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Posted: Sat Aug 6th, 2005 15:49 |
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TESTIMONIALS to the Need for Avoiding Lightlink
From: geow
Date: 2005-08-06
Update: After reading some of the information on this site I think the strange symptoms (light sensitivity, burning muscles, faintness) were due to light exposure and not due to the Benicar. The symptoms all but disappeared when I returned to the 40mg dose of Benicar and completely stayed out of the sun/light and started wearing Noir glasses (outside and for the pc and tv).
I'm now on the full MP.
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Aussie Barb
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Posted: Sun Aug 21st, 2005 23:01 |
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Shamutooth wrote: 22nd cycle of phase 2
After the great advice from Reenie, Trevor, and others I have continued to eradicate any sources of D in my diet. Gone are all mushrooms,cheese, any fat on meat,bacon,and any pastries that may contain eggs.
I think I am starting to see results from my vigilance. I don't seem to have any more good days,and the herx seems to be getting progressively worse,even though I have not raised my dose of Z.
Especially problematic is my lower back pain starting on day 2 on my upper lower back(if that makes sense!)and then moving down to the sacro-iliac joint later in the cycle. Most of my bad herx days have me walking around bent over from the pain. My MCS symptoms are definitely getting worse on my bad herx days, a change from earlier days on MP when it seemed as if it was getting progressively better. Some other symptoms are my usual old complaints: lung pain,light coughing occasionally,fatigue,general flu-like symptoms,etc. A definite plus is my greatly increased libido lately  .
I tried an experiment while on vacation a week ago. I've harped on lately about how I don't seem to get any bad effects from sun exposure (besides eye sensitivity). I spent about 2 hours in the ocean with my daughter without any symptoms at all, that is until I tried to go to sleep. Insomnia for 2 straight nights was the effect I got, and was no fun at all, with a 16 hour drive home after . Live and learn, I won't be doing that again any time soon!
Sam
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SAM: Dx: MCS,CFS,IBS,insomnia,anxiety,depression,started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05; 6/28/05 D results 25D=29,125D=47
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Posted: Fri Sep 16th, 2005 01:42 |
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(filename)
Bookdad wrote:
GREAT NEWS!!!!! I got my NOIRS last night! yea!!! I put them on right away. I didn't notice any difference last night except that maybe I SLEPT THE WHOLE NIGHT!!!! this morning I FEEL GREAT!!!! I got a pair for outside, and a pair for indoors. I'm so excited! Boy if that isn't a testimonial to the program, I don't know what would be!
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Aussie Barb
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Posted: Tue Oct 4th, 2005 20:22 |
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 Robertrr wrote:
If you react anything like me, the day after you get on Benicar at the recommended dosage, you're going to have a tremendous headache or other reaction from the Sunlight..or artificial light if you don't stay away from it. I had been avoiding sunlight/artificial light and using NOIRs (but not diligently). It didn't take me more than the first sun flare to understand that I would not be able to do this any longer. Benicar will help make your 'need to avoid D 1,25' perfectly clear...so please pay attention to moderator's suggestions..they know what they're talking about.
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Posted: Sat Oct 15th, 2005 22:29 |
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(filelink)
Weekend at DisneyWorld
Thank you for your interest. No, I have not tried the Keto cream. I have so many allergies, that I did not want to try it. I stayed in the hotel till dark, after my exposure during the day, and how ILL I became, I think my family is finally understanding my need to be in the dark, as well as my own understanding that I can't care what others think right now. I have always tried to push forward, but, the light issue is too big, and has to be given the respect it demands. We have no other plans for meeting friends/family from NY in Orlando, and I must admit, I'm content to stay home and cave it. Hope your doing OK LORI
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Posted: Mon Oct 17th, 2005 04:23 |
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 Peter deJager wrote:
Got ready to do some more work in the house. One of my problems has been MCS, so I completely avoided doing any painting for years -- now it's time to catch up. I now realise that the MCS symptoms were not from exposure to chemicals, but exposure to light, so instead of wearing a respirator I now protect myself against light.......
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PdeJager: MCS/CFS (1990)1,25-D/25-D 1Jul05: 38/28. Avoiding sun/light/ingested D, using K-cream, wearing NoIRs, Benicar 40mg q8h 27Aug05, q6h 10Oct05, Mino 25mg 12Sep05, 50mg 16Sep05, 75mg 27Sep05, 100mg 13Oct05.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Sun Oct 30th, 2005 01:08 |
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LH1953 wrote: Progress. Lyme. MCS.
