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Aussie Barb
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Posted: Sun Jan 2nd, 2005 21:36 |
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 Dr Marshall wrote: "Not only is the sun block insufficient, the concept that it will allow you to freely move out-of-doors is flawed.You cannot change the way your body works as it heals. Nobody, not one person, has managed to recover without drastically changing their lifestyles during their recovery."
Light avoidance FAQs:
The Effect of Sunlight/Daylight and Bright Lights
Avoiding Natural Light and Bright Lights
Protecting Your Eyes
Why is my 'herx' more intense after exposure to Light & / or Vitamin D ?
Incident Radiation Tutorial
How do MP patients travel to/from work avoiding light?
What are the recommendations regarding sun/light exposure?
Photosensitivity During Recovery From Th1 Inflammatory Disease
Why does exposure to natural light increase symptoms?
Do car windows, weather or geographical location affect the amount of sun exposure?
Testimonials to the need to wear adequate eye protection
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Mon Jan 3rd, 2005 05:27 |
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mort wrote:
Today, I went shopping, dining, and shopping, some more, with a friend (first time out in days). As I felt self-conscious wearing the NoIRs downtown, I didn't wear them except when driving. Suffice it to say, I am paying the price! 
My eyes hurt even now that I'm wearing the glasses at home. While I was out, the first couple of hours were fine without them, but then it became a painful experience to be without them....then the nausea set in....and the headache. The most frustrating thought was this discomfort was not due to herx, but to light sensitivity, etc. I probably undid in one day the good I had built up in the past week.
Lesson learned.  These NoIRs and I are becoming inseparable! 
Mort: 09/22/04: D,1,25=50; D,25=18.1
10/01/04:MP STARTED. Sarc:Lungs,Skin,Heart,Sinus,Mouth,&Throat. Aortic Regurgitation. MEDS:Benicar40mg/6hr; Minocyclin 50mg; Advair; Effexor; Nexium; CoQ10(for heart
Caroline Stronge wrote:
The most light sensitivity Samantha experienced was on a trip to the mall - she had left her glasses in the car presuming she wouldn't need them inside.
Needless to say the shopping excursion was cut short because she felt so ill and she's hardly been without them since!!
Samantha: 14years RA since 2001
Mobic 15mg 9.13 1,25 65 pg/ml, 25-D 28 ng/ml
11.5 1,25 33 pg/ml, 25-D 37 ng/ml
Benicar 11/28 40mg/day,12/2 40mg bd,12/9 every eight hours,12/16 every six hours. Mino 25mgq48h 12/20, 50mgq48h 12/28
Tami wrote:
RE: Avoiding Light
Posted: Mon Dec 20th, 2004 04:22 pm
Started Benicar December 9, 2004
On the 17th, I overdid, and I drove 150 miles at night on a busy interstate w/o eye protection. (Can't see to drive with my NoIRs.) By late evening I was running a fever of 101, was bedridden with fever for about 36 hours. Severe frontal headache, severe low back and hip pain, muscle pain, sustained muscle contractions causing contortions, very weak, more than usual sensitivity to certain sounds. Slept on and off from late Friday evening to Sunday afternoon, Today, still weak, low fever on and off.
Tami
Posted: Tue Dec 21st, 2004 11:03 pm
I've learned the hard way I have to be absolutely diligent with avoiding lights.
And my learning problem in this area sure isn't due to the lack of information, or warnings from the MP site.
I guess until I experienced it, well, it's really quite amazing to me, that absolutely everything I've read about the cause and effect of it all, is so right on. I've never had a medical experience like this before. We are all so awesomely fortunate to have access to the MP.
My sweet husband went out while I was sleeping and bought colored sheets and low watt incandescents. I awoke to the sound of the electric staple gun. He darkened all the rooms I frequent even more. I am truly "cave-dwelling."
This light avoidance is essential. I know, I know, you're all saying, REALLY!!!!? We need a duncecap Emoticon
I'm feeling better, fever down, tremendous headache still.
Thanks to all for the help and support. Tami 
Tami: FMS CMP CFS MCS Dementia TBI OA RSD MI MVPS C.Pneum thyroidectomy Pos ANA ParvoVirus
avoid D/light,NoIRs Lexapro Atenolol Trazadone Estradial Prometrium Synthroid Aspirin
Vit E CoQ10 other meds on file Ben.Q8H Mino.25mg QOD Dec 1,25D=11.8 25D=12.5
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Mon Jan 3rd, 2005 06:34 |
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Arlene wrote: Don't go into the light....
