The Marshall Protocol Study Site > ABOUT THE MARSHALL PROTOCOL > Essential Information About the MP (Required Reading) > Testimonials for the Need to Avoid Light
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The Marshall Protocol Study Site > ABOUT THE MARSHALL PROTOCOL > Essential Information About the MP (Required Reading) > Testimonials for the Need to Avoid Light |
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Aussie Barb Research Team 
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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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Aussie Barb Research Team
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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! 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: 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 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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Aussie Barb Research Team
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Arlene wrote: Don't go into the light....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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Aussie Barb Research Team
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 GeorgeinRollaMO wrote: Reenie,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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Aussie Barb Research Team
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melinda wrote: Jan 10, DAY 124 of MPMelinda: 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 Research Team
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 Meg Mangin R.N. wrote:
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Aussie Barb Research Team
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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).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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Aussie Barb Research Team
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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."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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Foundation Staff . 
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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 Research Team
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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 3XdayKen: "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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Foundation Staff .
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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 Research Team
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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.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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Aussie Barb Research Team
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 Chris wrote: I found out two things yesterday.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 Research Team
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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.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 Research Team
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Dr Trevor Marshall wrote: Paula, |
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Aussie Barb Research Team
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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 Research Team
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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.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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Foundation Staff .
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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 Research Team
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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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Aussie Barb Research Team
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 Lottie, Board Staff wrote: Betsy, |
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Foundation Staff .
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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 Research Team
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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 ____________________ 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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Foundation Staff .
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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 Research Team
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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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Foundation Staff .
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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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Aussie Barb Research Team
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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....... ____________________ 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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Aussie Barb Research Team
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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. ____________________ LORI: C.Lyme, MCS, IC, Asthma, Reflux, U.Colitis, Osteoporosis, Hypothyroid: |
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Aussie Barb Research Team
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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. ____________________ 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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Foundation Staff .
