lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
LLMD put me on doxy again 300mg a day 4 days a week, BIAXIN everyday and Flagyl 3 days a week.
Now that spring comings up Im worried about sun sensitivity. Never had it b4 though.
who here has experienced this?
[ 11. April 2006, 12:49 PM: Message edited by: lymeHerx001 ]
Posts: 2905 | From New England | Registered: Sep 2004
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bettyg
Unregistered
posted
001, From what I've read since 8-04; ALL who take doxy are much more sensitive to the sun/outdoor light. I'm 200% more than before.
Please read towards the end of my newbie post about NOIR sunglasses & sensitivites. MP has wonderful info there from folks that you might find very helpful so you don't have to reinvent the wheel.
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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
YES
-------------------- 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.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I always wear sunscreen on my face and did before I got sick anyway, but I have not experienced any notable difference while on doxy in terms of sun sensitivity. Be careful, but for me it has not been notable.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I know that I was a fried lobster when I was on Doxy and went on a sun vacation to Puerto Rico- Spent half the time in my room as I wasn't diligent enough with suncream and staying in the shade...
in NYC I was fine with just generally staying out of the sun-
cheerio- sarah
Posts: 119 | From new york, NY, USA | Registered: Apr 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
It seems like I always burn easy the beginning of summer anyhow since im a hermit with this lyme.
Ill take my precautions. If Im ever at the beach I always use sunscreen.
Ill keep on the look out for any changes.
Id much rather me a little more sensitive to the sun then have this cursid neuro/clinical lyme.
This lyme has been going on for 13 years. The worst is the fatigue burning excersise intollerance and oh yea I almost forgot,, memory
Posts: 2905 | From New England | Registered: Sep 2004
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WildCondor
Unregistered
posted
The sun sensitivity with Doxy is pure evil. You can burn even with SPF 50 on, and you can burn though your clothes.
After an initial exposure, even through a car window, you can burn really badly. be wary of any tingling sensations on your hands, its from the sun and the doxycycline. Stay totally out of the sun, wear gloves if you have to go and a hat and thick clothes. You have to become nocturnal when you are on it.
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Yes and the higher the dose, the greater the effect
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Fallene Cotz Water Resistant Sunscreen, SPF 58, was recommended by my husband's LLMD to help with this problem. It is available from drugstore.com, and probably many other places. We live in Florida, and it has been good, but it is expensive.
Posts: 119 | From Southwest Florida | Registered: Sep 2005
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I wasn't. I was on doxy all summer one year.. and I didn't burn or anything.
But BOY did it cause light sensitivity so bad I had nothing but major headaches on it. I killed as much light as I could. light off the computer hurt my eyes.
But no, I didn't have sun sensitivity, unless it was beaming in my eyes.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Im really parinoid about this doxy and sun issue. Ive been taking 100mg 3 times a day and it seems that I cannot avoid the sun.
I just went out in the sun for about 10 minutes, my face seems a little red and hot but no pain.
What should I look out for?
I read many drug sites and they say that doxy and sun sensitivity is a rare side effects.
They also list about 30 other drugs that cause this.
From what I understand though is sunscreen is completelly in effective,, I dont get this.
Apparantlly the doxy absorbs the UVA radiation waves and the sunscreen works mostlly on UVB and shorter UVA waves.
Im really going to miss going outside. I dont want lyme anymore but I want to enjoy the out doors too.
I was also looking into supplements or vitamins that I can take to offset the sensitivity.
Someone mentioned PABA but another site said that it was useless.
Finnally in a medical abstract I read that 46% of people on tetracyclines are sensitive to the sun.
Is is possible that I would be in the 53% that it doesnt bother?
What should I look out for.??
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Heres another one:
in this article is says:
Doxycycline is similar to tetracycline, yet has superior absorption compared to tetracycline. It is associated with sun sensitivity in less than one percent of patients taking the drug.s photosensitivity can manifest itself with severe sunburn and possibly blistering. Patients taking doxycycline should try to avoid sun exposure and wear sunscreen daily.
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
this is another interesting one:
Tetracyclines have been used for treatment of gum infections in dental surgery. In orthopedic surgery they have been used as markers to identify living bone. The patient is given a tetracycline antibiotic for several weeks prior to surgery. Some of the tetracycline is absorbed into the bone during this period. Since tetracyclines glow under ultraviolet light, this absorption helps the surgeon distinguish the living bone from the dead tissue that must be removed.Posts: 2905 | From New England | Registered: Sep 2004
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posted
I have seen excerpts that indicate sun sensitivity is possible with the cyline antibiotics and prolonged sun exposure to uv light may increase the probability of the event. This includes the use of tanning beds, etc.
Also, interactions with your other medications may also enter into the equation. Your complexion, underlying skin tones and eye color gives you a good indication of melatonin levels in the skin and also increases the risk of burn, before you enter medications into the equation.