Yes indeed the light getting into my eyes seems to be the trouble with the muscle cramps, weakness and flushing.
I am a lot better since I received my Noirs, although it is only one week.
The rx seems to take place within a few hours of getting strong light into my eyes and dissipates within a day or so ............
I must say that the idea of that little amount of light being the trouble was difficult to absorb. .
Arlene Arlene: Lyme 2yr,hypothyroid,restless leg,CFS 10yr,sleep distb,1,25 D-68,25 D-18,Synthroid,Mirapex, Ambien,Allegra,Astelin1x/d,Benicar 12/2/04
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Mon Jan 3rd, 2005 06:59 |
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 GeorgeinRollaMO wrote: Reenie,
I agree wholeheartedly with you and Meg that is is extremely important to STAY AWAY FROM ALL LIGHT.
Not doing so compounds the bad affects on the body.
I realize now just what has been happening by my not "cave-dwelling" as I did in the beginning.
Family circumstances brought this upon me, and I have to correct the circumstances, and start "cave-dwelling" with a vengance.
There is herxing, and there is hormone flare. When one gets both at once, look out! My worst herx ever reported above was probably just this two-fer affect.
Day 90 on Benicar, q6h, Nov 30, Day 57 on Mino
No herx, but hormone flare continued today. Must become more anti-social!!!! I think I will........ just sit in my darkened office, and write a book!
Have come to the decision, as mentioned by others on this BB, that I have to stay in a dark environment.
When I do not, my 125D hormone goes bananas.... increases.
I really "caved dwelled" from shortly after learning about the MP in June 04 until around the beginning of October when I could no longer control my light exposure as rigidly due to circumstances. I am back on track!!! I hope! Every thing else will be put on hold!
Controlling the acquisition of light is very important to turn the immune system on against those bacteria! Dark Vader
When a man marries a woman, they become one. The trouble starts when they try to decide which one!
George: 125D = 57, 25D = 61 on 7/14/04. ACE = Normal. Benicar 9/1/04. Mino 10/5/04. Borreliosis, infected 3-31-00. New 125D = 66, 25D = 43 on 10/25/04.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Mon Jan 10th, 2005 15:06 |
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melinda wrote: Jan 10, DAY 124 of MP
DAY 111 of full protocol
Today is monday
I did go to walmart and because I was buying some clothes I needed to see the colors so I didn't have my Noirs on...so payback... got that old familiar feeling like low blood sugar with sweating and weakness. It hit me after about 30min in the store. Got my Noirs on quick and got out...didn't sleep well that night.
Took a number of light attacks to make me a believer.
On.....on Melinda
Melinda: Lyme's since 1999 ? before.3rd relapse July 2004.
parathyphoid fever 1986 hepatitis B 1973
D25 32 D125 58. Aug 20th
Started MP Aug 25th Benicar 40 q6hrs
Full protocol Mino q48 hrs Sept 20th
Noir glasses and no Sun.Quercetin prn
Armour Thyroid 60mg
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Aussie Barb
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Posted: Tue Jan 11th, 2005 01:38 |
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 Meg Mangin R.N. wrote:
Serum levels of 1,25-D are only a guideline. We know that the paracrine level is much higher in every case. But it's impossible to say how much higher. I hope you'll trust our experience with over 300 sarcoidosis patients, some of whom had low levels of 1,25-D like yourself, that the MP doesn't work unless you avoid sun/lights and ingested Vitamin D. Your sarcoidosis may be manifested primarliy in your skin but your inflammation is still perpetuated by the excess production of 1,25-D in those (and other) tissues to protect the bacteria. Until you begin to wear NoIR sunglasses, you cannot be sure that your do not have any photosensivity. And until your begin to avoid all forms of Vitamin D, you will not know what affect it has on your immune system's ability to kill the bacteria.
When you think you are ready for phase two, please let the administrator know. She will send you a questionnaire to help you determine if you are ready to take this important step.
Compliance with all the aspects of the MP is very important to ensure your safety and success. Our experience has told us that some people will proceed to phase three before they are ready or compliant. We have seen more than one person end up in the emergency room because of this and we don't want to see that happen to you.
Our reputation, although far less important, is also at stake. People who are not following the MP exactly and fail to recover will be misleading people or doctors who are considering the MP.
