 |
| Author | Post |
|---|
P.Bear R.N.
Inactive Staff
| Joined: | Fri Dec 3rd, 2004 |
| Location: | USA |
| Posts: | 2125 |
| Status: |
Offline
|
|
Posted: Tue Sep 6th, 2005 04:22 |
|
| I have reviewed many people's progress posts and noted that some never mention eyes hurting when exposed to bright lights. My eyes were strongly hit right away on benicar, and I wondered if people are forgetting to mention it or if only some of us are getting such a profound effect. I am less photosensitive now, but would like to know if a lack of photosensitvity in someone doing a theraputic probe would be revealing? Anyone out there who's eyes never hurt? thanks for any imput, P.B. Last edited on Tue Sep 6th, 2005 04:26 by P.Bear R.N.
|
kathleen
Member in Phase 2/3
|
Posted: Tue Sep 6th, 2005 04:41 |
|
Hi,
My eyes don't hurt if exposed to strong light. But if it's sun or florescent I'll faint pretty quickly. Being very close to fainting alot of the time is my most dramatic response to being on the MP.
I can't see very well with the low levels of light that are necessary for the MP. I don't think that more incandescent light will make me faint, but I stick to the 30 lux limit.
I think that many of us with Lyme/CFS have a different eyeball reaction to light than most people with sarcoidosis.
KathleenLast edited on Tue Sep 6th, 2005 04:42 by kathleen
____________________
CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
|
Nightshade
Member in Phase 2
| Joined: | Mon Jul 4th, 2005 |
| Location: | Berlin, Germany |
| Posts: | 82 |
| Status: |
Offline
|
|
Posted: Tue Sep 6th, 2005 11:11 |
|
Hello P. Bear,
not everyone feels the light sensitivity, but everyone suffers from the increased VitD the days after exposure.
My light sensitivity is the strongest symptom and the first I got from the disease, I do not take benicar yet. For me sunlight, even reflected, feels like a hit by a laser weapon. The light sensitivity I heard from lymies pre- or not-MP (in this forum and the german groups) ranges from none to worse than me, it is less specific than even other lyme symptoms.
Nightshade
____________________
MP: Age 33 Borreliosis 83? dx 02, Brain fog, tiredness, depress, arthrit knees hands, Headaches. started Benicar 11.11.05 Mino 27.11.
25D=20; 1,25D=27 NOIRs avoid Light/VitD
|
paulalbert
Board Staff
| Joined: | Fri Jul 16th, 2004 |
| Location: | USA |
| Posts: | 855 |
| Status: |
Offline
|
|
Posted: Tue Sep 6th, 2005 19:32 |
|
I've been on the MP for 14 months and it wasn't until a few days ago that I was really truly photosensitive for any extended period of time (more than 12 hours). It has been nearly three days now and I am still overwhelmed by light.
Paul
____________________
Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
|
Dr Trevor Marshall
Research Team
|
Posted: Tue Sep 6th, 2005 22:58 |
|
The photosensitivity is not due to the medications, it is part of the healing process.
If you see photos of me from the period 1987-1999, a decade before the MP, when I was taking no medication whatsoever, you will see me with those 98% Zeiss glasses which I had to wear everywhere.
Once you start cutting the Vit D so that your immune system can start functioning properly again, the photosensitivity sets in, and it will stay for 6-24 months, gradually decreasing as you progress on the MP.
As you recover you will get to the point where you can't see anything through those dark glasses any more 
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Wed Sep 7th, 2005 02:00 |
|
P.Bear,
Photosensitivity may be more pronounced in those who have intracellular bacteria within their eyes. With a history of uveitis, it wasn't surprising that my mild photosensitivity magnified when I eliminated Vitamin D from my diet. It has gradually decreased in the past two years and I feel comfortable in most lighting situations without my sunglasses. But I still wear my NoIRs when exposed to bright lights or natural light to prevent the production of 1,25-D by the renin-angiotensin system within the eyes.
Best,
Meg
|
ShrnHml
Member in Phase 2/3
|
Posted: Wed Sep 7th, 2005 06:18 |
|
Hi, P. Bear............interesting topic.
I have wondered about my own apparent non-sensitivity to light. I'm following all precautions except for TV and computer....which I cannot see with NoIRs. On those I have turned the Brightness bar way down, but whenever I need to see a picture on my computer, I have to turn up the brightness.
I guess the sensitivity is something I can "anticipate" in the future.
