posted
Alright, Well Doc P says that it will be doxy this summer, if not a drug that will stain my skin and teeth. Call me crazy but Doxy sounds fine. Anyway, I would like to take a sun exposure survey. Please anserw systematically the following:
1. Did the sun affect you? 2. If so, what were the side effects? 3. What were the general side effects, besides herxing, of Doxy? 4. Did you ever gain a tolerance to the sun? 5. How do you feel today?
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I burnt my face horribly wearing total-block, and a hat and a scarf. It got infected. It sucked. My nose is scarred.
Nausea unless I eat tons of food.
I was fine in the sun until the second month, so I lost tolerance.
I feel way better than I did 4 months ago, but I have decided that not going out in the daylight is now slowing down my recovery, so I will be switching for the summer.
I would like to add that my teeth have been stained and turned brown in places, so I am not sure about that not staining thing. I did freak out at first because my teeth have always been so white, now I just ignore them.
Posts: 243 | From chicago | Registered: Dec 2005
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LostCityAgent
Unregistered
posted
This is the information that I have on Doxy. and a question addendum. What do you think?
Doxycycline is generally well-tolerated. The most common side effects are diarrhea or loose stools, nausea, abdominal pain, and vomiting. Tetracyclines, such as doxycycline, may cause tooth discoloration if used in persons below 8 years of age. Exaggerated sunburn can occur with tetracyclines; therefore, sunlight should be minimized during treatment.
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Doxy was the first antibiotic I was put on for Lyme treatment. It truly saved my life. I felt like I was about one week from death, deteriorating rapidly. Within about 10 days of being on Doxy, I stabilized and felt like I was rising from the dead.
I was on it several months - a few symptoms went away on it, many had only slight improvements, but it definitely stopped and reversed my downhill slide.
I live in Southern California and started Doxy in the summer, so you can imagine how difficult it was to minimize sun exposure. On top of that, I've always been sun sensitive.
I wore SPF 40 sunblock for even brief trips out in the sun, bought clothing with SPF in it from Sun Precautions catalog, wore a big hat, etc. but it wasn't enough. I had a very bad sun rash on my knuckles, neck and face - the Doxy Knuckles are often from sun exposure during driving.
I had to give in and wear gloves when I went out. Yes, I was hot and uncomfortable - and looked like an idiot - but it was well worth it to me for the relief I got from the Doxy.
I had no major side effects from Doxy until the end when I finally built up a tolerance and got a headache, GI problems and terrible fatigue.
So I had to take a complete break for a couple of weeks before starting another antibiotic to give my body a chance to heal. My LLMD said that people often hit a wall of tolerance after months on Doxy. But aside from that, it was a great blessing for me.
It did take a long time for the sun rashes to fade - long after I was off the drug.
Oh yes, I had to go to the dental hygienist far more often because I got terrible plaque build-up on the inside of my teeth. My LLMD said it was the Doxy.
I'd do it all again in a heartbeat.
Good luck with it.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Lost--
I have been on Doxy for around 2 yrs or so- I have taken almost 4000 of them blue pills- -- Double Ouch--
Doxi has helped me a Bunch --
Some of the things I have learned are--
Cut out ALL Citrus from your diet-- 15 months ago even the Light from my computer screen blistered my skin-- Im not kidding--
I did research on - Photo Toxic - and found some info that citrus can cause this Bad reaction-Quickly-hours- Even Tiny amounts (1-tsp)
At the time I was drinking a gallon of Lemonade or more aday--
I cut out All citrus from my diet- and after about 4 months sun light dose Not burn me Anymore--AAAhhhh
Also you get what is called - -Sun Poisoning-- it WILL make you sick as Hello for a week or so -- So you get Burned to a Crisp- and sick as Hello too --
Your body becomes Alergic to Light-Ouch
I was out in the full Texas sun yesterday for over 8 hours and did not get a sun burn At All --
A little over a year ago doing this would have Killed Me Dead--(KMD) -For Sure --Im not kidding
Even tiny amounts of citrus can cause this bad effect--
Like 5 drops of Grapefruit Seed Extract-- GSE - Hammered me -Ouch Lemon in my tea--Ouch--
Cranberries also cause this bad reaction-
So do yourself a Big Favor and stay away from All citrus and Cranberries--