Best,
Meg
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Tue Jan 11th, 2005 02:28 |
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 Belinda: Research Team wrote: I once was quite skeptical that normal exposure to sunlight had anything to do with how ill I was. I knew that I couldn't tolerate sunbathing or a long day outdoors, but I found it hard to believe that simple sunlight could make me ill. As a result, I became quite ill from normal sunlight exposure, after my sarcoidosis diagnosis. Simply avoiding sunlight and all sources of vitamin D resulted in some improvement in symptoms, but certainly not recovery. It took months on the Marshall Protocol for my skin lesions to resolve (and that included avoiding sunlight).
Did you know that the latest research reports that skin is an autonomous organ for production of 1,25-D? http://tinyurl.com/65nrc
That's why it's important to limit your daylight exposure, because the resulting 1,25-D in your skin will be keeping your lesions exacerbated. Also, activated macrophages that are present in sarcoidosis lesions will be producing more 1,25-D than in a normal person.
Trevor has said that "Both the metabolites 25-D and 1,25-D are produced in the keratinocytes of the skin. But, more important, the skin regulates the amount of 1,25-D it generates. http://tinyurl.com/4cewb Thus it is not only the kidneys which regulate 1,25-D it is also the skin. If you have a very low 25-D (many of us are running below 25-D measurement threshold at the moment) the skin still tries to generate the 'correct amount' of 1,25-D."
I hope you will experiment with protecting yourself from sunlight. I think you will see a difference, over months. I would hope for you that your sarcoidosis will be arrested before it affects any more organs. Belinda: DX: sarcoidosis April 2001, with systemic symptoms +decade. Prior DXs: fibromyalgia, pneumonia, TMJ, 12 dental fractures, nasal polyps, chronic sinusitis. Benign growths removed prior to DX.
Currently, 2+ years on MP, no symptoms, but still Herxing
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Jan 20th, 2005 02:59 |
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mort wrote: I need to get back to reading all the info available at the Marshall sites! According to AVOIDING VIT D at SarcInfo.com: "Patients who have controlled their level of 1,25-D have discovered that the most annoying neural symptoms of Sarcoidosis have also disappeared: fatigue, irritability, panic, depression, and sleep disturbance."
I have been off of Xanax for two months and all anxiety and panic have left me.
If nothing else occurs, thank-you all for this amazing result, as anxiety and panic attacks in the middle of the night interrupt living during the day and can make life miserable, not to mention the burden of enduring them while they occur. The attacks ceased after I began eliminating Vit D from my diet and lifestyle. Only after reading the above reference did I make the connection. Free at last.
Looking back at my past posts, I did comment on dropping Xanax and the cessation of panic attacks, but at the time, I thought all this was due to Benicar.
The significant point of my post is that decreasing levels of Vit D is actually responsible. Most importantly, I have some control in all of this.
Anxiety, panic, depression, etc., did not occur in my life until my early 30s at about the same time I began having the first symptoms of Sarcoidosis, namely fever, involuntary anorexia, and overwhelming fatigue.
Seventeen years later I have the answer to the bewildering symptoms beginning back then.  Though I must say, better knowing now than never. I feel sorry for those who never learn the answer.
Once again, I find my experiences with the MP, which tend to mirror the experiences of others on MP, to be quite intriguing.
I feel quite emotional as I write, feeling the burden of panic attacks being lifted from my shoulders--quite unexpectedly, I would like to add. Thank-you, Dr. Marshall and all the others who have aided and supported you, for your valuable contribution to our lives and well-being.
Mort:
09/22/04: D,1,25=50; D,25=18.1
10/01/04:MP STARTED. Sarc:Lungs,Skin,Heart,Sinus,Mouth,&Throat. Aortic Regurgitation. MEDS:Benicar40mg/6hr; Minocyclin 100mg; Advair; Effexor; Nexium.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Mon Jan 24th, 2005 00:41 |
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 Author: Bonita Neher
Date: 01-23-05 10:51
For Christmas, I went 300 miles to my daughter's house. Originally, I planned to travel at night, but chance of snow/ice storm changed those plans. I donot drive on snow/ice. I came home in daylight. I will NEVER do that again. The only time for us to travel is after dark and before sunrise. My daughter in law wants to fly out her to see me. I told her to make sure her plane lands after dark and takes off after dark. I will not put myself thru that again. I honestly thouhgt I would die the day after I got home, I was that bad. I am a real believer in staying away from the sun and I live where we have 354 days of sun. I am, however, looking forward to the day I am cured and can go away without the fear of the sun. I am on MP now for 23 days and am doing great, I attribute this to avoiding the sun. Hang in there all and get well. Bonita (aka Barney)
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Aussie Barb
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Posted: Wed Jan 26th, 2005 22:13 |
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KFaucher wrote: Wednesday January 26, 2005 Full Protocol Day 47, Mino 50mg, Benicar 40mg Q8 (sometimes Q6, occasionally Q4), Quercetin 500mg 3Xday
I have been having mild herx on day one, with stronger herx on day 2, clearing up about 2 hours before the next dose. Just like clockwork. Untill Tuesday the 25th.