Use common sense and sunscreen protection and be observant. Also, keep in mind, that as we enter the warmer summer months in the northern hemisphere, that UV rays from the sun will be strongest between 10 am and 2pm when the sun is at the zenith in the sky, and produces the strongest , most direct sunbeam.
Another thing to keep in mind is that: do not be fooled that you can't get burned on a cloudy day. Low stratispheric clouds will mask the effects of the ' Warmth " of the sunlight coming into the earth's atmosphere and the cloudiness somehow interfers with the eys perception of the sun. So, you can get a rather wicked burn even on a cloudy day. If you are in a major TV market, with a news station that is really into meterology; they should report daily something called a burn index. That should also help you prepare for your daily activities.
Many products, even things like Oil of Olay, moisturizer, can have sunscreens in them for extra protection. Read labels and this will help you decided on subscreen levels. You want to use products that block UVA and UVB rays to be most effective.
Last, but not least, should you get burned, I have found products containing Aloe Vera to be applied topically to the skin to be most soothing and moisturizing . If you look closely enough, some stores such as Walmart, offer Aloe Vera Gel, usually in a 12 or 16 ounce bottle that has a 1% percent lidocaine mixture in it. This will ease the pain of a sunburn. These products are reasonably priced. They are also good for an event such as a kitchen burn.
Hope that this helps you. Stay strong and have a good day.
( I used to be a nurse and read a lot of books on meterology: I hope that what I can remember can be of help to all!)
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
I have seen excerpts that indicate sun sensitivity is possible with the cyline antibiotics and prolonged sun exposure to uv light may increase the probability of the event. This includes the use of tanning beds, etc.
Also, interactions with your other medications may also enter into the equation. Your complexion, underlying skin tones and eye color gives you a good indication of melatonin levels in the skin and also increases the risk of burn, before you enter medications into the equation. The lighter complexed you are, the more the burn risk.
Use common sense and sunscreen protection and be observant. Also, keep in mind, that as we enter the warmer summer months in the northern hemisphere, that UV rays from the sun will be strongest between 10 am and 2pm when the sun is at the zenith in the sky, and produces the strongest , most direct sunbeam.
Another thing to keep in mind is that: do not be fooled that you can't get burned on a cloudy day. Low stratispheric clouds will mask the effects of the ' Warmth " of the sunlight coming into the earth's atmosphere and the cloudiness somehow interfers with the eys perception of the sun. So, you can get a rather wicked burn even on a cloudy day. If you are in a major TV market, with a news station that is really into meterology; they should report daily something called a burn index. That should also help you prepare for your daily activities.
Many products, even things like Oil of Olay, moisturizer, can have sunscreens in them for extra protection. Read labels and this will help you decided on subscreen levels. You want to use products that block UVA and UVB rays to be most effective.
Last, but not least, should you get burned, I have found products containing Aloe Vera to be applied topically to the skin to be most soothing and moisturizing . If you look closely enough, some stores such as Walmart, offer Aloe Vera Gel, usually in a 12 or 16 ounce bottle that has a 1% percent lidocaine mixture in it. This will ease the pain of a sunburn. These products are reasonably priced. They are also good for an event such as a kitchen burn.
Hope that this helps you. Stay strong and have a good day.
( I used to be a nurse and read a lot of books on meterology: I hope that what I can remember can be of help to all!)
Posts: 719 | From Delaware | Registered: Jan 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Thank-you this is what Im looking for.
Practical infomation that Is not fear based but based rather on statistics or and other factors.
Its just that I get burning skin normally or as part as a herx so Its tough for me do distinguish what is directlly from the doxy.
Many sites say, it may cause sensitivity.
Nothing is difinetive Im just trying to find out what to look for.
In the spring I usually get a little red and sore from the sun but sunscreen works.
Im just worried that sunscreen wont work at all if im on doxy.
From what Im seing is that people that to those people who have a sun allergy the sunscreen doesnt work.
Ill let you know how things work out because were gonna have lots of sun this week.
Posts: 2905 | From New England | Registered: Sep 2004
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
The more doxy the more hypersensitivity.
If you take 100 - 200 mg per day the problem will be very small.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
thanks,,
has anyone found any sunscreen that has been effective for them?
without being too toxic?
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I used mexoryl which is not fda approved, on top of that I put zinka which is colored zinc, and then I wore a neoprene face mask, and still I burnt. It seems impossible, but it is true.
I had read here about burning but just wore sunscreen every day and had no problem for two months, and then one day my face hurt. I burnt it so badly I had an infection 2 weeks later and had to stop the doxy to go on another antibiotic and a steroid for swelling, to fight the disgusting nose and lips.
Since then I look rediculous when I leave the house with pink zinc on my face. It is bad enough I am going to switch to another antibiotic.