The scars the burn causes seem to be perminate -- Triple OUCH --
Also read the warnings on the lable about interactions with -vitmians - minerals and Dairy--
These things combine with the doxy and rinders it Useless --
If you are having any side effects look into your diet and see if there is any food that might be causing this reaction ---
Most people dont get the Photo Toxic reaction so I feel diet may have some cause in this -
Doxi has to stay at a constant level in your body for best effect- (This is true for Most if not All ABX-)
So you have to take your meds On Time- dont miss Any doses--Very Important--
I bought a timer that I could set to remind me Take My Meds-- I nicknamed it - MOM --
Its from Medport and cost $10 -- works well and I cant weight to- Smash it With a Big Hammer--(SIWABH)
Drink- LOTS- of water or tea -No Lemon- You have to flush out all the toxins that the dieing germs release--
Your pee is going to Bubble -Now
I find the amount of bubbles are a good indicator of the level of doxi in my system --More Bubblie is Better-(MBB) Your MBB level should be a 8 or 9---
I was Very sick(18yrs) when I first started taking doxy -
My regular doctor gave me whats called the - Standard Dose --200mg aday--
This dose Will kill Most germs- -- Not Lyme --
I made Much More Progress when I upped my dose to 600mg aday--
600mg of Doxy spread threw the day-- seems to be the -Standard Dose- that is thought to be most effective for lyme-- Was for me--
Also I got a Very Bad Burn - just 3 days after starting doxi at the 200mg dose --
I dont think my Photo Toxic reaction was effected much by the dose amount- or length of time I have been taking it --(Im taking it now) NO Problemo --
I also want to warn you that I got a bad batch of doxi from a company -Labled -DAN 5440 on them-
They were Totaly Useless -- And the Relaps they caused Darn Near Killed Me--(DNKM)
My MBB level was ZERO -- If I had not noticed the change and figured out the meds were Bad(useless) I have -- ZERO Doubt I Would Be Dead-(ZDIWBD)
I got a different brand and the relaps stoped and my MBB level went back to normal (1 day)
Seriously-- I had No Idea that I could get that sick and still be Alive-- Scaired the Hello out of me --
So Keep in mind that not all Doxi is created equal--
Also keep in mind that every pill you take gets you closer to the Last One you Have to take--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Doxy is great, but the sun effects are really tough. Doxy was the first drug I was on--stayed on it for 5 months, now I'm off for the summer. Despite a hat, 50 suntan lotion with zinc, clothing, including gloves, my nose and hands got so burnt. My nose is still red--3 months later, and my hands are reddish-purple. Also, the burn caused my fingernails to start to come off; also my toenails. It's annoying and disgusting--you don't realize how much you use your fingernails.
Still, I wouldn't change the fact that I was on it. I think it really helped. I herxed intensely on it. Nausea, debilitating fatigue, weakness, and my nerve pain (one of my main symptoms) went so through the roof that I couldn't walk. But I know I'm on the right track. I would recommend doxy, just BE CAREFUL. Sun sensitivity INCREASES the LONGER you are on it. bsm
Posts: 20 | From Chicago, IL | Registered: Mar 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I tried to take it.
It caused severe nausea and then it just wouldnt stay down. I always vomited it back up
I hope it works for you... Be very careful with the sun.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by LostCityAgent: 1. Did the sun affect you? 2. If so, what were the side effects? 3. What were the general side effects, besides herxing, of Doxy? 4. Did you ever gain a tolerance to the sun? 5. How do you feel today?
Hello, Lost!
1. The sun will fry you silly. 2. You will burn, even THROUGH YOUR FINGERNAILS. It will happen before you can even see it. Then it will be too late. This will give you indescribable nerve pain. 3. Side effects of doxy: Head pain (increased headache), nausea, sometimes for a couple hours after taking -- but you DARE not lie down!!! 4. I did not get any tolerance to the sun, but only stayed on Doxy for 6 weeks, then begged for mercy. 5. Do I feel good? Well, better. I think doxy knocked down a serious bacterial load; most do a round of it in the beginning of treatment for just that reason. Plus, it may kill erhlichia and a few other nasty critters. Most LLMD's put you on it initially.
Good luck, Lost!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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WildCondor
Unregistered
posted
Hi there,
You can do a search and look upother posts on the same topic for more information.