I have found that snow and sun create a very bright world! The reflection off the snow caused a few unforseen problems and I got a little too much light. Then to top it off I made a poor decision to take the dogs for a walk after work. It was the first time the temps had hit double digits in a week, the dogs were restless, so I strapped on my skis and headed out around the field. It's only a half mile loop but I had to cut that in half. The dogs are getting old and soft and were complaining about cold feet. I discovered that herx and exertion don't mix. I have rarely felt that physically drained. The three of us looked pretty pathetic limping back home.
Skipped the mino. Increased the Benicar. Still felt horrible. Left work at noon today and crashed for a couple of hours. Then managed to snowblow the drive without passing out. At least when it's snowing the sun is not shining, Feeling better now but will hold off on the mino until I have fully recovered. Will hold off on physical exertion for a while as well. Damn! these are the best skiing conditions we have had in years.<<
Meg replied:
I'm sorry to have to remind you that the protocol requires that you diligently avoid daylight as well as sunlight. Clouds do not obscure the rays that trigger the production of 1,25-D. I hope you will find someone to snowblow for you and confine your skiing to the hours of dawn and dusk. You can apply 2% Ketoconazole cream to those areas of your face that you can't cover. And please wear the darkest 2% NoIRs whenever you are forced to go out during the day. The snow is dazzling too here in Wisconsin when the sun shines. <<
Ken: "good days & bad days & going half mad days" J.B.
CFS 20 years 25D=30 1,25D=57 8/2/04
Avoid Sun 9/12/04, NoIR 10/1/04
Benicar q8hr 12/2/04, Q prn, mino 25mg 12/10/04
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Wed Feb 2nd, 2005 10:30 |
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Author: Mick B (dialup-4.229.171.178.Dial1.Detroit1.Level3.net)
Date: 02-01-05 06:24
Hello everyone!
I was a bit sceptical about the whole sun thing for a while. I wanted it to not be true because a great deal of our life is out there. I have been plagued with many symptoms in the last few years. Some bothersome some life altering. Gradual loss of sleep, till I stopped sleeping at all in 2000. Lymph removal 2001. Balance,fatigue etc the lack of proper grammer and spelling. I have ordered the Bolle supercell 100's that Meg suggested but I have yet to receive them. I had to remove some snow last week. I was in the sun and glare for maybe an hour. I covered and wore the darkest sunglasses I could find. To make a long story short. I was awake for 3 days. I still used the remeron and clonazapam prescribed by my Neuro 3years ago for PLMD but they do nothing against vitamin D overload. My body had a feeling like it was humming everywhere, My heart felt like it was trying to pump mud and my ears are still ringing. I just started wearing dark glasses for TV. For that last 6 years eye pain was so severe I had to shut them during commercials just to get some relief. Headaches every morning. Stoner eyes for the last 25 years. Last summer I drove 25 miles past a golf course that I have been to many times. I got lost, could not remember my own phone number to call home, and had no idea where I was. I am so glad I found this website because up till two months ago I thought I was just going nuts. I am not longer a skeptic. I started keeping a sleep log a few years back and I can see the pattern of poor sleep and inflammatory attacks and their direct relationship to light exposure or my overconsumption of vitamin D supplements.
Thanks for making me a believer!
I know that I am going to be much better soon.
Pulmonary Sarc,Lymph,Neuro,Joints Dx 1977,(Never Treated) CFS, Fibromyalgia, Chronic Sleep Disorders, EBV 1-28-05 Ace 59, 1,25 D = 40.3
25hyd= 22.9 No D since Dec 21-04 Starting MP=ASAP
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Aussie Barb
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Posted: Thu Mar 24th, 2005 23:37 |
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Mike27 wrote: As we all know, we need to protect our eyes from infrared rays in order for the MP to work.
Most of us use NoIR glasses because they are relatively cheap and durable in addition to being effective. The board suggests trying NoIR 901 and 907 as starting points, but recommends that you try different shades for different situations until you find what's right for you.
