Topic: photosensitivity -- does it go away with remission?
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Do you have photosensitivity or are familiar with it?
Have you heard of it going away once the other symptoms are in remission?
I also wonder about hypersensitivity to sounds and smells?
all insights or opinions welcome, please!
Posts: 1173 | From USA | Registered: Nov 2007
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adamm
Unregistered
posted
Mine went away when I stopped doxy.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
All my sensitivities like that went away with treatment. I was also sensitive to touch in addition to light and sound.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Yes it gets Alot better with treatment- mine is gone -
If you are taking Doxi Do Not eat ANY Citrus or cranberries - Goggle Photo Toxic --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Dawnee
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posted
Thats good to know. I am extremely hyper sensetive to touch and sound. Smell too, although that doesn't bother me nearly as much.
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posted
I used to love the sun but became extremely sensitive to it. I have been out in the sun more this year than before so I think it does go away.
I can no longer go to a movie due to the sounds and confinement. I hope this improves as time go on.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Look into babesia. Some people here see the direct relation between being sensitive to sun and babesia (I was one).
To the point of throwing up if sun rays touched my eyes (in my worst days).
Babesia got away = photosensitivity got away. For me it happened twice, as I caught babesia twice. That's why I see the direct relation in my case.
As for hyperacusis, yes, but I can't say anymore what caused it, but I certainly had it. When the bacterial load was high, any high pitched sound brought tears in my eyes, deep pain.
Everything vanished when lyme and co-infections went away. Totally vanished, I can assure you.
Have you got tinnitus? I got that too, twice, as I got twice infected. Mine were low tone, or just like shhhh sound, like if I were in the beach...
First time, tinitus went away fast with treatment. Second time (re-infection), it was one of the last symptoms to go.
What a lovely disease lyme is, isn't it?
Selma
Posts: 6200 | From Brussels | Registered: Oct 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
thanks, everyone! Your replies are really encouraging. It seems like I'm oversensitive to everything -- light, sound, smell, sometimes even my clothes touching my skin causes discomfort.
brussels, my ears do ring, but it's pretty mild and I take NAC to try to protect them.
why is it important to avoid citrus with doxy?
Posts: 1173 | From USA | Registered: Nov 2007
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daise
Unregistered
posted
Hi Cottonbrain,
My sound sensitivity is going away very slowly with heavy antibiotics--but yes, it's going away! It's miles better.
sixgoofy: I had touch sensitivity, too. It was gone after I think a year, before I knew I had Lyme. I got it, along with Bell's palsy. The bell's lasted 4 months.
I don't have photosensitivity, however doxycycline and cipro may make a person photosensitive. There are other meds that do, as well.
Hang-in there cotton, dawnee and gert.
Brussels: you had babesia twice? That's awful
Yup cotton, the sensitivities should go away with prolonged antibiotics.
all my hyper sensitivities are still with me BUT I'M NOT IN REMISSION either although i've had 20 months of pulsed abx and 6 months of 22 supplementals that made me worse.
light, sound/noise, smell, touch, being startled big time
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
bettyg and daise, thx for the replies.
Just wondering, bettyg, if you were able to tell which supps made you feel worse and if they inhibited the abx? I ask because i take a zillion sups.
here's hoping all of us get over these sensitivities!
Posts: 1173 | From USA | Registered: Nov 2007
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bettyg
Unregistered
posted
cotton,
since there were 22 originally, i don't specifically remember which did...
however the 1st sleep pill she gave me reacted terribly and there were 4-5 MORE TO TAKE W/SLEEP PILL, SO I COULDN'T RETURN THE UNOPENED BOTTLES FROM HER!!
just so many of them brought on the FATIGUE where i just could not do anything including coming her and 1 hr. would put me to sleep right on the keyboard! uffda
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
my photosensitivity has gotten a lot better, but my extra sensitive hearing is still around, which is just terrible. I can't even stand a bag being crumpled.... in a different room, even!!!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I just had my first experience of photosensitivity yesterday. I entered a shop and could not open my eyes. I was talking to the owner and could not open my eyes. I finally apologized and said I couldn't tolerate her lights for some reason. She turned them off and I was fine.
I went to work and had no problem with those lights or restaurant lights or sunlight, etc. I will find out just what kind of lights they have.
I was physically sick yesterday. I threw up my doxy and my vegetable juice drink. I never throw up. I have been married 23 yrs and this is the first occasion my hubby and I can recall me throwing up.
I do have Babesia but not very symptomatic until now.