As we do the MP, I know how gloomy it can be to live like vampires. I thought about how exciting it is going to be when, I become one of those success stories . I see and feel a big improvement after only 9 weeks on the MP. My years of active therapy for Lyme, never brought me to this new level of better health. I'm looking at my cave life now, as being in a cocoon.
When I emerge, what life experiences are waiting for me to discover, that I have been unable for years to do. We will all be beautiful butterflies ready to spread our wings.
I have such a NEW level of wellness in the past 9 weeks with the MP, that I am ecstatic. My muscle and joint pain are doable. My Asthma, MCS, Brain Fog etc, much improved.
I am in total seclusion, and not getting the light "collapse" feeling. I feel much stronger as well. When the house was still too bright, I had trouble with the strength in my arms. I also wear my dark Noirs to view TV. I didn't realize how bad that had an effect on me. I will get a nurse to come to the house for future blood work. My family now SEES my need for darkness, and has accepted this, after watching how ill I become.
I had such an easier time this year with the loss of power. last year, the gas smell of everyones generator, made the MCS crazy. I must say, THANK YOU!
I have been sleeping only 10/11 hours. I have not felt the extreme tired feeling since I finally put up the room darkening shades. I have not had the need to take the white/green tea supplements. So, after being on 75mino. for 3 weeks, I have moved up to 100mg, feeling strong enough for the next level. I was able to sleep almost flat the other night, for the 1st time in four years. I bought an adjustable bed 2 years ago, as I was unable to sleep unless 3/4 upright.
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LORI: C.Lyme, MCS, IC, Asthma, Reflux, U.Colitis, Osteoporosis, Hypothyroid:
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Aussie Barb
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Posted: Sun Oct 30th, 2005 18:33 |
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 Chris wrote: IBS
I'd convinced myself that I was less sun-sensitive, but I was wrong. I probably have just gotten good at sun avoidance. I didn't take as much care to avoid going by sunny windows at work today, and paid the price tonight.
I survived two days back at work. Tuesday night I had a good sun flare, and didn't sleep well at all. Today, I cut the work day short to avoid driving home while feeling under the weather. The skin-crawlies are out and about, so I do expect things to get worse tonight. Forgot the abx this morning, so just took them at 3:30PM.
I think I can get away with just two days a week actually driving to work, but maybe can arrange for just one. Any more than two, and progress will definitely be slowed.
One person did note that not only is color back in my cheeks, but my hair seems darker. He noted that my eyebrows had been almost all white the last time we'd met, and now they were mostly red again. No dye, I swear!
Paying the price for too much sun continued over night. Could not sleep, Irritable Bowel Syndrome symptoms are back, including bloody diarrhea ...
So, I get a little better, do another brief errand outdoors, and the IBS gets nasty again. That light exposure is part of my IBS troubles had a hard time sinking in. I believe today.
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Chris: sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase 3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Posted: Mon Oct 31st, 2005 03:52 |
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A vacation in Hawaii almost killed me
Meg wrote:
...you cannot evaluate the effects of sun/lights on your disease process and symptoms until you have diligently avoided sun/lights for several weeks. Then when you expose your self to sun/lights again, you will be able to say if there is any effect
I have to second this. I had to learn the hard way. LOL A vacation in Hawaii almost killed me. I am now a believer. SUN IS BAD FOR US UNTIL WE RECOVER.
Paula - darker and wiser
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Aussie Barb
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Posted: Tue Nov 1st, 2005 19:35 |
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Mickey wrote: restarting MP... For whatever reason I felt the need to test the summer one last time and I failed miserably.
Well the brain MRI came back clean as I expected it would. The night seizures ended when I started staying indoors during the daylight hours and wearing the Bolle 100’s at all times. I ordered the 2% Noirs this morning although I plan on staying indoors this time around during all daylight hours. I have been tracking everyone’s progress over that last 8 months with a great deal of envy. I know now that I should have stayed the course but I freaked out a little and got bullheaded. I’m still here so I guess it is still not to late. I have had no heart irregularities in the eight months since I first attempted MP. I did not realize it at the time but I was one of those people that was blaming the Benicar for the heart herx instead of the disease. The inability to sleep also keeps me constantly second guessing myself.
