posted
OMG this is horrible. My husband and I both have LD and we're both taking 400mg Doxy daily. We typically live in our garden but we have become so hypersensitive to sun that we're wondering how we will get through the summer.
Staying indoors is not an option. We have far too much time and money invested in our garden hobby and we are obligated to tend to it.
We are getting burned even while using the sunscreen our LLMD recommended. We where protective, wrap around sunglasses. I just ordered sun protective shirts. (Cannot imagine wearing them on hot days...but I guess we have no choice.) We wear wide brim hats and long pants. UGH!
The "burns" are quite odd; the skin almost looks as if blood is attempting to leak through our pores. And the weirdest thing is the feeling of cold rain on our skin when there is a cool breeze or even when I wash. Very, very odd sensation.
So...to my fellow lymmies I ask you: how do you combat the sun sensitivity associated with doxy?
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I guess I have been very fortunate. So far the times I have been in the sun, I wore sunscreen and long sleeves and pants and a big hat. I only stayed in the sun for 30 minutes at a time and I have had no adverse effects.
This weekend I am suppose to go on a picnic and to the zoo. I guess I will see how spending more than 30 minutes in the sun is going to effect me.
It is very frustrating to have to be ill and then on top of that feel like you are bound to the indoors when it is so nice outside.
I went to the beach in Nov, while on Doxy, but only stayed in the sun 30 minutes at a time, with plenty of sunscreen and completely covered. Maybe the angle of the sun back then helped.
Maybe someone else will come along with more info. I am interested myself to see what ideas others may have since I want to spend more time outdoors this year.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I was on Doxy the summer of 06, and I'm a boater. I was pretty sick that summer and didn't do much boating but I did invest in a Coolibar umberella with 50spf. I still love it.
I would sit in the sun for 10 to 15 minutes per day with no issues.
If I had to be out I used a high SPF and a big brimmed hat.
For gardening you should check out Coolibar products - they have great hats, cool long sleeve shirts, gloves, slacks - the works. They are an Australian company and Aussies swim in long pants and long sleeves.
Posts: 1761 | From USA | Registered: May 2006
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I limit my exposure to short periods, look for shade, cover up, and use sunscreen.
My LLMD says he is willing to pulse the doxy/plaq with a different combo if I don't want to completely switch to a different combo for summer and I start burning too much.
I didn't want to switch because I am having slow but steady improvement in my head and neck pain with the doxy/plaq.
I totally understand the odd burns and cold feelings.
Last year I was in NYC for the weekend when it was a freaky 90-95 degrees for 3 days in April. I was on doxy and burned quite badly. My skin became really tough and red, like leather.
When I am exposed to the sun I notice the feeling of ice cold pins and needles on my hands. I burn easily on my hands and the base of my neck in the front around my clavicles.
Do the best that you can.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
During the sunny times of year, I ask my LLMD to not put me on doxy.
If that's not an option for you, I think the best thing is to try to stay out of the sun and when you are in it, cover up with long sleeves, pants, wide-brimmed hats, etc...
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
| IP: Logged |
posted
Yes, I ordered the Coolibar long sleeve button up shirts. At $60 a piece, I only bought one each for my husband and me.
For now, I'm using a $10 tight weave straw garden hat from KMart, lightweight sweatpants,a chambray shirt and, of course, gloves. (I think I wear less during the winter... :-] )
We also wear Cocoon brand sunglasses. (They fit over our prescription glasses)
I'm thinking about buying the arm sleeves (arm socks) to keep in our vehicles because we're getting burned while traveling, too.
I'm lucky in that I am able to stay realatively active. In fact, I feel worse if I don't push myself to be active. Most of my LD symptoms are fybromyalgic-like.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
There is no way to combat the sun sensitivity associated with doxy. It's either stay out of the sun completely, or stop the doxy.
Generally, 30 days of doxy at the beginning of treatment is all that is ever needed. That kills ehrlichia in case you have it. You have plenty of other meds to choose from to treat the lyme and coinfections.
No need to be staying on doxy.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I disagree about how long you should stay on Doxy. The mechanism by which it works is needed long term. It keeps the bacteria or spirochete from replicating and thus it dies eventually on its own; but this is a long term process.
I have been on Doxy for 10 months and have at least another 10 months to go according to LLMD. It is also best to get your D level up to a high level while taking it to modulate your immune system.
I believe the 2 together is the key.
I have already been on many other antibiotics such as Flagyl, Zith, Biaxin, Malarone, Minocycline, etc. None worked. I am convinced that for now at least, long term use of Doxy is the way to go.
As far as the sun issue, you just have to take precautionary steps to protect yourself.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just to let you know, I had a total of 3 lyme doctors. The first one put me on doxy. I got the doxy burn. He then apologized to me for putting me on doxy in the summer. And, he switched the meds to something else.
Neither of my next two lyme docs used doxy.
It has been 5 years since I completed my treatment and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
I had lyme, babesiosis, and bartonella. I was undiagnosed for at least 10 years. Still, I got rid of this disease.
There are many protocols for treating this disease. The one that got me well is the Burrascano protocol. It has also gotten all my friends well.
As you will see, Dr. Burrascano lists many, many meds that are effective against lyme disease and its coinfections. Doxy is just one of the many.
Burrascano recommends high-dose combination antibiotic therapy to get rid of lyme disease. The doc that got me well used amoxicillin and flagyl. That is only one of many alternatives.
The doxy burn is so nasty that nasty is not a nasty enough word for it. I thought I would go out of my mind with pain. It felt like someone had a blowtorch to my hands.
And, the extreme sensitivity to the sun that I had after that lasted a long, long time.