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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 (filelink) |
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Aussie Barb Research Team
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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 Research Team
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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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Foundation Staff .
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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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Foundation Staff .
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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 Research Team
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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 ____________________ 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 Research Team
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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>> 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 Research Team
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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! ____________________ 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 Research Team
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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. ____________________ 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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Aussie Barb Research Team
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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  ____________________ 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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Aussie Barb Research Team
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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 Research Team
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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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katydid Member in Phase 2/3
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I found out yesterday just how fun light exposure is. I had to be out for longer than usual, and I forgot my hat! Even though I have long, dark hair that covers my neck and sides of my face, I think the hat really helps, even if only a ball cap. When I got home I had a much higher pulse, some muscle weakness, very slight anxiety, and major insomnia. Did finally sleep, (after extra Flexeril), but only for a few hours. Feel okay today, but not as good as before the exposure. Still feel a bit "antsy", as my mother used to say, and also have achey muscles. |
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Morris W. Milnes Member 
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I have also come to a conclusion. I am dangerously reactive to sunlight. when I cross that threshold the reaction is very damaging especially to my lungs. Now on the good side, Once the sun is below the horizon I can go out and enjoy the glowing sky with no detectable reaction. I went to a party the other day well covered on a heavily overcast day and spent a couple hours in a garage with the door open after having removed hat glove and glasses-no reaction. Today I went out well covered with K cream for about 10 min. each way taking my wife to her cataract surgery and I was exceedingly blue and short of breath. I didn't take my oxygen because of how good I had felt and how good my walk was the previous night. Fortunately they were very nice there and just plugged me into their in house Oxygen while I sat with Sharon. My fingernails remained blue for a long time and I felt really bad, but when they checked Sharons Oxygen saturation at 100% they checked mine and it was 97%. Strange. I did not feel well all day, but am better now although I still seem to need to do the oxygen. I have figured out that the last 4 times I have been out in bright sun, 2 of which were my drs. appointments, I have had this kind of bad reaction. I have come to a conclusion about my bad light exposure problems. I am so thoroughly covered that if it's cloudy or late I don't have a problem. If it's bright I do and when I have problems it's when I can feel the suns heat burning through my shirt. I had kind of been of the opinion that Dr. Marshall can't be right about IR creating D. I should have known that was a really bad thought. I'm looking into some of the long insulated underwear to wear under my clothes when I have to go out in bright sun. |
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lucindarose Health Professional 
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Avoiding Light and D: this site is a godsend to me: Hi I had severe hypercalcaemia at 3.66 mmol. Initial Vit D results were 25D=44 and 1,25D=129. Unfortunately for me, however, this was discovered due to persistant frank haematuria, which, following a renal ultrasound revealed bilateral nephrocalcinosis and markedly reduced renal function. Following lengthy investigations of virtually every body part, I was diagnosed with neurosarcoidosis, which looking at the Hypervitaminosis D symptoms, I have probably had for many, many years!! My thirst was incredible. I was drinking constantly throughout the day (and night) and passing vast quantities of very dilute urine which also led to a diagnosis of diabetes insipidus as there was thickening of the pituitary stalk and meninges on my MRI scan. I am not on the MP (yet!) as my current physicians will not entertain it. But it was through this site that I learned that I must avoid all dietry vitamin D and sunlight/bright lights. Thankfully due to following this advice (which my doctors never gave me and STILL insist that it is unneccesary!), my serum calcium has remained normal now for some time. I remain on 2.5mg/day Prednisolone but I am hoping to be off this soon. I asked my doc about water intake and whether it 'flushes' the calcium out of the body and he said that it does not. I was told, however, to increase my salt intake as this would help to get rid of it in the urine. I did follow this advice for a while but a) my BP is raised, b) I now have Stage 3 CKD and high salt is contraindicated and c) if you have nephrocalcinosis you shouldn't increase the calcium throughput in the kidney (if that makes sense?) as it makes the nephrocalcinosis worse. Anyway, do follow all the fantastic advice the moderators give - this site has been such a godsend to me and I'm sure many others. Best wishes Anna. |