Posts: 243 | From chicago | Registered: Dec 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
all this from doxy?
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
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posted
and what dose were you on?
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I take 400 mg a day. I am quite sure it is the doxy since I remember burning about three times in my life, and I have never blistered until now. I do have freckles, though.
I would just be more careful than usual, and if things start to tingle, get out of the sun. I was in an extremely sunny environment at the time of the burn. And mexoryl is a great sunscreen, by the way.
Posts: 243 | From chicago | Registered: Dec 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
ok I thought meroxyl was a drug
interesting,,
again at worst I might need to pulse it
I think ill go with just 100-200 mg a day now.
I just remember having those sunburns as a child. They were terrible.
Havent had them in a couple of years because of good sunscreen,, so well see what happens.
I think today Im gonna go out and get some
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I packed on the sunblock when I was on doxy (200mg bid) and burned to a crisp. My skin stayed discolored for months afterward and my fingernails curled off my fingers and I almost lost them. I've switched to Biaxin XL and can now handle the sun.
Posts: 75 | Registered: Aug 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
OH MY GOD,, thats not what I wanted to hear.
How long did it take for you to burn, and how long were you on doxy
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Im just gonna just take 100mg at night and see how I fair.
This would allow me to at least get some sun (color)during the day. So when I take the doxy ill have a darker skin tone
Posts: 2905 | From New England | Registered: Sep 2004
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posted
mexoryl is an ingredient in sunscreen, mexoryl xl, and sx
you can get it in canada, and in europe, loreal and that whole group of comestic companies use it.
Posts: 243 | From chicago | Registered: Dec 2005
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posted
Had definite sun sensitivity while on the Doxycyline. And me loving to be outdoors...I had to slaver on the sunscreen and heaven forbid if I forgot. It didn't take much at all to make me burn.
posted
I think if you take only 100mg of doxy at night, you're wasting your time. You must ingest heavy doses to kill the borrelia and cross the blood/brain barrier.
Posts: 75 | Registered: Aug 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I know, thats what worries me.
Im just supprised that I had a herx from this stuff. I had taken it in the past and nothing happened.
Thas of course before that dreaded BIAXIN herx that lasted for months.
Also Ive been on Flagyl recentlly so maybee that opened up some cysts?
Posts: 2905 | From New England | Registered: Sep 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi all
The sun sencitivy to doxi is called -Photo Toxic- google it--
Doxi made me Super light sencitive- Even the light from my computer burned my skin -Im not kidding-- I could not go out side at all--
When you are Photo toxic- you become Alergic to light-- and besides blistering your skin -you will become sick from it (sun Poisioning)
After futher research I found out that -Citrus- even in Small amounts can make the Photo Toxic effects Much Worse--
I cut All Citrus from my diet and the sun burn effect is 95% gone--
Regular sun screens help little if at all- You have to use Wide Spectrim sun screens like- Blue Lizzard-- from Alstralia-- I have not used it but from what I have read it should help--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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bettyg
Unregistered
posted
Also, I go outside early evening; sun is pretty well down, and I don't have to worry about the sun/burns.
I lear a floppy hat protecting my ears/neck in ddition to my face.
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
well I picked up a uva/uvb sunblock 45. It goes on smooth.
My skin feels better today.
I took a doxy last night and it did nothing.
I dont understand this damn disease. First I had a herx after 4 days, then felt terrible like I wanted to die. Then when I went off I had a honeymoon for a couple of days.
Then back to terribel, then I took a doxy and things were better, then pain again sun sensitivity and now nothing?
What gives?
I guess like my doctor says, well have to wait and see
Posts: 2905 | From New England | Registered: Sep 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi LymeHerx. So sorry you're not feeling well. Doxy and summer are a bad combination! By the time you feel something going on, it's too late.
I did a month of doxy in the beginning of treatment. I covered up in sunscreen and fished in the shade. However, in a short while, my hands went numb. In hours, I had the worst nerve pain imaginable. Later, swelling. I burned clear through my fingernails, even slathered with SPF one zillion.
Here's a picture a couple months LATER - you can see the new growth at the nailbed. For many weeks my hands and fingers were swollen and I could hardly do anything with them.
As an aside, I tan easily, rarely burn, and have never been "sun sensitive."
Doxy is good stuff but I sure do hate it. Everyone, please use the utmost caution with Doxy + sun!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Michelle, How much doxy were you on?
Did you ever consider taking MINO?
Posts: 2905 | From New England | Registered: Sep 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by lymeHerx001: Michelle, How much doxy were you on?
Did you ever consider taking MINO?
400 mgs (200 mg twice a day).
The doctor took pity and switched me to high dose amoxicillin + Probenecid after one month of Doxy, then eventually to IV.
Bad enough to get Lyme disease. You do NOT want to keep a person from fishing, for crying out loud!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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