TAKE THEIR ADVICE!!!
I have been on the MP for 7 months. I have been diligent in avoiding vitamin D in my foods, avoiding sun on my skin, in wearing my outdoor and indoor NoIR's, and in keeping TV's and computer screens dimmed.
I have also been wearing nothing but dark clothing for months (even indoors, so as to avoid light being reflected from my shirt under my NoIR's).
Nevertheless, I've had some trouble herxing, even after starting Phase III abx after only about 6 months on the MP.
On a whim, I decided to start wearing my outdoor NoIR's indoors and raising up the brightness a little bit on my TV and computer screen to compensate.
It got me to start herxing again! I'm not saying this is the answer for everyone who seems stuck on the MP, but apparently the indoor NoIR's were not strong enough for me and I didn't even realize it. (I've also noticed a bit less brainfog as a result of using the outdoor NoIR's indoors.)
My guess is that my 1,25 D was just a little too high for me to kill bugs, and by using the outdoor NoIR's, I lowered the 1,25 D below the threshold.
So remember... the Board's suggestions for NoIR 901 and 907's are for the typical patient, but, by definition, we can't all be typical. So make sure to experiment with different NoIR's.
All the best,
Mike @ Cautionary Tale re NoIRs Mike: Lyme and mycoplasma infections since 9/03;
Began MP on August 8/19/04.
8/24/04- 25-D = 14.3ng/mL, 1,25-D = 76pg/mL; 11/29/04- 25-D = 13.8, 1,25 D = 63. Currently, Phase II, 40mg Benicar 4x/day, M+Z+B at full dosages
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Apr 14th, 2005 15:06 |
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 Chris wrote: I found out two things yesterday.
1) ketoconazole works.
2) When you forget to use it, any exposed skin
is too much.
On the way to work, I was about 10 miles down the
road and I remember I hadn't applied the ketoconazole
cream. I did have gloves, and a hat with drapes
that leaves only my chin exposed. I tried to hold
something over my chin to shade it on the rest
of the drive, but it wasn't sufficient. The shakes
started about noon, and kept up periodically until
3 AM. Chris: sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39
40x4 Benicar +Q, 100mino/48h/phase2 Dec/24/2004
tinnitus/depression/mental-fog/IBS/
carpal-tunnel/fatigue
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Aussie Barb
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Posted: Sat Apr 16th, 2005 20:08 |
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spacee wrote: I have had tachycardia for almost 20 years and for years have taken a beta blocker. I discontinued it when I started the Benicar q6h. I have two experiences to relate. When I first started the MP I thought I was doing the "staying out of the light" properly. But I would run an errand once a week in late afternoon, go to Walmart at night, go to movies at night. I wore all the protection but it was still too much daylight/light for my body. I had pressure like pain that felt like a heart attack several times and one day very low b/p but pulse has been ok. I stayed in bed checking my b/p every 15 minutes.
Ok, after having to stop MP for about 6 weeks and taking the beta blocker while off, I have restarted. (no beta b. again). Fellow MPer messaged me to STAY INSIDE (caps for emphasis). It has been 28 days and I have gone out once for an errand that HAD to be run and once for a doc appt. At night twice a week I run to a very small grocery store and stay no longer than 20 mins and I have been to drugstore at night to pick up rx a few times. Rented movies through Netflix (mail) has been wonderful. I have gotten into a routine and at times it is boring but for the most part I am making it just fine. No tachycardia or other cardiac symptoms except for a palpitation here and there. I check my b/p once a day right before I post.
You may know that Dr. T. changed the whole protocol for a short while (reduced the amount of mino to start and ramp up with) but after much discussion with board, decided that the CFS patients were not compliant with staying out of light and that was causing the cardiac problems. He went back to originial protocol.
Hope this helps you. I know tachycardia and the ortho hypo is the pits. I lost down to 108 lbs before I was put on the beta blocker. I can see why you are asking this question. One MPer did continue taking 1/2 of his betablocker when needed. I am sure someone on the board can tell you the pros and cons of that.
Best to you,
 Spacee @ HERE
Spacee: CFS/FM/tachycardia/bladder inflamation, skin inflamation.
C-Diff overgrowth 1995
Klonopin 1mg hs, Xanax .5mg HS, Premarin .625 Restart March 21
Benicar Q6H April 8 Mino 50mg
25D=25 1,25D=70
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Aussie Barb
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Posted: Sun Apr 17th, 2005 20:12 |
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Dr Trevor Marshall wrote: Paula,
I wish you didn't have to go 'to the extreme,' and one day we might develop a way of managing the hormone-D levels. But right now, light avoidance is the only game in town I am afraid. The only way to get to full recovery relatively smoothly.