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Aussie Barb Research Team
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VEZ wrote: I spent a week in LA for the holidays and the sun just about did me in. I was feeling so great here in NE Ohio with the overcast days and it took exactly 2 days to have severe neuro effects from the sun even though I wore many layers of zinc oxide and kept covered with a leather coat when in the car and wore my stongest Noirs. Only had two trips out doors in the car but the house was full of sun light which I tried to avoid as much as possible and also wore my blocker and Noirs 2%. My room was dark so that helped but I can tell you that sun caused some severe neuro symptoms.  On day 3 in LA I had what I will call a neuro break.....Everything went black for about 30min (I thought I had lost my eyesight) and I had my first panic attack. My HR was about 150 for about an hour and I couldn't put two words together correctly! I was pretty much useless the rest of the trip. I took more benicar out there than I thought possible, between 220-280mg per day just to survive. (BENICAR DID HELP ME THROUGH THIS) The flight home was dark which helped to start the calming of all that negative neuro activity. Today I feel exhausted and plan to lay low. |
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Aussie Barb Research Team
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Store Lights: heat.. Ames wrote: Two days ago I went shopping with my friend. We were in the make-up section looking for eyeshadow when my friend realized she couldn't find her sunglasses. Everyone in the make-up department started searching for them. My job was to sit on a chair and watch our bags! The lights were incredibly bright. I was wearing my medium pair on Noirs. However what started to bother me the most was the HEAT generated by the lights. I remember thinking to myself "I feel as if I am cooking in a giant oven." The sunglasses were finally found, but after an hour and a half long search. Yesterday morning I woke up feeling strange. I was on my computer reading an email when all of a sudden the room started to spin. It was spinning so fast I couldn't even focus on an object. I thought I might faint but didn't. The feeling did not pass. I fell into bed and was struck with intense waves of nausea. I stumbled to the toilet and tried to vomit but couldn't. I had to lie in bed for three hours straight, eyes closed, with the sensation that my head was spinning. I took 2 extra benicar...one normally, one sublingually. The benicar definitely helped...after a few hours I was able to get out of bed. I made oatmeal and was able to keep it down. The rest of the day I dosed benicar every 3 hrs and still felt terrible. My throat hurt. I had strange head and skull pain. I was very emotional and wanted to cry. The strange part was that my body felt as if it was on fire. I felt very feverish. I forced myself to take a cold shower which seemed to help. I kept an ice pack on my head for a while which also helped. Periodically I would get the shivers and small convulsions. Today I feel much better but still not my usual self. Clearly those lights REALLY did me in! I haven't had hyper-D sxs like this since the first week I started the MP. The strange part was that my sxs felt like a sun flare. This experience reminded me that I still have to be very careful about light exposure and that I am still very iight sensitive. It also reminded me that when I am in a situation where I find the lighting to be uncomfortable I should leave immediately. I should have waited in the car while my friend looked for her glasses. I have to put myself first! This will not happen again! Amy |
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Aussie Barb Research Team
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Patrickburke wrote: re heat Hi Amy, You are not alone with your heat sensitivity  . Since day 1 of the MP I noticed that anything hot would have a bad effect on me. Such things as halogen lights, ovens, radiators, hot showers, baths etc, even once a kettle would send me dizzy  . We have large overhead radiant heaters at work and walking under those was always a recipe for a dizzy spell. Obviously since I was under them the effect could not be caused by convecting hot air and so had to be caused by radiation (the IR  ) and as I was wearing noirs it had to be my skin reacting and as I was always covered up it had to be passing through my clothes also I have never been able to find a way to avoid this effect from IR .However, and this is where it gets good, today at work I was sat right between 2 radiators for many minutes and they had no effect on me (other that feeling quite nice) for the first time since being on the MP. So the effect is wearing off at last . |
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Aussie Barb Research Team 
