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pdejager
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Posted: Fri Aug 5th, 2005 09:35 |
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I've been avoiding sun/light as much as possible (clothing, K cream, no NoIRs yet - on order), and am already feeling better for it, but have had one episode, at work, where I had to be in sunlight for about 15 minutes, without K cream. About an hour later, I was hurting and brain-fogged a lot more than usual.
Is there a 'typical' time interval between exposure to sunlight and the onset of 'sun flare' symptoms?
I've surfed the site, but have not found an answer yet. Could fellow members, if you are able to reply, please tell me how soon after sun exposure your symptoms became worse?
All the best, Peter
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MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16, 21Aug06: 8. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul06. Supplements Se, Zn,Ca, Mg, probiotic, Vit C, Vit E
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Foundation Staff
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Posted: Fri Aug 5th, 2005 15:36 |
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Peter,
There is no typical length of time between excess sun exposure and a symptom flare. Some will feel the effects within an hour or two while others may not experience an increase in symptoms for a day or longer. Please see:
THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS
Best,
Meg
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shamutooth
Member in Phase 3
| Joined: | Sat Sep 25th, 2004 |
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Posted: Fri Aug 5th, 2005 22:54 |
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| I must be a lucky one. I never seem to get ANY symptoms after sun exposure.My eyes are sensitive to light, though, and I always wear my Bolle's and K-cream. Sam
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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;11/13/05 25D=10
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Foundation Staff
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Posted: Sat Aug 6th, 2005 04:13 |
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Sam,
If you eyes are sensitive to light, you have a symptom of sun exposure. Be sure you wear adequate sunglasses outside-2% NoIRs if your eyes are bothering you. Bolle 100s are only equivalent to 10% NoIRs and may not be enough protection.
Best,
Meg
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shamutooth
Member in Phase 3
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Posted: Sat Aug 6th, 2005 05:03 |
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| Thanks Meg, I do have the 2% Noirs,but I find them too dark. They really seem to slow down my reaction time when driving. The Bolle's do a nice job for me; I only get the sensitive eyes when I take them off. Sam
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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;11/13/05 25D=10
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DNStog
Moderator
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Posted: Sat Aug 6th, 2005 05:30 |
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Peter,
In March of 2004 and nine months before starting MP, my family and I made our yearly journey to San Francisco. We took a ferry across the S F Bay riding on the top deck enjoying the beautiful sunny day. After the 40 minute trip, I could barely stand up to disembark because of a sudden onset of weakness, shaking, and brainfog. My husband had to carry my small purse (he's a good sport), which had suddenly become very heavy and help me down the steps. It took me sitting in the shade about 20 minutes to recover enough to walk to a covered, air conditioned shelter. The hour rest inside helped somewhat but I ended up having to cut my sightseeing trip short and return to our hotel.  (Then I remembered a posting I had read on the internet of how Sarc patients should limit their sun exposure and vitamin D intake which was written by a very wise man...Dr. Trevor Marshall.)
So yes, some of us Sarc patients do have negative effects from sun exposure fairly quickly. I'm in Phase II and get the exhaustion and loss of strength as part of my herx symptoms which now come and go. Prior to MP, these symptoms were with me for hours on a daily basis.
Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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Joy
Member in Phase 2/3
| Joined: | Mon Aug 1st, 2005 |
| Location: | USA |
| Posts: | 250 |
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Posted: Sat Aug 6th, 2005 06:38 |
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Shamutooth,
Can I ask you a question unrelated to this topic? I notice in your signature you have MCS. Has being on the MP helped your MCS symptoms any?
As you can probably tell, I'm also an MCS sufferer, and just in the reading phase of all this so far. I'm wondering how and if it affects MCS. I certainly don't have much room for my symptoms to be worse, and until I can get safer housing, which I'm more comfortable staying in all day, don't think I want to go on the protocol. I'm actively looking, but it's a long process.
Thanks for sharing any info you have about how and if this protocol affects Multiple Chemical Sensitivity.
Joy
P.S. I also have CFS and FM and several other auto-immune conditions. But MCS is the most uncomfortable of them, by far.
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CFS, FM, MCS, RA, low thyroid.
Began Ph 1 9/06, Phase 2 1/07. Stopped abx 11/07; stopped Benicar 5/09. 25D: 32,17,5,4,4
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Foundation Staff
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Posted: Sat Aug 6th, 2005 07:18 |
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Joy,
Read MARSHALL PROTOCOL SUCCESS STORIES and look for BARNEY'S report/s about MCS. You'll be amazed.
Best,
Meg
Reminder: The topic of this thread is sun exposure and sun flare.
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Margo
Member in Phase 3
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Posted: Sat Aug 6th, 2005 19:21 |
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MCS stands for "multiple chemical sensitivity".
Margo
Reminder: The topic of this thread is sun exposure and sun flare.
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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pdejager
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Posted: Sun Aug 7th, 2005 04:13 |
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Thank you, Meg.
I apologise for asking a question that had already been answered in the post you asked me to read. I can only plead brain-fog...
Regards, Peter
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MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16, 21Aug06: 8. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul06. Supplements Se, Zn,Ca, Mg, probiotic, Vit C, Vit E
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pdejager
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Posted: Sun Aug 7th, 2005 04:16 |
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Thanks, Sam.
I guess I was hoping that, as my 1,25-D levels are nowhere near as high as some, I might be able to tolerate more sun/light. It sure doesn't look like it, though.
All the best, Peter
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MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16, 21Aug06: 8. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul06. Supplements Se, Zn,Ca, Mg, probiotic, Vit C, Vit E
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pdejager
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Posted: Sun Aug 7th, 2005 04:29 |
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Thanks for sharing your experiences, Donna.
