Hi, I have recently started Doxy and am going away at the end of February for a week. Has anyone gone away to an island while taking Doxy? DId you stop the meds all together? Did you start something else while you were away?
Thanks for any advise.
Posted by hopeforhealth (Member # 23673) on :
I should have been more clear, I am afraid of burning even though I won't be spending hours laying out in the sun I do hope to be able to go on day trips etc where I won't be able to avoid the sun. Also do you have to stop taking it a certain amount of time before so it is out of your system?
Thanks again.
Posted by Lymetoo (Member # 743) on :
I'll move this to Medical Questions so you will get the correct answer! It's important!
I believe you have to be off doxy 10-14 days prior to sun exposure.
Let's see what the experts say!! Posted by hadlyme (Member # 6364) on :
How much are you on?
I just started on doxy. I live in AZ where I love to lay by the pool. I stated to my dr. this fact again, and he told me that 200mg 2x shouldn't make me so sensitive to burn...
But I'll watch it. It's not all that hot here right now, so not at the pool.
Another question is... Do you burn easy to begin with? Are you fair skinned and burn first times out? or does your skin handle the sun.
If you're sensitive to begin with, my guess is that doxy might make you more sensitive.
Are you planning on using sunscreen?
I had IV doxy years ago, strong stuff... and I burnt my face in a snowstorm watching my daughter play softball (Montana in the Rockies in the spring!)
Do you feel comfortable in asking your dr this question?
Posted by Lymetoo (Member # 743) on :
Yes, it WILL, hadlyme! You could seriously burn your eyes too.
Posted by tricia386 (Member # 29623) on :
what if you wear sunscreen???
Posted by Lymetoo (Member # 743) on :
You can't cover every single inch.
Posted by hopeforhealth (Member # 23673) on :
I have been on it before and did wear sunscreen but forgot my lips and they got majorly burnt. I wouldn't say I burn easily but I have fair skin and I don'y want to have to worry about it. I was under the impression it was more of an issue then just wearing sunscreen but I am not sure which is why I posted. I could always get chapstick with sunscreen and I always wear sunglasses.
Posted by Lymetoo (Member # 743) on :
It would be far safer and easier to get another abx for while you are away.
Posted by hopeforhealth (Member # 23673) on :
I agree it would be safer, I won't see my doctor before going but have amox.and I was wondering if there would be any problems with just switching for a couple weeks? Just thought I would get some input here but I know ultimately I should call the office and see what they suggest.
Thanks for your help.
Posted by Lymetoo (Member # 743) on :
Sounds good .. call them.
Posted by rmsfnc (Member # 27539) on :
Sunscreen didn't help me a bit. Applied generously and frequently but still got burnt on hands, nose and lips. Wore hats stayed under umbrellas, etc. The indirect sun was still enough to cause the burn.
Posted by sutherngrl (Member # 16270) on :
I have been to the beach twice since being on Doxy and am going back again in March. I just use sun screen and wear a big hat and long sleeves and it works out just fine for me. I don't stay out more than about 30 minutes at a time. I guess it depends on how sensitive you are to it. It worked out fine for me.
Posted by Remember to Smile (Member # 25481) on :
Everyone needs to be extra careful about sun exposure while on doxy, esp at the usual dosing rate for Lyme disease, 200 mg twice a day.
Three pharmacists (of three ethnicities!) kindly gave strong warning about sun damage on high-dose doxy. Good thing I already knew.
People have experienced permanent eye damage from sun exposure while on doxy. Wear sunglasses providing protection from damaging rays!
Everyone should wear sunscreen, doxy or not. Just common sense to prevent some cancers. Untreated bartonellosis can lead to melanomas.
Outdoors on doxy in summer, in addition to sunscreen, I wear floppy hat and a nice, light-weight, long-sleeve UV-blocking shirt from EMS. LOVE that shirt. Couldn't believe how cool it kept me, plus looking nice.
After I got a "doxy burn" on my hand while driving just 40 min one summer afternoon, I bought UV gloves w/ no fingertips from EMS. They're designed & marketed for canoeing & kayaking. Luv these, too.
Low-cost, light-weight leg protection on an island adventure: wear "greens" or "scrubs" like hospital staffers. Many consignment shops offer these at low price. Wear scrubs in the water, esp while snorkeling to protect the back of your legs to some extent. The pants legs are wide, so they'll float up as you snorkel, leaving ankles to burn.
Maybe there are UV-blocking knee-high socks to complete your ensemble?
Each of us is unique, so you'll have to be wise about your own sun tolerance. I could be out in the sun unprotected for up to 10 min in the US in summer, but if you're going closer to the equator, you'll have to be sure that you always have the option of shade. Deep shade.
Walking in a city, I found that summer sun felt like it was searing me right thru my beloved UV shirt. I would frequently need to rest in the shade against the side of a building. I did not come home burnt, but I may have if I'd ignored the warning sensations.
For instance, when hand burned while driving, I felt it and knew it was happening. Just chose to go all the way home.
Doxy burns are worse than "regular" sunburn, closer to a chemical burn.
Posted by Remember to Smile (Member # 25481) on :
hope, You're wise to call your LLMD for best advice on meds.