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patrickburke Member in Phase 3  I am prompted to write in a little greater detail about how my suddenly decreased light sensitivity has affected me. It's good to read of other similar progress. I too am erring on the side of caution which is why I am keeping all my No 35 Noirs. As I have been wearing contact lenses since Christmas I have not used the fitovers anyway so I may as well give them away if anyone in the UK wants them. I have had no takers yet though. I used to get literally blinded by even a tiny flash of light especially fluorescents, now I don't get anything like that . I have noticed that if I have a long day in full daylight I do start to get some slight mental issues mainly jumbling my words up a little, consequently I am still avoiding as much light as I can when I can without interfering with my new lit up lifestyle . Eg my office at work is still blacked out from sunlight with only tungsten incandescent lighting. I still have my blinds and heavy curtains closed at home unless I am expecting a visitor. But I don't mind any of this at all. I can go wherever I want and do whatever I want whenever I want to . If my words get a little jumbled at the end of a long enjoyable day of that then so be it. It's easily tolerable. In the past I have been incapacitated and blinded for 30 mins or more by a flash of light through the side of my Noirs and brought to my knees, almost fainting, with dizziness if I wasn't wearing a strong enough pair. Take care all. October 07: Just for the record. I still cover up, I am still wary of daylight even though I can handle as much as I reasonably need to. I still wear a hat. My office is still boarded up and lit by tungsten even though fluorescents don't bother me any more. My PC monitors are still set to lowish light even though I don't feel the need. But I have not had to wear my Noirs once since the 23rd June 2007 . What a great day that was .Within the last few days I have noticed that I can recall some telephone numbers again, I lost this ability many years ago when the brain fog started setting in. June 2008 I had some Corning GlareCutter prescription lenses which for me were better with CRT's, and fluorescents than any Noir which I believe was due to better blue filtration. However, I never really tried them outside as I did not have faith in their ability to filter out the IR in daylight. But then I hardly ever went out in the daylight anyway so it wasn't much of an issue. Personally, remembering that I seemed at the time to have extreme light sensitivity, I could not tolerate even artificial light or heat (IR) on my skin and I had to ensure that whilst I was laid on my couch at night exhausted in the dark watching my dimmed down TV with my 10% Noirs I also had to ensure for example that I was wearing socks (and cover my hands) as I would feel the muscle twitching starting in my feet and then all the other light exposure sx's would follow. I wore 10% Noirs so that I could lower the brightness of the TV more and so lower my whole body light exposure while still being able to just see the TV. The same applies to computer monitors and lighting of course.........indoors at night 10% Noirs = lower light levels falling on your skin than if you are using 2%. Hang in there, I don't wear any eye protection at all now and often have to turn the lights up . But it took 26 months .Russ replies: Patrick, I also notice that covering up my skin helps even for exposure to non-natural light like the computer screen and flourescents in stores. Crazy. I know the sensitivity will drop eventually. That will be a day to celebrate. P Bear, did you find halogen lights to be worse than flourescents or both equally bad? The halogens were much worse for me. ~ P.B. 3rd July 2009: For those who are interested in my heatwave antics. I had 3 days on the roof in the sun in the heatwave at up to 32 C (90 F) ambient. After 2 days I woke with increased gut IP, but tolerable, I also had a coughing attack and coughed up some phlegm for around 5 minutes. After the third day I was very tired and went to bed early, slept like a log and woke up feeling fine .I noticed that by the third day I had seemingly acclimatised to the heat and was sweating less. I also noticed again that others were still suffering far more than me and were burning. I used no sun lotion and did not burn although my face felt slightly hot. Only last year when the IP hit my kidneys and I was at stage 4 "kidney disease" (lol) I noticed that sunlight exacerbated my kidney sxs, this year I felt no such effect. I did have a 10-15 minute episode of orthostatic hypotension on day 2 also. On days 1 and 2 I took precautionary extra benicar at q4h + some SL, day 3 I forgot about it lol and went to 6 hours. Please note that this is not an experience that I would like to repeat nor would I have tried it voluntarily I also always had the option of going off "sick" at zero notice should I have needed it as I was only 2 miles or a phone call from home. I was never in danger. But it happened and I am cautiously pleased with the outcome. It has taken a great weight off of my shoulders and has increased my social confidence .Never a dull moment on with the MP .Take care all. Edit. I also showered morning and night as (I have suspected this for some time) this can apparently wash away D metabolites from your skin before they have time to react or be absorbed via micro dialysis _____________________ Pat. Sarcoidosis/lungs dx 5/04; Ph1 May05; Ph2 Jun05; Ph3 Dec05; No ABX 2/08; No D tests; covered since 6/04; Noirs off 6/07; Min light avoidance| Pat's Story| |
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Foundation Staff .
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-I have been inside with my 10% noirs on and my blinds closed for about 32 hours now and already see a dramatic decrease in pain....stayed inside in the daytime for 3 days last week and pain improved. Had some commitments to fulfill but from now on I'll do errands at night and be more careful about time spent going back and forth to work. ~candi -Natural is to a minimum now. Have made more adjustments at work and at home. You were right! I was getting tired and weak because of light exposure. The last few days has been a big difference. ~Simon |
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Foundation Staff .