It looks like both types of reactions to sunlight mentioned in the post Meg referred me to are what's happening for me.
A short period of sun exposure in the middle of sun/light avoidance makes my symptoms worse within an hour, but about 6 hours later I'm back to where I was before the sun exposure.
Long periods of sun/light exposure have a different effect. I recently had a one-week winter holiday in tropical Cairns. I felt pretty good until the last day, when fatigue set in. Three days later I was confined to bed for two days.
All the best, Peter
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MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16, 21Aug06: 8. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul06. Supplements Se, Zn,Ca, Mg, probiotic, Vit C, Vit E
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Julia
Member in Phase 3
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Posted: Mon Aug 8th, 2005 10:45 |
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Peter
Not only does reaction time vary, but also I'm finding that where you are on the MP makes a difference, and what meds you're taking. I'm convinced one particular Phase 3 antibiotic is making me light-sensitive again just as I was beginning to achieve something like normality!  Hmmm, shows it's working I suppose.
"There IS light at the end of the tunnel - quick, get your NoIRs!"
Julia
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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FeatherRiver
Member in Phase 2/3
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Posted: Mon Aug 8th, 2005 18:53 |
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That's really good information to know Julia, thanks for the heads up - it's nice to know what we may run into around the corner - or not!
Diana
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DianaF:CFS,Fibro,RA since childhood, Dysautonomia
VitD 22/33, 7-04,Started Ben.MP 5-04 Ben 40mg q6h + Mino 100mg q48h + Quer as needed, Phase II Started Jan 15, 05 Ben 40mg q4h stopped mino and Z temp 2/22/05
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sanjive
Member
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Posted: Mon Aug 8th, 2005 20:17 |
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Fellow Members,
At first, starting the MP presented a serious challenge for me being an avid gardener and frequent traveller to warmer, sunny climes; specifically the caribbean (familial connections there). For the most part, I have thought that I actually felt better in the sun. After reading the "Effects of Sun..." discussion, I realize what is responsible for the "good feeling."
Avoiding sunlight presents a major lifestyle change for me, but since I am committed to MP, I have been following the plan (NoIR's on order). As of late I have been paying particular attention to how I feel after being in the sun/bright lights...
Many of you say that you have photo sensitivity, and the symptoms range from inflammation, pain, brain fog, etc. What about the eyes? What happens when you are sensitive to the light? Has anyone had symptoms that involve the eyes?
Around the time I was diagnosed with sarc, I experienced iritis. There was also inflammation of my lacrimal ducts. When I notice a particular flare up in symptoms, my eyes start to swell up.
Of course I am worried about the worse-case scenario being the involvement of the optic nerve, but I am hoping that the MP will resolve any issues with the eyes, now that I have started.
any thoughts?
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Sarcoid DX 2002;insomnia;anxiety;chronic pain; multiple kidney stones and ureter stone 1cm + stent, 08-11/2005; NOIR's, 08/2005; bone marrow biopsy 10/2005 (sarcoid invasion; weaning off pred. 5/mg evey other day; cardiac arrythmias;
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Julia
Member in Phase 3
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Posted: Mon Aug 8th, 2005 23:19 |
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Sanjive
I had bad uveitis/iritis which led to my sarc diagnosis two years ago. One of the symptoms was certainly extreme sensitivity to light. I had four courses of steroid drops that only brought temporary relief. Minocycline started curing it pretty rapidly, even before I started Benicar, and now my eyes have been fine for a long time. I have one little floater left, just to remind me of what they were once like  .
If you do a site search you'll find lots of discussion of eye symptoms. I'm sure the moderators will point you to the most relevant ones.
Julia
"There IS light at the end of the tunnel - quick, get your NoIRs!"
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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pdejager
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Posted: Tue Aug 9th, 2005 11:43 |
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Thanks, Julia.
I'm just starting out, but even just with avoiding light and using K-cream I'm finding that I'm feeling better, except for gritty eyes. I'm in the hands of the US Postal Service for delivery of my NoIRs, but they're usually pretty quick -- I should have them early next week.
All the best, Peter
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MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16, 21Aug06: 8. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul06. Supplements Se, Zn,Ca, Mg, probiotic, Vit C, Vit E
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slsmile2000
Member
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| Location: | Austin, Texas USA |
| Posts: | 27 |
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Posted: Tue Aug 9th, 2005 13:44 |
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Has anyone received the NoIR 401's and 407 spectrashields. I called and told them I was on the marshall protocol and that I wanted the 10 and 2% spectrasheilds. They arrived and I noticed the numbers were not any on the list for the MP. Can anyone tell me if I have the wrong glasses.
Thanks,
Sara
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* diag/pulm sarc,fatigue, inflammation of joints/muscle pain/stiff,Res/Pre-MP,Supps/B-complex,wearing NoIRs,avoiding D & sun/lights
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Aussie Barb
Research Team
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Posted: Tue Aug 9th, 2005 20:23 |
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Sara
the numbers on the frame seem to be the frame model numbers and the actual lens numbers are not on the glasses usually.. Some have discussed the feeling of unreliability about this before.. You may wish to call and let the Company know that you would like some confirmation that you have the correct glasses..
Barb ...
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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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kenc
Member in Phase 3
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Posted: Tue Aug 9th, 2005 20:53 |
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I get pain in my eyes when I expose myself to bright light. I've even had pain in my eyes when driving my car on a clear sunny day for more than 1/2 hour while wearing 2% NoIRs!
I didn't think I would be this sensitive to light since I have crohn's disease not sarcoidosis. I've also had iritis in my right eye about 5 times in the past before doing the MP. The pain I get now is in both eyes.
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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