For whatever reason I felt the need to test the summer one last time and I failed miserably.
My 1,25 d has been slowly climbing even though I quit all ingested vitamin D back in Dec 2004. I decided to shelve everything I had learned from this site and resume golfing this summer. My levels of 1,25 d climbed high enough to induce night seizures that lasted for 3 weeks. I normally seize a little at night since the Sarc got worse but nothing like this. They were severe enough that my wife was fearful that I may have a brain lesion or tumor. I had an MRI of the brain done but it came back clean at this time. The seizures ended when I put the Golf clubs away and stayed in a darkened house for several days with my Bolle 100 sunglasses on at all times. This info was provided by this website. It truly is one of those play now pay later things. No one wants to believe the Sun thing. I know I didn't. I tested it many times because I didn't want to believe it was killing me and I paid dearly in health and Insurance CoPays. The MRI was 1000.00 out of pocket. Thats one expensive round of Golf!
I have had 30 years to research Sarcoidosis and I can tell you that you would be hard pressed to find anyone that knows more about this disease than Dr. Marshall and his staff. You can trust these people.
A little play time in the sun is not an option. (PS) Could you loan me about 1000.00 in case I get a Golf Jones in the spring?
ADD Nov 05: Slept fairly good last night. I slept on a wedge to alleviate some of neck problems that flared on the previous night. I think I slept a full 6 1/2hrs with less frag than pre-Benicar I have not experienced any of the heart irregularities that I did on the first two attempts at Benicar up to this point. On my first attempt at Q8h and my second attempt at Q6h these problems were evident by day 4. Mental clarity is improving on the days that I do sleep and even on the rocky days I feel that I am functioning better than pre-Benicar.
Of course you already know this but it is exactly as you have stated so many times. By strictly avoiding all daylight and Vit D and wearing the proper eye protection (always) it makes this part of the adventure so much easier to endure. I checked my daily journals for those prior attempts and I had noted that I ventured out on at least 3 occasions without proper cover. This of course caused me a great deal of unnecessary discomfort that could have been avoided had I simply followed the Phase 1 guide lines.
Good Day and good luck Mickey
Mickey: SarcDx1977 Lung, Lymph, Neuro/EBV/NoPred (PLMD, Remeron, Diazepam)
(Curr Not On MP) (Tried Ben 2X) Heart Herx Mental Fog, Swollen Lymphs, twitchs
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Aussie Barb
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Posted: Wed Nov 2nd, 2005 18:16 |
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| Donna wrote: The most important thing you can do for your children, your husband and yourself is to get well. The only cure for Sarcoidosis is the Marshall Protocol and as Dr. Marshall once told a patient concerned about avoiding the sun..."right now, it's the only game in town.".
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Posted: Thu Nov 10th, 2005 02:49 |
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From emcguffie:
(filelink)
Just my opinion, but I bet it's to do with daylight exposure. I have recently started the MP, and have only just now realized that most of my discomfort, which has included pounding heart and shortness of breath, is connected to too much light exposure. I seem to need real darkness, period. Well, no, at night I feel better, even if I don't wear my glasses. But during the day, there seems to be no place dark enough.
Honestly.
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Posted: Thu Dec 1st, 2005 06:43 |
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Anxiety
(filelink)
One interesting development is my anxiety level is way down...it has been for a while...I feel calmer than I can ever remember. I believe that started tohappen with the light deprivation. Avoiding light is obviously very important and is doing some intresting things.
Aunt Diana
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Aussie Barb
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Posted: Tue Jan 17th, 2006 23:22 |
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 paulalbert wrote: I started wearing my shades 100% of the time at work and behold, my insomnia went away!
Especially early on, I got really confused about what the appropriate amount of light is. What really threw me for a loop was how I seemed not to be noticably affected by my cubicle environment, but then I started wearing my shades 100% of the time at work and behold, my insomnia went away! So, I was sensitive, but not in a way that was immediately perceptible. It made me think twice about going with my gut when it came to light sensitivity.
So what's the right amount? This is my understanding... in the early going: as little as you can comfortably tolerate. Later on, I think the consensus is that it's OK to increase the light you're exposed to a bit, so long as you're certain you're still making progress.