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Last night we ran our space heater, hoping to avoid turning up the central heat, but I didn't realize that it was a quartz heater which used IR for heat! After 30 minutes, I developed some serious photosensitivity, which has yet to resolve; although it is improving. Wow! What a lesson! ~VirginiaGal-Well I really have to thank you Meg. Over the past few days I've really been watching my sun exposure, covering up with thick clothing and wearing a beanie and socks etc, put zinc heavily on any exposed areas and closing curtains at all times around the house and also avoiding any outside contact when possible. I must say that I'm feeling so much better! I just feel relaxed, more clear and focused its great. Its got me thinking though since I havent really gone up to this level of light avoidance in all my treatment so far. I wonder how much of my symptoms, particulalry mental are due to light exposure instead of herx? Anyway, I guess all i can do is keep going, but I think if I continue this level of light avoidance, I think I will be able to handle the (the antbiotic) much easier. (originally I thought it was the (antibiotic) alone causing the angry and depressed phases i was having). ~Jimmy_jimjim -No appreciable light exposure since last update. With no appreciable exposure, symptoms have improved and are tolerable. This has been a real learning experience for her. But at least we know there is a direct link between increased exposure and all her weird movement symptoms. ~Mindy -Over all I'm feeling better. the more I protect myself from the sun and stay inside, the better I am. ~candi -Light exposure kept at a minimum, except for two times when I got more exposure than usual. It was interesting to note that following the light exposure, I became quite disoriented, couldn't think straight and felt as if I were having an emotional meltdown. Seems that my tolerance to light waxes and wanes and that I am now in a state of increased sensitivity. Extra Benicar eased up the neuro symptoms, especially when I just let it dissolve under my tongue. ~Adrianne -Feeling very much like my old tortured self (pre-MP). That's two weeks in a row of extra light exposure and I really feel it! ~janicew -For some reason many people don't seem to read or understand that you can get as much light exposure in a very cloudy and rainy day as you can on a bright and sunny day. The uv rays and infrared come through in any daylight at all.....Dr. Marshall says somewhere that his "eureka" moment came one day when he was in a scandinavian country where there was little light yet he still felt as bad as he had in sunnier climates. So dark and rainy days make little difference in the light exposure you recieve....same goes for sitting in shade. Reflective light bounces off surfaces and there you are! Higher 1,25-D. I find I am feeling so much better now that I have simply resolved myself to live indoors during daylight hours. I'm feeling so much better and my symptoms are so much more tolerable that it takes a team of wild horses to get me outside in the daylight. (I am an artist by the way.....and no one loves light more than artists.) I figure it's a temporary situation, and I can tolerate anything as long as the end is in sight, and that it will bring me my health back. I know it's hard....but it is worth it. ~Aunt Diana -Resting has proved itself along with staying out of daylight to minimize my herx. I have still managed to do some chores around the house with less distress. So seem to be back on a more even keel. Hmmmm, do I hear someone whispering in my ear..."listen to your Moderators??!" ~Deb Grabetz -I used to go outside during the day with protections until a month ago when I experienced substancial difference between sun flares and immunpathologies. In fact, the later sx--mainly of the neurological kind--, diminishes considerably if I stay at home with NoIRs until darkening, comparing with not staying at home till that time. ~CarlJB |
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Foundation Staff .
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-I used to feel quite good in the sun, but over the years I felt the need to cover up more and more because I found that even though in the moment the sun made me feel good, during the day or two following exposure I would feel debilitated. I started to wear the darkest photo-gray sunglasses I could get when I was 18 because due to eye strain and headaches I could not tolerate bright sunlight. At the same time at work, I would always need more light than anyone else to be able to see well enough to do my job safely. Upon starting the MP I became terribly light sensitive and had to use my darkest pair of NOIRS (a special brand of sunglasses) to watch TV or use the computer. I ended up having to purchase dark glacier glasses and had to wear the darkest NOIRs over them in order to go outside in daylight or to drive. It seemed as if I could see like an owl in very low light conditions - this after a lifetime of relative night blindness. I also found I was very sensitive to heat radiation, even if I was well covered up. If out too long, the heat would knock me down and the following day many of my symptoms were exacerbated. My light and heat