Sharon
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
|
cinket
Health Professional
| Joined: | Wed Jun 1st, 2005 |
| Location: | NY |
| Posts: | 36 |
| Status: |
Offline
|
|
Posted: Thu Sep 8th, 2005 15:46 |
|
Hello,
I have a question that's been bugging me which may have no good answer but here goes:
How does one distinguish between photosensitiviy (of the eye) that occurs because of the Th1 disease and healing on the MP vs. photosensitiviy that would simply occur in healthy folks if they were always in the dark or wearing sunglasses?
Could wearing sunglasses/cave-dwelling all the time play some role by itself in the sun sensitiviy of the eye that MP patients experience?
I'm just thinking of the photosensitiviy that I experience as a "healthy" person when being in the dark and then adjusting to light. I guess the answer may be that my sensitivity wanes quickly while someone on the MP would not adjust quickly and would then experience the other sun-flare symptoms caused by elevated 1,25D?
____________________
Husband w/Sarc DX:2001 + biopsy lymph nodes,lungs. Symptoms now:fatigue,abd./flank/chest pain,joint pain. 8/9/05 1,25 D=74/25D=27. 8/29/05 avoid D/foods, sun, Bolle's/Hidalgo's,K Cream. Start MP 11/10/05 Beni 40mg q6.
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Thu Sep 8th, 2005 21:26 |
|
Cinket,
You've answered your own question very nicely.
I'm just thinking of the photosensitiviy that I experience as a "healthy" person when being in the dark and then adjusting to light. I guess the answer may be that my sensitivity wanes quickly while someone on the MP would not adjust quickly and would then experience the other sun-flare symptoms caused by elevated 1,25D?
Best,
Meg
|
jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
| Status: |
Offline
|
|
Posted: Fri Sep 9th, 2005 00:31 |
|
Pre dx Sarc, I just could not do sunshine easily without sunglasses. Once, years ago, when I forgot to wear sunglasses I was in so much pain I got my husband to hand over his!
One MP convincer for me was mention of sensitive eyes. I got and wore NoIRs months before I was able to start Benicar. They felt so good even then. Doc had still noted inflamed eyes hours before I got prescription for Benicar.
I look forward to when my eyes are ready to graduate because I won't be so keen on wearing NoIRs. My eyes will tell me when it is time to come out of the dark.
____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
|
livitup
Member in Phase 3
|
Posted: Sun Sep 11th, 2005 20:39 |
|
P. Bear,
I've always had light-sensitive eyes and never left the house without my sunglasses. I was told by my neuro doc that I was just sensitive to light because of my migraine situation. Then about 10 yrs ago, after living in sunny Florida for a few yrs., I started wearing sunglasses in the house when the light reflecting from our pool was becoming more painful and sometimes triggered another migraine. (I have a family, have always been an outside person, and couldn't bear closing the blinds.) Then about 4 yrs ago all my eye problems intensified. I also found that regular indoor and fluorescent lighting triggered migraines. At one point, I was seeing my regular eye doc, a neuro-eye doc, an eyelid specialist and a surgeon before I was finally given a dx of Sjogren's... All the while, never getting a feeling that they understood just how light-sensitive and painful my eyes where becoming. Since wearing the NoIR's and starting the MP, I can't handle any kind of light exposure at all. I feel like a mole, but you have no idea how thankful I am to finally understand what is wrong with me and not feel that if I told one more doctor about all these bizarre ailments, they'd label me as a complete hypochondriac. My next appt with the eye-neuro doc is going to be a very interesting one!
Linda
Last edited on Sun Sep 11th, 2005 20:44 by livitup
____________________
Linda-Dx:Lyme,MG,IC,DI,IB/GERD/Bar.Esoph,Osteo,Migraine,Reynaud's,Sjogren's; 8/05 MP-I, 12/05 MP-II, 7/06 Mod MP-II, 12/06 Restart MP-II, 4/07 MP-III; 3/09 25D-10;CutD/lowluxhome/Noir
|
hhukill
Health Professional
|
Posted: Fri Sep 16th, 2005 04:54 |
|
I was so glad to see so many replies about the photosensitivity. I have been extremely sensitive since starting the Benicar. But, when I started thinking back, I was very sensitive about the time I was diagnosed. I used to love to be outside in the sun. But, around the time I was diagnosed had started hating being outside. It gave me a headache and made my eyes hurts. Of course, now I believe it was a reaction to the vitamin d exposure with the sun. I notice the sensitivity is lessened some now. But, I like it better inside than outside with my glasses.