Good grief! What to do about it? Dr had me on abx for Babs for 7 mths. I still tested positive for Babs. A gene test revealed I can't detox abx from my body so she has stopped all but the doxy which I only take 100mg 3x a week.
I started getting weekly IVs of an herbal concoction called MTE9 designed specifically for Babs and felt great while on it. It has been 2 mths since stopping the IVs and this week has been my first bad week, but it has been a tough one. Mostly joint pain until yesterday.
The drive (3 1/2 hrs one way) to get the IVs is a killer to do every week and when I return to the doctor, I plan to discuss other alternatives.
When I was getting the IVs, I was also getting pushes of Glutathione. Genetically, I am defective in my ability to produce glut naturally. Research has found that healthy people have high levels of glut. I always feel best when receiving the glut.
I sincerely beleive I need IVs of glut for life and will be discussing this with dr also. It could be the glut was why I felt so good or the MTE9. Just don't know.
I'm trying to find a doctor locally who would be willing to administer glut on a regular basis.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Daise, yes, I got babesia twice, bartonella twice and borrelia at LEAST twice.
Babesia is hell to get rid of, at least the second time I got it. Bartonella, I feel, even more difficult. Borrelia, in my experience, the easiest to disappear (ONCE all others are gone). But I guess we're all different.
I didn't take prolonged abx, mostly herbal and alternative treatments though.
Sensitivities will go away independent of what kind of treatment. Critters have to die (or go dormant), that's it.
Luvs, sorry you got photosensitivity. I know you're an outside person, like me. I hated that symptom because it made me a prisioner of my house.
Hope you gat rid of the damm babs. I believe it is responsible for much of lyme photosensitivity, even though it's not accepted mainstream as a babs symptom.
For me it was clearly a babs symptom.
Posts: 6200 | From Brussels | Registered: Oct 2007
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
This will sound really stupid of me but for two summers, I told people there was some strange problem with the sun that scientists weren't admitting existed.
The sky was so bright and the sun had a haze radiating around it.
Needless to say everyone looked at me as if I were nuts. But I insisted it was a new phenomenon.
This was while I was on antibiotics and thankfully all is normal in the sky now.
Posts: 1302 | From USA | Registered: Dec 2002
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posted
My daughter has extreme photophobia. Dr. J says this will probably be her last symptom to go away.
It has left us housebound and living with all the shades and curtains drawn.
I just bought some amber colored lights the other day and she is able to tolerate the light from them!!!
Posts: 41 | From Warfordsburg,PA | Registered: May 2007
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posted
I had significant photosensivity. Got to eye dr for check up and she said it was dry eyes. Drops would help. I was skeptical, but I am much much better with more permeable contact lenses and using my glasses a little more.
I find it unbelievable because it as it was to point at times that I was hanging sheets over windows to make a nice dark cave. Also wore sunglasses all the time which made me look and kind of feel like a drug addict. I sort of got a bang out of that which tells you little fun I was having at that point.
Turns out that the dry eyes can be from lyme.
so those replenish eye drops OTC could be a big help.
also a trip to eye doc could be good. I was very clear that I was sensitive and she didn't dialate them until we knew I would be ok with it.
Good Luck.
Posts: 56 | From Virginia | Registered: Jun 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
many thanks for all your input. this is one of the hardest symptoms to deal with, and i feel for each of you.
bsigel, have you tried draping cloth over the lampshades for your daughter?
that's what i do and it really helps. (It may be a fire hazard though)
Posts: 1173 | From USA | Registered: Nov 2007
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posted
this is very good news to read - thats if any of you are still around to reply lol just good news that most of you are finding that your sensitivities are disappearing or at least slowly lessening with treatment
I'm currently awaiting my Igenex results after a couple years of terrible symptoms like us all
my worst ones are my new found sensitivities !!!
1)photosensitivity (sun makes me red very easily and rashy and i used to be able to tan like no tomorrow) and photophobia (eyes start hurting with lighting, sun and tv screens/computers)
2) chemical sensitivity - like any of my old skincare products i cant go near b/c they are suddently too strong
3)food intolerances - suddenly can't eat a few things without feeling a lil sick afterwards even no my allergist says i have no allergies/intolerances (from prick and patch testing respectively)
- anyone else with the chemical and food sensitivies caused by lyme or co-infections
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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posted
sorry just o add to that its a terrible situation b/c im very photosensitive to the sun but also really chemical sensitive therefore can't find any sunscreen (even fully physical ones) that don't irritate my skin for the time being - so no sun for me for the past two summers ... argh
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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