sensitivity have slowly improved and I can now drive on cloudy days with NOIR equivalent sunglasses that block less light, and if sunny, I can usually get by with less protection as well. I no longer find the need to wear a face mask in order to block sun, but I stick to a big hat and gloves with long sleeves and long pants. During the first year, I was amazed by how just a few minutes of exposure to halogen lights at a store like Lowe’s would make me feel ready to pass out - it was such a profound reaction to bright lights, even with the strongest NOIRs on. I was usually able to control my level of immunopatholgy by carefully monitoring the rate at which I increased my antibiotics. I was also very strict about controlling sun and heat exposure and made sure to rest sufficiently. ~P.Bear, RN See P.Bear's interview -Increase in trigeminal neuralgia type headaches however 3-4 when they happen. Seems a direct result of accidental light exposure tho'. A couple of times I've gone outside without my hat. ~Ceredwym - My husband put up more shades in my house over Christmas so I have been feeling better. ~candi-Ever since I stepped up my sun avoidance I have been feeling so much more stable, pretty much all my symptoms have stablized and feeling better in multiple respects. Particularly mentally I feel much more relaxed and can sort of deal with things better. I still feel very cloudy and depressed but not the overwhelming waves of sadness, hopelessness etc I used to get. Also my chemical sensitivities are so much better, I can now pretty much correlate a rise in these certain symptoms with times that I have had too much sun. ~Jimmy_jimjim -Have discovered that my BP goes up and down directly related to the amount of light I'm getting! Surprise, surprise! Will be wearing my NoIRs while driving at night, too. ~Cowgirl -One day I had a 1.5 hour trip in car (all MP covered) & ended up with a nasty headache behind my eyes, which stopped when I returned home within 10 minutes. ~Pundun -went outside to hang washing on the line i didnt have Noir's on and i think this is what triggered the headaches. ~Sophie -Social - Noirs but forgot hat - Big mistake - Bad IP for a few days after outing. ~DianeW -Also had too much sun exposure during outing while visiting construction site for an hour +. (Very covered, but very bright, hot day) Took extra Beni. Sun exposure caused fatigue, sweats, joint pain, and brain fog. ~FortWorthKaren |
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Foundation Staff .
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-In retrospect, I'm realizing that a lot of my anger, irritability, weepiness, and depression - although missing my recently departed pet, are probably the result of getting too much light in my eyes over the course of going to vet visits, sunny exam rooms, etc. I also was wearing my Noirs less during that time. My photosensitivity has been much less and I kept trying to take off my glasses to see, only to realize I was NOT wearing glasses, so figured it was time to go without them in my low luxe home and office. After not wearing them for 4 hours at work yesterday, I came home and felt so angry, weepy and jumping out of my skin whole body pressure, it was very clear to me it had come from the light in my eyes from that morning, because I had felt fine when I went into work, and enjoyed my patients. I don't have this reaction in the sun fully covered and with 2% Noirs, or with tv or the computer. Also it felt like someone had come into my house and replaced all the lightbulbs with a higher watt. So...once again will wear the Noirs inside my office and home for awhile longer. ~drvikki -After I got MORE serious about light avoidance, within about 8 days the BP went to NORMAL. (I understand it was MORE than JUST the "less light" that made it happen, but that really seemed to tip the scales.) Three weeks ago it was 298/130 after over exposure to light for 5 days. Today it was 119/83! I've taken nothing FOR blood pressure since starting the MP. My family, my doctor, and I are plain flabbergasted! You all SAID it would come down. Whew! This is SUCH a RELIEF! (I do know it may wellrollercoaster again, but still!) ~Cowgirl-Just a note about my symptoms and light exposure. I've been feeling so fatigued the past few weeks I decided to go back into "troglodite mode"  Been staying inside most of the day, covering double-layered when going out and using my NoIR fitovers again (had practically abandoned them except for long car trips, using my tinted Rx glasses instead, which let light in on the sides & underneath). Also, I realised that I was getting too much light indoors because this new house has no curtains. It is shady, but the incident light must have been getting to me. So - for the past 4 days, since avoiding light diligently I FEEL SO MUCH BETTER! Yeah, yeah, I know, everybody TOLD ME SO... *looks sheepish* ... but it hadn't provoked any symptoms for months... until this new abx combo. PS - I'm having curtains made tomorrow!  