Paul
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Diag CFS June03; sympt since Sept02; exercise intol, food intol, sleep problems/ 1,25D:27, 25D:26 July04; 1,25D:43, 25D:6 June05; 1,25D:17, 25D:8 Aug05;/MP: July04/ Phase 3, Pet project:MP Gallery
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Aussie Barb
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Posted: Sun Jan 29th, 2006 23:17 |
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jrfoutin wrote:
Just thought I'd report a little in-between incident from yesterday. Pre MP, we used to take my widowed father-in-law out to lunch frequently and I had been feeling quite well so thought it would be OK to do it again if I prepared. It was very cloudy/overcast outside, I covered up well, used K-cream liberally, wore my darkest NoIRs the entire time (inside and out), and gloves except while eating (but I had put Kcream on to plan ahead). We sat in a darker area of an already not-so-bright restaurant. Picked food items that were not known to be problematic with MP and had a good visit.
However.... I noticed I was feeling a bit edgy and anxious after we dropped grandfather at home. Sound was bothering me, too. We had only been out about 2 hours total time, and I thought I had prepared well. My husb. wanted to run a few errands on the way home but I insisted we just head straight home after trying one quick stop for a first of several planned errands. No good.
I spent the rest of the afternoon crashed dead asleep. Woke only for a little while in the evening and slept all night solid, and after 6am Benicar slept in again, and then after getting up for only a little while went back to sleep again this morning.
My husb. hasn't quite been able to grasp the whole concept of why I have been so hesitant to venture into the day up until now. I explained that maybe I would just try again in 6 or so months, maybe, and I printed husb. out Dr. Marshall's quote [with edits] afterward so he would understand what he just witnessed.
re: light avoidance>>
Dr Marshall wrote: "The short-term consequences of [failing to provide adequate light] 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, brainfog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychosis."
I didn't have this kind of problem with PhI (long drive in car) or ModPhII (some shopping), but even an overcast day with darkest NoIRs and full coverage can be a problem with even a little Ph 2 abx! I'm back in the cave and feeling OK now.
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Aussie Barb
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Posted: Sat Mar 4th, 2006 05:03 |
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Sedona wrote:
I had to take my car to get serviced. the only way to get there is to drive east which is smack into the sun. I covered up with a black hooded jacket and wore black leather gloves. Wore my NoIR's but some of My face was still exposed. I took the benicar 6am. but the place opened at 7:30am. Thank dealership is on a mountain that covers the sun.
Later that morning my mucuos production increased tremendously but no blood. I developled a soar throat from all of the coughing. I got really tired and my head started pounding so I laid down. I slept three hours then later four hours more; I was exhausted. I was exposed to 10 mintues of sun at the traffic light and that was enough to set off a painful day.
I can't believe how serious avoiding sun exposure is. Unbelievable!
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Sedona: Inflam Disease|Neural/Lung Sarc diag via biopsy 09/96|off Mtrex 05/04|off Pred 08/05|off Silver Protein 400ppm 11/05|Cut D:02/14/06| Beg:MPh1 Thera Prob 02/19/06; 1,25D=60pg/ml:25D=27ng/ml Benicar 40mg q6h
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Aussie Barb
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Posted: Sun Mar 12th, 2006 00:43 |
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 alayne wrote:
Alayne’s testament to how well K-cream works and the necessity of taking additional Benicar BEFORE heading into daylight, not just afterwards.
I had to go to the post office and it’s no longer dark until after 6. At the last minute, I remembered that my post office closes at 5, not 5:30, so I hurriedly got ready and shot out the door with my packages at 4:45. Wore a hat, my 2%’s, gloves, heavy coat, etc. – BUT, didn’t put on K-cream for the first time. Until now, I’ve not gone out in daylight except for dr’s appointments and the one time I worked. I’ve always worn K-cream.
At least it was cloudy. Drive took 14 minutes, stood in line for 10 min next to some big windows (turned back to them), and drive home took 20 min. All that was exposed was the lower part of my face, yet, I already started to feel the exposure effects on the way home. In my chest. My chest began to feel very heavy and tight, heart rate went up, sharp pain set in. By the time I got home, I was pretty amazed at how quickly the symptoms were increasing in strength – scarily so. They also felt different from any herxing I’ve had. (I’ve read that folks with cardiac involvement must be very careful of 1,25-D surges, and this was quite adequate as proof.)