I'm a CLD patient. I wouldn't stop abx for an island trip. I'd only switch if my LLMD prescribed a good substitute. There's borreliosis in the Caribbean, too!
To get sound input before calling your LLMDs office, you could phone a local pharmacist for educated advice at no cost.
Best wishes, Smile
Posted by bncrump (Member # 20374) on :
"Untreated bartonellosis can lead to melanomas."
I have never heard this before. Can you share your source on this? Very interesting.
Thanks.
Posted by Karensky (Member # 21350) on :
I burned badly on Doxy...was working outside in July and I tried
my best to stay out of the sun ( I was told by my doc that Doxy was
sun sensitive ) but I couldn't avoid it entirely...it felt like a chemical
burn...I never want to go through that again...it was painful for a
week at least afterwards...next time I was going to be exposed
to tropical sun , my doc prescribed a different ABX...forget what
it was...but he definately did not want me on Doxy if I was going
to be in the sun again...ask your doc for a substitute
ABX...enough for while you are away...I wouldn't take any
chances...and have fun !
Posted by hopeforhealth (Member # 23673) on :
Thanks everyone, for all the advice. My husband and I have never gone on a honeymoon because I became ill. Put off going for three years hoping I would get better. Then it hit me, I may never get better and if I do we will go again to celebrate.
Thanks for your advice Remember to smile, I was actually hoping to wear a bathing suit (would like to look cute for hubby being our honeymoon and all) so I think the advice of switching meds is probably my best bet.
I am worried about my Dr. getting upset about me wanting to go off meds for a week because I only restarted the stronger meds recently after being on Amox. for a year because of an unplanned pregnancy. I can tell he is starting to feel like my treatment should be ending soon and I know I am not close to recovery. Anyway I'm going to have to be brave and call and ask.
Thanks again
Posted by Remember to Smile (Member # 25481) on :
hope, So glad you & hubby are pursuing your dreams NOW. Then you can have another honeymoon, and another...
You can wear a bathing suit in & around your room and covered patio (for whatever length of time you can keep it on!) and probably at a beach bar or pool bar if there's plenty of deep shade from a roof.
I urge you to stay on abx, even if you're inclined to change meds. Enjoyable travel brings some stressors, too, so be careful to protect yourself from relapse. Backing down your doxy dosing to just 100 mg 2x/day may be safer than no abx. If you poll several pharmacists, you can probably learn which alternate abx are most sun-safe so you can be succinct in a phone consult with your LLMD.
I think it'd be cuter as a mini dress, maybe with a bright Lyme-green sash to pull in the waist? Posted by Remember to Smile (Member # 25481) on :
@ bncrump, My source: A respected ILADS LLMD.
Two additional LLMDs noted the connection between untreated CLD and cancers, citing long-term inflammation as a culprit.
Those were all personal communications.
People I know with untreated bartonellosis who developed malignant melanomas all smoked in their teens & 20s and didn't use adequate sunscreen back then, either. Two have babesiosis, too, but not sure if all had Babs. None followed a gluten-free diet or limited simple sugars. Only one drinks much alcohol.
Since "the powers that be" won't even acknowledge that CLD can cause headaches or body aches, I understand why the cause and cure for cancers remains "unknown" in conventional Western medicine.
Posted by hadlyme (Member # 6364) on :
Sounds like fun Hope... My motto has been, I'm in control of my disease... it doesn't control me. (I work full time and enjoy my pool and life.)
We're all different with how we react in and out of sun, how we react with meds, how we react with life itself.
Stress relief is a perfect idea.
Calling your dr. is a perfect idea.
A week is nothing in your long term treatment plan.
Being happy with that hubby is just as important for your well being.
My bets are that when you dr. knows your reason that you want to switch for a week, he'll give his blessing. It's just a week.
Posted by hopeforhealth (Member # 23673) on :
Thanks everyone, love the sunglasses tunic......looks a little heavy though
I don't want to ruin it for my hubby by having to worry about the sun. I already have a strict diet, can't drink etc. Only thing is I just got worked up to my full dose and leave in 4 weeks. Anyways I have the same feeling as you Hadlyme, I don't think it will make a difference long run. After so many years of heartbreak we need a little fun in the sun! Can't wait!
Posted by Lymetoo (Member # 743) on :
Have a great time!! Posted by Ann in CA (Member # 97) on :
My very well known LLMD has always been very willing to adjust the abx if I have travel plans. After thinking I would never be able to travel again, it was such a relief to tackle an international trip with my husband and have it all be just awesome. My LLMD recently switched abx for me, and since it was back to doxy, he even asked if Hawaii was in the plans. (I wish!)
A number of years ago, while visiting my sister's family in Alaska, I was on high dose doxy, and never really thought about the sun up there as it is often rainy. However I developed what looked like burns on my toes and hands, and then realized I had been wearing sandals in the cool, but sunny weather and it was doxy sunburn. So it is wise to be really careful with doxy.
Also had to have cataract surgery this year in the left eye only (side severely affected by lyme initially) which I feel was probably due to not wearing sunglasses enough in the six years I went undiagnosed.
Have a wonderful trip! (and they do make delicious alcohol free tropical fruit drinks for a special treat)
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