Holly
____________________
DX: Sarcoid Jan 2003 biospy after mediastinoscopy, bilateral lymph node involvement: Symptoms: Fatigue - muscle aches - fever
Phase 3 Marshall Protocol
|
ShrnHml
Member in Phase 2/3
|
Posted: Fri Sep 16th, 2005 22:57 |
|
So far I have had no eye sensitivity, but then, again, I don't know what the experience is. Do one's eyes hurt as in stinging on the outside or as an ache on the inside.
Can someone enlighten me?
Thanks......Sharon
____________________
Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
|
GeorgeinRollaMO
Member in Phase 3
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
| Posts: | 489 |
| Status: |
Offline
|
|
Posted: Sat Sep 17th, 2005 10:12 |
|
Thinking back, after getting my first tick bite in the Spring of 1958, and suffering what I thought was "sun stroke" a couple to few months later, I started to feel more comfortable with wearing sunglasses when outside, and did, particularly when driving.
However, I REALLY noticed the sensitivity to sunlight/all bright light right after having cataracts in both eyes removed in January 04. I HAD to wear sunshades afterwards or my eyes would burn tremendously, and made me feel very irritable, to the point that when I realized what was going on, I would go indoors in spite of whatever I was doing.
This photosensitivity is what helped convinced me that I most likely had the Th1 inflammation, along with other objective tests, when I first read the sarcinfo.com site in June 04. However, I never had the other eye problems that some folks have reported.
I describe my feeling as burning of the eyes, then hurting if I do not do anything about changing conditions. It is my best clue that I have had, or am having, a hormone flare.
I would say it has decreased slightly, but only slightly, since starting the MP. I will now not have the burning while inside my darkened house if I forget to wear my NoIR 901. But working at the computer monitor, even though turned down to the lowest brightness and contrast, will DEMAND that I wear the 901s, almost immediately. Even watching the TV in the distance is not comfortable without the 901, though it is not nearly as bad as the monitor, and I can do it for a short while.
The 901 and 907 NoIRs are a godsend!!! I tried clipons for a number of months in the beginning over some good Rx sunlens. But this arrangement failed to protect from the sides, and I suffered. I also was hung up on liking the blue/gray shades, which is another NO-NO. The NoIR brown tone is what is needed...I learned!!!
Dark Vader (aka, George)
____________________
Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
|
scooker48
Member in Phase 3
|
Posted: Sat Sep 17th, 2005 15:20 |
|
I too noticed photosensitivity when I started to decrease my Vit D early January 2005, before taking Benicar. And I can't say its decreased yet, although I look hopefully for signs every time I see an on coming headlight at night while driving.
I am making changes in my eyewear when I drive home from work in the afternoons, which is 8 minutes of light exposure. I was wearing the !% NoIRS which only come in the blue/green and another dimestore pair of sunglasses under them. Yesterday, I ordered from NoIRs a pair of 2% Spectrashields (large) and a pair of 1% wraparound (I believe its Model 200) to wear under the 2% Spectrashields. I can't wait for them to arrive!
Is there something wrong with the blue/green shading as George implied? I've asked this question before and thought it was okay.
Soldiering on, Sherry
____________________
Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 5/9/09 D25, D3 6; D25 D2 <4, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal.
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Sun Sep 18th, 2005 05:23 |
|
Sherry,
The lenses from the "Amber" range are required because they block blue light, attenuate visible light the best and block more energy.
PROTECTING YOUR EYES
Best,
Meg
|
Bonnie2
Member in Phase 2
|
Posted: Sun Sep 18th, 2005 07:29 |
|
| p.b as you know I have been mp about since june,even if my eyes dont hurt if I forget them,my eyes within 2-3 days will look as if I have a sunburn on them,or blood comes to the surface,pain,headaches,dryeyesswollen,all of it so even if my eyes feel normal,they are on if they are open,hope you feel better 2bonnie
____________________
Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
|
hhukill
Health Professional
|
Posted: Tue Oct 18th, 2005 22:00 |
|
Hey P Bear,
I saw your post and wanted you to know that my eyes hurt terrible since being on Benicar. I call it my "blinkies". I sometimes have to hold my kids hands or my husbands are when I am going from the car to church etc, even with my 2% NOIR glasses on. There are days that my head hurts just from looking at the computer.
I started phase 2 and had bad Herx the first few days, but are better now. I hope you are doing well.
Holly
____________________
DX: Sarcoid Jan 2003 biospy after mediastinoscopy, bilateral lymph node involvement: Symptoms: Fatigue - muscle aches - fever
Phase 3 Marshall Protocol
|
Current time is 09:59 | |
|
|
|
|