Definitely wear gloves while driving. You can burn through windows and the windshield.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
My LLMD told me to get Neutrogena's 100 sunblock. I've tried 50 and that helped a lot after I burnt my nose a week or so ago.
He's keeping me on it for now because of rocky mountain spotted fever and other co's like ehrlicia and it does have some bart activity.
Your sensitivity may be different than someone elses. Just be careful and cover what you can while on it.
Posts: 144 | From PA | Registered: Nov 2009
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yep, it is the doxy burn. I had it. Better start wearing gloves when driving. You don't want it to get worse.
When it gets bad enough, you will see little bumps on the spots that really tingle. And, the tingle can start to feel like fire.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I have to be outside alot during summer. Live on a farm. When summer starts my LLMD switches me off Doxy if that is what I am taking. Right now I am on Biaxin. Not the same abx treatment works the same with each individual. I have been seeing my LLMD since fall of 2008 and I have been on several different abx. Sometimes he has me pulse different ones sometimes I am on one continuously at high dose. It is his call according to how I feel and what my current symptoms are that is how he decides to treat. But like I said we and our systems and how they react to Lyme treatment are all highly variable.
-------------------- IGM Result Positive CDC/NYS Result Positive
posted
My husband (retired) is outside much more than I, since I work full time. We are both on doxy.
My ears are sore, itchy and rough. My nose is rough and is beginning to look like a drunk's nose. My forarms look like I'm getting over a case of poison ivy rash.
He is looking bad. His forearms look like he had hot cooking oil splashed on them.
AN IMPORTANT QUESTION: Does "doxy burn" increase your risk for skin cancer in the same way that regular sun exposure does? Damn...I don't want to fight lyme only to die from skin cancer!
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Sunburn from doxy is very bad - in my experience. I had the scars from it for a while... I wasn't even in the sun that long. It was in NJ & the sun wasn't even 1/2 as strong as it is in the south.
Either try another abx or stay out of the sun. I don't think you can rely on sunscreen. It has alot of chemicals which may cause cancer.
Best bet would be to wear sunproof clothing & hats, gloves, etc. but it's not always practical. Doxy makes your skin photosensitive. It's worse that a regular sunburn - not that a "normal" sunburn is anything to joke about...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
Wow, gardening!? nice! maybe early and late in the day are your best bets and of course all the topical and physical protection as listed above.
I live in Arizona and was on Doxy in 115 degree heat. I get it. My LLMD gave me an RX for the car to have special tinting even on the windshield and I must carry the RX in the car at all times. to avoid tickets! I have had no choice but to bend my life to heal first. The doxy and sun was so painful and as a retired skincare expert, the ABX can make your skin so thin and therefore sun penetration deeper and damage greater. Enjoy every second of your garden! if you are just begining your journey prepare yourself to the possiblity that you might have to make accommodations and come to terms with the rigors of Lyme treatment. Fight to keep that splendid garden! Lyme takes so much.
-------------------- AzDaisy life requires action Posts: 58 | From Tucson, AZ | Registered: Apr 2010
| IP: Logged |
posted
I was on 400mg of Doxy for 9 months or so and very quickly had the same tingling sensations you describe. I ended up getting burned pretty bad. I still have some red marks from I burn I got 1.5 years ago.
I disagree with others that there are plenty of comparable medications to consider. Yes there are lots of other drugs but they more or may not be helpful. Only way to find out is to try. I've been on other meds and have so far not needed to get back on Doxy though I still consider it from time to time. Defintiely explore your options with you doctor.
In the meantime, stay covered. The one sunblock that did anything to help prevent burns was Neutrogena Ultra sheer drytouch sunblock at least SPF 55. The key ingredient is something called Avobenzone.
Best of luck.
Posts: 48 | From Baltimore, md | Registered: Jul 2008
| IP: Logged |
posted
ten cent suncreen opionion...get natural zinc and titanium dioxide. they are surface reflective and are OMG I can't spell today! phsyical blocks rather than chemical. I am way too sensitive for those. Eurcerin for sensitive skin on mass market or John Masters for speciality.- this one is all organic too! lucky vitamin has good prices on it. cheers!
-------------------- AzDaisy life requires action Posts: 58 | From Tucson, AZ | Registered: Apr 2010
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Stay off doxycycline for the summer. That cold rain feeling and tingling and burning can be very annoying and painful.
Switch to Ceftin or another antibiotic until the fall.
In my experience,
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
posted
I'm so glad I'm off of doxy for this reason. When I was on it, I had to start wearing long sleeves, sun gloves and hats, and even then the heat would make my skin prickly sometimes. I also used a sun blocking umbrella when outside.
I think the suggestion of going off of doxy and on to something else during the summer is a good idea.
Posts: 975 | From California | Registered: Apr 2007
| IP: Logged |
posted
Underarmer Shirts for the sun help also, cheaper than 60.00. That's what my daughter wears doing her sport in the sun on doxy, thinking of making a change if they don't feel she is ready to come off abx, by the end of the month.
Posts: 29 | From NJ | Registered: Feb 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just jumping in here. I just had this visual image of a moveable shelter for when one want to garden or spend time outside.
It would have to be large enough and a tight weave for good shade and positioned to avoid sun "bounce" - and still maybe just at certain times of the day . . . but it may be a very good option in addition to covering up with cotton.
I think sunscreens' chemicals can make things worse for many. So, a sun tent may save the day. LLBean, REI, camping places should have them but also sites for skin cancer patients, I would think.
Sun tents could also be fashioned out of the right material. Certain colors would work better than others.
Support that any hardware store could help you design - remembering a way to stake it to the ground so it does not fly away with the first gust of wind. There may need to be air slots in some parts - or the bracing configured in a specific way to work with the air flow.
Sounds like a fun project. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic