Topic: Doxy and Sun Sensitivity--should I wait until after the summer?
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I just found out yesterday that I still have Ehrlichia/Anaplasma. The treatment for that is doxycycline for a while; the dr rx'd 200 mg twice a day.
I want to deal with it ASAP, as I'm doing terribly (due to no treatment for Lyme for quite a while, and other co-infections, too). But I'm leary about taking doxy during the summer, due to sun sensitivity reactions that I might get.
I know I"ve asked about this before. It's a tough issue to decide about. I hardly ever get any sun as it is (I live in a big city), and I have to be careful about sun, as I am very fair and have had skin cancer already.
BUT, I want to get some sun this summer, and am going to be away in the country a lot, starting this weekend. ANd I'm still really low on vit. D, in spite of a lot of supplementation, so it would be good to get some sun, albeit carefully.
Errgh! Any feedback? I don't know whether to wait until after the summer to treat it or what? I took doxy last summer after getting bitten again, and had to live like a mole, not going out in the light of day much at all---not good!
I know some people don't have the sun sensitivity reactions, but one wouldn't know until you had a reaction, and it sounds so extreme! People say they get terrible blisters just from driving in winter!
In addition, I'm afraid that I'll be hit with horrific migraines from the doxy from increased intracranial hypertension. I had daily migraines from doxy at 1/2 dose last year! (Sorry for the long post!).
Posts: 3771 | From around | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Infection is one cause of intracranial hypertension. If you get worse when on Rx, be sure to ask your doctor for support supplement advice. Your liver may need more support to get the toxins moving out better.
It's been a while but I had to take 600 mg a day of doxy when treating ehrlichia. Hmmmm. You said you are taking 400 mg. that may have changed but you may want to check Dr. B's guidelines.
I assume you've asked your LLMD is there is any other Rx that would work. Maybe minocycline?
Basic question, though: "Whether to wait until after the summer to treat it or what?"
Well, it could be too late by then. Seriously. There is nothing more serious or important than treating life-threatening infections. I know you've been dealing with this a while but treating this needs to take front seat.
Life is more important than getting some sun. When on doxy, it is necessary to stay out of the sun but the Vitamin D supplements will just have to do.
You can also go to where their is no sun shining on you and get day light into your eyes. While that may not help specifically with vitamin D, it does have some tremendous advantages for your immune system. Just daylight into eyes with no glass, no eyeglasses or contact. First thing in the morning is best.
I do hope you find another Rx that will work so that you can get some sun. But, if it's between guarding your life and getting sun, the decision becomes clearer. Maybe sitting where you can see sun and trees, etc. but not be exposed will serve to at least brighten your day if not your skin.
Good luck.
================
Dr. B's guidelines have changed since I treated Ehrlichia. See page 24 of the 2008 edition:
Standard treatment consists of Doxycycline, 200 mg daily for two to four weeks. Higher doses, parenteral therapy, and longer treatment durations may be needed based on the duration and severity of illness, and whether immune defects or extreme age is present.
However, there are reports of treatment failure even when higher doses and long duration treatment with doxycycline is given. In such cases, consideration may be given for adding rifampin, 600 mg daily, to the regimen. . . .
==========
Of course, that set of guidelines is not written in stone and there are others who have written on the matter but it's a good place to begin. -
[ 07-02-2010, 02:08 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have done doxy 2 summers in a row now. Not 400mg though. I am on low dose doxy since I am taking it longterm.
When I go outside for more than 10 minutes I wear sunscreen, long sleeves, long pants, and a big hat. It hasn't been a problem for me. I have even gone to the beach, but only stayed 20 or 30 minutes at a time.
Getting well is worth a little trouble......thats the way I look at it.
I am on prescription vitamin D also!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I'm in the country by a lake this weekend and will be next weekend. I sooo rarely get out of the city or even get out of the house. Since I've spent years in the city and indoors . . . I just hate to live like a mole yet again.
Sigh, what a dilemma. When I do do the doxy, I know that I will have horrible daily migraines again, too (which I'm having a lot of the time now anyway).
I just swam today in the lake, and it was wonderful! No way could I do that with doxy, as it was really sunny. I have next to no pleasure or exercise, so this was so important. Well, the doxy is soon coming.
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I was on doxy for 2 months. My ehrlichia test came back positive for a past infection?!? But anyway, I'm off of it now because I work outside a lot during the summer. The first month I was on doxy I got it bad. My hands and arms were horribly burnt. It would hurt like heck if my hands touched anything-lightly or not.
The second month wasn't as bad as I stopped for 2 weeks in between. I've read somewhere that sometimes stopping and starting again makes it better. The only burn I got was on my hands and it wasn't nearly as bad as the first time.
But since then I have asked to switch abx. My doctor complied. I can't worry about getting burnt when we are painting an outside. I need to focus on work or I'll forget something or get dizzy and fall off a ladder. I must concentrate A LOT while I'm at work.
I know how you feel though. If it wasn't for work my second reason for not wanting to be on the doxy during the summer is we spend about every weekend at the beach going fishing. We love to go fishing, my husband loves it and our kids love it.
I understand your life being more important that going out in the sun but I also feel like if I'm stuck in the house while my whole family is out on the beach fishing I'm going to get pretty depressed pretty quickly. So I get both sides, I really do.
I don't know of any other drug that treats Ehrlichia but I'm sure there might be something else so ask your LLMD.
posted
I am in Florida and hid my first summer on Doxy. I even got burnt driving in the car. I was up to 400 mg of doxy a day.
The second summer, I decided I wasn't going to do that again. I had been on doxy a year and I was over it during the summer. Tanning makes me feel better.
But, it was an easy decision for me because the first year of doxy didn't help much. But, it has for others, so it truly depends on what is most important to you.
Posts: 893 | From Florida | Registered: Dec 2008
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posted
I would definitely NOT WAIT. Doxy and sun never bothered me, but you can always try Minocycline, which is more effective and has less sun side effects.
Posts: 770 | From USA | Registered: Jul 2006
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posted
I would ask your LLMD how many of your symptoms are coming from erlichia. If it's a significant portion, I'd take it; if not, then I'd wait.
There is a cost/benefit to avoiding the sun. You need to figure out if the cost is worth the benefit.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I didn't have a big problem with the sun on Doxy. I took precautions, but could be outside for 10 min or so without issue. I'm on Biaxin and Amantadine for the summer.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Tough decision Rumigirl. You might be OK since you don't regularly spend a lot of time in the direct sun. Sunscreen might be enough to protect you for everyday in and out sun exposure. When you do want to spend more time outside you could take extra precautions like hat, sunglasses, lightweight long sleeve shirt and long pants, etc.
You can get aerosol spray sunscreens that go on easily and absorb well into your skin. They don't leave a smelly oily film like many lotions do. I like the sprays but they are very costly and the bottles do not last as long as lotion.
I've been using Coppertone Waterbabies "Pure and Simple" spf 50. It is "oil, fragrance, and dye free". It goes on thick but soaks in well. It is not oily or smelly. I use it daily (because I'm super fair and burn easily without it).
If you are interested there is a website that ranks sunscreens by safety and effectiveness. The Coppertone Waterbabies "pure and simple" was the best one I could find for a decent price at my local store.
Take care Rumigirl. I hope that the doxy helps you feel significantly better Posts: 5237 | From here | Registered: Nov 2007
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Rumigirl
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Member # 15091
posted
Errrgh! Well, I went swimming twice on the 4th, and once today, and it was super sunny. No way could I do that on doxy. I don't think there is anything else that gets Ehrlichia. I was on it twice before, but only at 100 mg BID, and got daily migraines from it the first time (It increases intracranial hypertension).
And I can't tolerate mino, due to really bad side-effects (getting dizzy, no balance, feeling drunk, terrible daily migraines within minutes of taking the mino).
Yeah, I need to figure out which sxs are from Ehrlichia vs the other infections. Because I'm feeling truly terrible, and I have been off tx for everything for close to a year! That's not at all my choice. I've gone through a horrible time with a string of tx problems, and my LLMD wouldn't put me back on IV.
Now I'm onto two new LLMD's (one a neuro). Still waiting for tx and umpteen test results : - ( Thanks, guys.
I get so little pleasure and anything even vaguely resembling a normal life. If I can get just a little of what I love: being outside, swimming, etc., it makes a big difference! Oh, to be normal and healthy! I spent last summer not going outside, due to doxy.
Posts: 3771 | From around | Registered: Mar 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All --
Rumi-- If you are just going to put off taking doxi for 2 weeks - then I would wait till you get back from your trip -
You have been on LN since 2008 so you are long past the Golden 4 weeks where delayed treatment would make a difference -
Having some Fun is Important for mind and body-- So Have some Fun --
Minocycline dose not cause the Photo Toxic reaction even close to what Doxi can cause -
Google -- Photo Toxic ( PT )--
Citrus even in Tiny amounts can make the Photo Toxic reaction 100 times worse- So Dont eat Any citrus--
I had the PT reaction about as bad as it can get --even the light from my computer screen would burn my skin--
You do not want to go there -- It was Hell--
After I finally figured out about Not eating citrus while taking Doxi --I was able to go out into the hot Texas sun with little problem --
So Do a Back Flip into the pool for me--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Hmmm, thank you, Jay, for reminding me about the citrus/Photo Toxic effect. I forgot about that.
Mino isn't a very good option for me, though, as I had extreme side-effects within minutes of taking that last year (migraines, no balance, almost falling, feeling drunk, etc.---all within minutes; it is a side-effect of the med).
Posts: 3771 | From around | Registered: Mar 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Can you tolerate Tetracycline itself? A friend of mine was put on it b/c he works outside a lot; his doc implied in order of sun tolerance, from worst to best: doxy, mino, tetra.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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