It seems that people who do not understand the importance of controlling light have a very rocky road to recovery indeed. There are a few of them out there, and I keep an eye on their progress. Luckily, they do seem to improve, but at a much slower pace, and with the neuro-ill-logical symptoms following them much further into the protocol than with others who control their light exposure fastidiously from day 1.
..Trevor.. @ HERE
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Fri May 20th, 2005 08:09 |
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see this Topic: Ketoconazole cream - How is it working for you?
FAQ How does ketoconazole cream work?
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Aussie Barb
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Posted: Mon May 30th, 2005 21:53 |
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 paulalbert wrote: Not that I wasn't staying out of the sun, turning down monitors, shading windows, etc. before, but I have recently started wearing my shades even when it's dark out, when watching movies, etc.
The discussion about how a virus affects D levels got me to thinking that my body might be less sensitive to light and that I shouldn't rely on light sensitivity as a signal. So now I wear my glasses inside almost all of my waking hours.
The first couple days I did this, I felt terrible. When I went to bed at night, I could feel my leg muscles twitching. Since then, I've been feeling a bit better. Although I did have a day where I slept 15 out of 24 hours. That may have been due more to an odder work schedule than usual.
The hardest thing right now is the patience. It is especially difficult because I've improved before in the absence of strongly negative herx-like symptoms.
Paul Paul:
* diagnosed CFS June 2003; symptomatic since Sept. 2002; primary complaints: exercise intolerance, sleep problems
* on phase 3 of MP; take Quercetin + Benicar 3x/day
* began MP: July 2004
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Wed Jun 22nd, 2005 00:26 |
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derekr1 writes:
My NoIR glasses arrived today and they are wonderful. I have hated the bright lights for years. At last I could see in the bright sun and did not have a headache afterwards.
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Tue Jul 19th, 2005 00:46 |
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CJ Waterhouse wrote: re Family Adjustments:
"..... This protocol is not easy ...but gives you hope. I've had a few people comment- " you're going to make your families sit in the dark?!- Don't you think they will get depressed? "& ect... I was /am a little troubled by those things but truthfully ...how could I not do this when the alternative is so much worse! It's amazing what we will do for the ones we love. My family would say WE WANT YOU WELL. They are downright offended by those remarks. They have been so supportive and kind. I underestimated them.
A few short months ago I was so apprehensive about the MP. I was afraid I'd not be able to understand it or, how to rely on myself to be such a part of my care and to advocate for myself. You will get past that." << ......
CJ: Phase 1: DX pulm sarc 6/91 w/ bronc. Asthma . 8/04 25D 21/1,25D 69/ 4/05 25D 11/1,25D 33 Avoiding D& sun NoIRs.MP5.27.05 Benicar Q8H/6.14.05 mino25mg/6.23.05Mino50mg/7.7.05mino75mg Q48H
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sun Jul 24th, 2005 16:48 |
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 Lottie, Board Staff wrote: Betsy,
Remember that the covering up and the ketoconazole cream is meant to be used to help people when they need to go out. The best way to avoid sunlight, is to not go out in it at all. Shade doesn’t mean you are protected. Being under cover doesn’t block the rays that are reflected off of other surfaces. You’re wearing something around your neck aren’t you?
Also, heat can also cause an increase in the activity of the bacteria. So, try to stay cool. It was probably a combination of both the light and heat that did you in!
Experience being the best teacher, I hope that you have a better understanding now of the importance of avoiding sunlight. Don’t forget that the 1,25D can change during a 24 hour period, so you could have a “27” reading, go out in the sun for a very short period of time, and have it shoot back up to the “44” you had originally. The bacteria make some of the 1,25D, so with the sun, it’s easy for it to take a jump.
You’ll probably be all right on Monday to increase the dosage of minocycline, but be honest with yourself. If you aren’t sure if you’re ready for it, don’t increase it. You’ll still be killing some bugs, and will be less apt to have a “major” increase in inflammation to cause more discomfort. Remember, pain is Mother Nature’s way of getting your attention that something is happening that she would like you to take care of! You can do that by not going out in the sun any more than necessary, and don’t increase the antibiotics sooner than you’re ready for.
Behave yourself!! 
Lottie
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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