I immediately took a crushed Benicar with very warm water and for the first time on the MP, distinctly felt its palliative effect. I take it consistently, but until now, my symptoms have never been noticeably relieved by additional Beni, although I do increase it to Q4H on daytime trips. Nor have I felt much, if any difference, when taking it, as many others here do. But this palliative effect was very obvious. The chest pain, tightness, and rapid beats started easing with 10 minutes and were gone within 1/2 hour.
And here I thought I react more strongly to fluorescent lighting than sunlight. So not true without K-cream. I’ll take the buzzing head and burning eyes of fluorescents exposure any day over such increased cardiac symptoms.
Everything was fine for rest of evening, with the former mild and transient herxing resumed.
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CFIDS/FM 6/05:25D-34, 1,25D-69 12/05:25D-22 1,25D-44 Sick 6-11 mos/yr for 20+yrs. Sleep dysf (Xyrem), Neuro probs, Pos for EBV, CMV, C Pneu, Myco Pneu. Body totally fell apart 2005. NoIRs, 9/28-Avoid Sun/D,11/17-Beni 20mg crush Q5.25H, 12/02-Mino Q72H
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Posted: Mon Apr 10th, 2006 22:42 |
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Debbie y wrote:
I am back from my "singing" trip. This was my 1st trip away managing on my own with extreme light exposure.
Results: I did marvelous.
meds: I took my 50mg of Mino on a Wed and no more antibx until Sun. Then I started back on 25 and will go up to 50 tomorrow if no herx problems. I stay covered AMAP and only increased my benicar and did not need to take extra mino.
I have found people to be very kind and considerate. And I just used common sense.
Light: In a room exposed to the river, I sat as far away as possible with my back to the window. Kept on hat and glasses. I sat in the seat closest to the bus door so I could be first off to go inside. And, I kept my glasses on until the last moment I was called to be on stage. And, put them on as soon as I exited the stage. Kept the curtains in hotel closed and the other ladies (there were 4 of us in a spacious area), only turned on minimal lamps for me. And, faithfully used my K cream.
So, you can survive outside when necessary. Kept benicar and mino on hand at all times and avoided vit D foods. The best thing about this trip other than having no herx was the tremendous energy I had the entire time and I felt really good. I am happy to continue on my program. I hope this will encourage new people and let them know that if they follow the program and work it right, most people will get right through it.
Onward we go,
debbie y
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Ph1=2/2/06 SARC lungs,skin,3/04, D.M.1 -insulin pump, celiac sprue, IgA deficient, thyroid, MVP, 2/06 25D, less than 7, 1,25-29, ACE still high. Wearing NOIRS, Beni 40mg q8h mino 50mg qod
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Wed May 3rd, 2006 19:55 |
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Dogster wrote:
I find the light factor almost imponderable. Wouldnt believe it if I didnt know better.
I had to do some unavoidable outside property maintenance recently, and got way too much light exposure. Got my full onset of symptoms(wont bore you with those) including insomnia. But it was the first time I had seen (or at least noticed) this direct correlation. THE CONFIRMATIONS ARE NICE!
Dogster
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Aussie Barb
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Posted: Fri May 5th, 2006 04:17 |
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ralph wrote:
My visit to the cardiologist yesterday afternoon was a real lesson in understanding the state of play for me. With Sydney having another sunny day I was chauffer driven at 4pm by my wife to the Cardio. I was covered well with my dark Noirs and plenty of K cream around my face and hands. This was my first outing in over a month.
I also took a 20mg Benicar around 3pm to alleviate possible symptom attack. I had forgotten how nice the world looked during the day. By the time I saw the Doc I was feeling a little nauseated but tolerable. By the time I got to the car and drove home slight heart palps, bodyache in particular my shoulders. As soon as I got home at 5pm I took my 40mg Ben. I felt by about 6pm my severity of symptoms began to reduce. At about 8pm I took another 20mg Ben to make sure I kept my flare under control. By the time I went to bed I felt ok and woke this morning normal.
As a rule I don't have intentions to go out during the day but, I think I can say the K Cream probably didn't do much for me. But I have stock of this stuff and will use it if I venture out again to get rid of it.
regards,
Ralph
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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