Janet and gentlemen advocates too numerous to mention; I did slip up when I talked of starting mino today (f ggy me) it’s actually ring my doctor today]
[size= ]
[size=I have made myself a calendar type spreadsheet to keep trak (today is actually day 6) and project things to do, including possible actions; it tells me possibly start mino Sunday (after checking with doctor who is very MP aware and hands on, which is why I never applied to join study… seemed a lot of people around in July who needed support more)]
[size= ]
[size=Doc expected me to call in yesterday, but I delayed starting the probe until I had located a medical Timer, so as to take my benicar on the dot of 6 hrs apart and wait for the sky to fall in since my D25 is low and I had a lot of neuro symptoms while in the sun. Still waiting and getting bored (sooner or later I will wish for bredom) no dizziness and am so even tempered that my husband wouldn’t recognize me if he could find me in the darkened house]
[size= ]
[size=I’ll try the google assist for complex searches this morning, have not needed to so far, as found all my complex questions ready answered on MP sites or Amy’s ‘blog’]
[size= ]
[size=Thx again .. ]Sallie
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Julia
Advocate (on leave)
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Posted: Thu Sep 25th, 2008 16:18 |
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Sallie Q
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Posted: Sun Oct 12th, 2008 22:38 |
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My PCP approved upping mino to 75 two nights ago, at this stage though, I intend to nsert one 72 hr dosing schedule each week or two and observe difference if any. I could have done before but at first thought I did have at least one severe herx.
However on observing my IP pattern am convinced my worst experience is definitely light exposure related. From what I read light exposure results in a hormonal cascade; which somehow produces in me horrible evening or night pain in calf of one leg, sometimes pain in other as well. I don’t understand why I do not get neuro symptoms from this (yet? I go back to work next week & will have trouble c mpletely avoiding light)
Since my calf is comparatively unexposed to the sun, in the middle ages I would simply have attributed the experience to witchcraft and blamed my neighbours. I can certainly ‘blame’ my neighbour for lack of sleep last night. At midday he knocked on the door in answer to DH’s request for a good time to view the model of his proposed house extension. Since I was already in my indoor NoIRS although not properly covered and his front door was only seconds from ours, I ducked in for a quick look but with DH and neighbour’s kids was socially trapped for ~ ½ hr instead of 5 min max.
Am now sure the below the knee bugbear is produced not just by sun but by indirect light as well (must be a slw learner )
Sallie Q wrote: Good afternoon USA, good morning Oz & NZ, good evening Julia
re severe cramp toes/ankles etc:
My herxing has been relatively mild so far (the old friends revisited types with very few surprises) and I assume mildness is from immunosuppression by the increased D ……. 2 unavoidable excursions related to DH plus avoidable incident above (guess I’ll have to move my long coat to the front door and keep my kitbag with gloves etc nxt to it.
I also note from another thread that as I appear to be losing weight since diet modification this too can release stored D
I guess my question is could the foot spasms and toe cramps I used to get be similar genesis to the calf spasms I now get? Who else gets an apparent morphing of light related IP (pls let me know if it is incorrect to say IP when hormonal, not CWD breakdown) Thx ..........Sallie
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Julia
Advocate (on leave)
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Posted: Mon Oct 13th, 2008 12:04 |
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Sallie,
Calf muscle spasms are a common reaction to too much light when you're on the MP - a 'sun flare' rather than IP. The agony certainly taught me to stay out of the light! Are you taking the magnesium? They do go away
Why does exposure to natural light increase symptoms?
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