Claudia-Interestingly, staying out of the lights has made me much calmer. I can talk now and think a bit more clearly. I had to return something to a store and was in there for 15 minutes or so and noticed just how uncomfortable, irritable, brain wouldn't function, confused, etc. As upsetting as this is, it really shows me how lights effected my brain and emotional fuctions. ~juliemomof3 -Would like to note that I haven't taken lexapro for 3 weeks and am doing great. Here is what I am finding out. Staying out of lights (all sun and bright lights) in making an amazing difference in my anxiety, ability to communicate and happiness. The way I know this is when I have to go into a store (groceries or church) there is this dramatic response that is only calmed down by laying in a dark room and possibly a nap. Though I can trace light being a factor since 1995 when I had my first ever migraine, the horrible pain went silent in 2000. I had a very challenging, demanding job where I wrote memos requesting something other than florescent lights. I knew they bothered me, but didn't know why. Then the migraines stopped, but I was driving to an edit session and suddenly didin't know where I was or why I was driving. That was the beginning of countless psychiatrist visits and drugs that never, ever helped me. I thought it was anxiety. Confusion set it and though there were months where I felt like my old self, eventually in 2003 I felt sick, physically and mentally (brain fog, sadness and anxiety, pain and all the other physical symptoms mentioned here on this site) all the time. It was lights. Cause - bacteria. ~juliemomof3 After Ryan's game (the sun and watching him get injured) sent me into the roughest time yet on MP. My intent was to sit in shade where I was okay before, but this time there was no shade. I will not go to daytime game again. The reaction was extreme. I couldn't even think enough to go on the site to report almost suicidal, can't go on thoughts. I haven't gotten that bad before. The head and back pain was extreme and I upped benicar and stayed completely out of lights. Not fully recovered yet. ~juliemomof3 -Find that decreased sunlight really decreased irritability and paranoia (or, those people after me just went away!) ~JohnP -The sun exposure was big, I had to go out three consecutive days, although well covered, noirs, zinc, hat etc, but it was too much and I had a sun flare, it was intense, nausea, rheumatic pain, GI symptomps, strong stomach cramps, diarreah, bodypain, eyepain restleness, headache, ulcered tongue, flulike state. It felt like punishment of hell.... ~marion villaLast edited on Sat Oct 4th, 2008 20:17 by Foundation Staff |
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Foundation Staff .
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-what sunscreen where u using and did it help? ~Schesche -You ask a tricky question but the answer is simple......I don't use any. I tried K cream and zinc but they were of no real use to me. I am afraid that I was one of those very light sensitive MPers like you. I was light sensitive for around 2 years and nothing really helped me except the night . Not even when I laminated my windows with aluminium and then backed them up with concave reflective aluminium venetian blinds and heavy duty lined dark velvet curtains as well. I had the inside of my house at 0.1lux in full sun.....it was my sanctuary!!! but I could still feel the heat of the sun. I am pretty sure that if I could have afforded to have my house air conditioned that would have been a great help and reduced the temperature of the walls that I can only assume were radiating IR during those hot summer days. At least you can be sure the MP is working for you with your high degree of light sensitivity and rest assured that one day it will pass. ~patrickburke-Start by being very strict. Give it a couple of months without doing anything but the MP. Then you can start feeling your way toward allowing some activities back in to see where you can get away with it. Once you start, a "healthy" lifestyle is: lots of rest, the right foods, and staying out of the sun. Out of the sun means being inside, no windows. Being outside, even covered, will give you problems if you push it. Noirs on a sunny day can be marginal at best, as you'll discover soon enough. Neural effects = No Fun. I've watched any number of people in denial about light, and then watched them crash and burn. Just accept the restrictions and don't learn the hard way. It's very demoralizing and not a good start. Two years from now, you'll thank me for advising you to save your strength. You'll need it all down the road. ~Knochen -Since my kids are out of school and out of sports I can tell that it is helping my recovery by dealing with less sun. ~jarjar - I stayed home most of the last week. Almost there was no pain at all during that time. In Wednesday, I went out covered up. But, I stayed an a hour in an office that was strongly exposed to sun radiation (not direct light) without wearing sunglasses. The effect was unbelievable. Just three hours later, I felt extreme depression and fatigue which I fought with lots of Benicar (every 2 to 3 hours for the next 9 hours). Results were good. At the night I was able to sleep well. What amazes me is the effect of sunlight on me. If stay at home, symptoms would be moderate. despite the increase on antibiotic (I added Mino from 50 MG to 100 MG with no noticeable effect). But sun light has significant effect on me. ~Salam Jul08 |
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