Topic: Sick from LIGHT while on antibiotics for lyme - WHY?
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Can anyone answer this.
Has this happened to anyone out there and if it did, what did you to to get better from it.
I have NEVER had a problem with the light outside, or inside. I had the floresent lights bother me slightly, but only ever to slightly, never had a problem with daylight like I do now.
WHY????? I am just loosing it in the mind. My LLMD cannot know why either.
Heres the story.
I was off antibiotics for several months, had a major relapse, became allergic to ALL foods and actually anything I swallowed. All pain was back, and digestive sickness became severe.
ALL this got better within 2 months. I was very lucky that the food issue was resolved within 2 months. Pain got better, stamina was slowly returning...
then was switched from Biaxin and Flagyl to Doxycycline and Flagyl. I was having really bad heart racing on the Biaxin and had not had this 2 years ago on it, so had to stop it,
I then was on the Doxy and Flagyl for about 8 days or so and
one day awoke and was violently ill from the daylight. Life threateningly ill.
LLMD put me on babesia treatment, as I was getting worse, this helped me be able to watch TV again, and the light was a little better, but not like before.
I cannot go out in daylight, my head burns, my body burns, my heart races, I near die. My left side starts to loose feeling as well. ALL this happens when I am having a lyme herx... as well.
WHY! has this happened, I know about the Marshall Protocol, but I am on or was on the minocycline, have done the Marshall Protocol Antibitoics.
WHY! is this light bothering me, Why cant I get one DAM break. I am angry. Oh, and to mention the SEVERE brain fog in light as well,
Overnight, I became deathly ill to light overnight, has this happened to anyone else?|What was it, and how did you get better?
I am on some babesia treatment again, my breathing has been going downhill, just cannot kick this.
thanks,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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bettyg
Unregistered
posted
Trish, yes doxy will do this to you; it has me too. I'll give you some info & then check out www.marshallprotocol.com looking for Barb's info on eye sensitivitiy/clothing/darkening the room, etc.
Read about the NOIR sunglasses & sensitivity towards the bottom of what I post here ok....
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
posted
I have exactly the same thing. Except it happens if I do not take ABX. I never had this problem in my first bout of Lyme in 1987 to 1992. When I relapsed in 2000 I went up in flames with my skin. I could not go outside or even let the sun touch my skin through a window. All lights burned me. I would burn inside, like I was being microwaved. There is nothing like this agonizing pain. If I was yeastie it wold be worse. I was housebound. My heart will skip, race and be affected. This stopped when I went on amoxy. I am now on bicillin and the sun does not bother me unless right before my mensus. If I stop my shots within days I am burning in the sun. It is some sort of inflamation of the peripheral nerves, is my guess.
Posts: 160 | From texas | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey
You might want to think about getting a special pair of tinted glass's for indoor use.
This seems to help alot.
Take care dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bg2711
Frequent Contributor (1K+ posts)
Member # 1865
posted
HI Health,
Yes, I am one of those people with the sun problems too. I couldn't go outside for about a year. I still have problems but not as severe as it was.
Try going on Plaquenil, it has helped me considerably. It is used for people with Lupus and also for Lyme/Babesiosis.
I take it every day and I don't feel so awful while exposed to the sun while in the car. I still never just "sit" outside, I limit my outdoor to getting in and out of the car and walking rapidly inside a building. I even have trouble if in the car too long and having the sun beat down on me.
I had trouble even in my house when the sun would shine in. In the sunlight I would feel like I was dying, heart arrythmias, dizzy, foggy, urinary frequency, rashes, felt like death, sweats, chills etc.
I take acyclovire and Plaquenil now. I was on Zithromax for a long time. I have been off antibiotics for about 1 yr. now.
I would stay off the Doxy, that sure won't help because of the sun sensitivity it has.
I still dread the summer though and the long hours of sunlight. I feel and function much better in gloomy weather. Good luck.
IT's hard to duck the sunlight, it is every where. Barb
[ 20. March 2006, 06:17 PM: Message edited by: bg2711 ]
Posts: 1131 | From Ohio | Registered: Nov 2001
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Lydie
Unregistered
posted
I had this for 2-3 years no matter what antibitoic I was on. MY ANA was high, so II was having lupus=like sun sickness, from the Lyme. A skin biopsy confimed autoimmune activity in my skin. It's better now though. Couldn't take kids to beach, lived like a vampire.
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Light bothered me when I was full blown lyme.Like lightning in the eyes. also when doing abx's at first beginning treatment. Sounds like your still infected badly. keep treating Tell LLMD it took me quite a while to get over the light problem also it seemed like when I was loaded with toxins from tretment it got worse.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Perhaps sensitivity to light makes the people candidates for Marshall therapy. ????
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
thanks everyone,
Really helps when others have had the same thing and it got better. You never know how lucky you had it when something like this happens. You dont even think about things like this, sick from light, sun and so on. I just hope that this is the end, and if I keep treating it will all go away.
Overnight the light thing happened, It is unreal, I hope I dont wake up one day unable to move, it is so very scary. Overnight, light becomes life threatening, no warning what so ever.
I am on Babesia treatment for 6 weeks again, will see how this goes. I may just need lyme treatment, will know soon.
Last babesia treatment of clindamycin quinine made me stronger, light a bit better, but then lyme started to get worse in a month so did some lyme antibiotics, then started to get worse, felt like babesia again, so on Babesia antibiotics, it is hard to tell what is what.
thanks again!!!!
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I'm no expert, but there are several reasons why this could be happening.
It could be an adverse reaction or increased sun sensitivity from the meds. It also could be a herx from the activation of vitamin D from the sunlight, and/or the bugs dying off from the heat. In the old days, TB sufferers were put out in the sun as an aid to their healing. The higher the bacteria load of a person, the stronger the potential herx from the sunlight as the bugs die off from the heat. It also could be from an acquired or heriditary disorder known as porphyria, which can range from subtle to acute.
Posts: 50 | Registered: Jun 2005
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posted
I'm no expert, but there are several reasons why this could be happening.
It could be an adverse reaction or increased sun sensitivity from the meds. It also could be a herx from the activation of vitamin D from the sunlight, and/or the bugs dying off from the heat. In the old days, TB sufferers were put out in the sun as an aid to their healing. The higher the bacteria load of a person, the stronger the potential herx from the sunlight as the bugs die off from the heat. It also could be from an acquired or heriditary disorder known as porphyria, which can range from subtle to acute.
Posts: 50 | Registered: Jun 2005
| IP: Logged |
posted
I'm no expert, but there are several reasons why this could be happening.
It could be an adverse reaction or increased sun sensitivity from the meds. It also could be a herx from the activation of vitamin D from the sunlight, and/or the bugs dying off from the heat. In the old days, TB sufferers were put out in the sun as an aid to their healing. The higher the bacteria load of a person, the stronger the potential herx from the sunlight as the bugs die off from the heat. It also could be from an acquired or heriditary disorder known as porphyria, which can range from subtle to acute.
Posts: 50 | Registered: Jun 2005
| IP: Logged |
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