Doxycycline can cause severe and very rapid sunburn. It happened to me in 5 minutes of sun exposure kayaking on a lake, just on my hands. the burn was very painful, tingling, numbness and lasted for days. I couldn't wash dishes because of the burning hands. Sunblock SPF 55 plus fully covered up body is essential. Even then, you can burn through your clothes. Everybody is different but dont do anything stupid like lie out in the sun or go to the beach. Why not ask for a different drug for the summer? Did you already do that? What dose are you going to take? make sure the dose is adequate, meaning 400 mg and up daily for Lyme disease.
Make sure when you take it you eat a full meal, then take the Doxy, then eat more. Do not lie down after taking it, or the nausea will be worse.
You do not gain tolerance to the sun, the sun sensitizing effect is always there. Your doctor should have explained this to you! The herxing was normal for me on Doxy. Side effects were nausea and heartburn, GI rumblings and the sunburn.
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LostCityAgent
Unregistered
posted
Due to my spine lesions Doctor P does not want to put me on anything else. This burning stuff sounds severe. Does this mean that I cannot go outside in the light of day? If this is the case then I am not taking drugs at all! I would rather be in a wheel chair. And, I am not taking the drug that will stain my skin and teeth. Forgive me for caring about my appearance but I am only 27!
Forget this! My doctor said nothing of the sort, he said that doxy did not affect him in the sun at all. He never said, that it could be this bad.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
1. Did the sun affect you? Yes 2. If so, what were the side effects? Sunburn & skin black spot on forearm cancer? 3. What were the general side effects, besides herxing, of Doxy? Drink lots of water with each dose or youll get sick in stomach quizieness passes in a week or so. 4. Did you ever gain a tolerance to the sun?NO 5. How do you feel today?Good no sun problems.
-------------------- 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.
posted
I took if for 1.5 weeks and couldn't handle it. My skin fried in fall with full block on . . .
Posts: 60 | From Ohio | Registered: Sep 2003
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
when i used a lot of block and didn't ever sit in direct sunlight, i was okay. i don't think i ever developed a tolerance, but i never totally fried either.
not looking forward to driving in a car with no air conditioning with my left arm down IN THE CAR
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
1. Did the sun affect you? A little bit. 2. If so, what were the side effects? Some sensitivity to the sun and easy sunburn. 3. What were the general side effects, besides herxing, of Doxy? None, easy for me to tolerate. 4. Did you ever gain a tolerance to the sun? It's not too bad for me as is but it never has changed. 5. How do you feel today? Anways making progress. I've been on Doxy for ~ 7 months.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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LostCityAgent
Unregistered
posted
I am half Hawaiian, do do you think that this will help at all?
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Doc just put me back on Doxy. Ive taken it in the past with no HERX or success.
This time around I herxed BAD after 4 days. I was in soo much pain and depression. Then my head was clearer and I wasisnt in pain.!
First time in a year that I was without pain in my body. Damn this lyme. ()
Ive been on it for a month now on and off.
I herx after I take it, then I feel better about 14 hours and lots of water later. My pain goes down and my head clears.
Then the symptoms come back hard.
I dont think im sensitive to the sun. I have seemed to get some color.
I went out in the sun talking to a friend for 25 minutes in the bright sun and nothing happened other then some color.
Im only taking 100 mg though. SO I will monitor closelly once we get higher.
But IM still herxing on 100mg. After I take a capsule about 1 1/2 hours later I feel like someone is taking a branding iron and putting it on the bone in my neck. My hands get stiff, I get depressed, my feet burn and my back hurts!!!
Back pain was an old symptom. Seemed to come back now.
Also my sinuses feel stuffy when I herx on it.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I asked a co-worker and she said she had lyme 2 years ago and she was on DOXY for 3 months.
Went out in the summer and she was fine. When I said that Im worried about sunburn she laughed at me.
I also asked the pharmacist. He said that he has never hear of ANYONE being severelly burned from the doxy. He is also an older gentleman.
He said that it probablly was a problem years ago because they didnt have adequate sunblock.
So what do you think of this?
I thought for sure I was gonna fry the other day. Nothing happened.
From what I understand though, one can be fine for a while and then bamm their hit with bad sunburn.
I also read on one site they said to take the doxy at night.
The literatre on the web says that doxy has a low probability of causeing phototoxicity.
4% I believe. So damn if I know why most of the people here were affected so severelly.
I dont like sunburn one bit and have not had it in years because I take precautions like wearning sunblock.
Now with he doxy, I dont know. What I do know is that by pulsing it the way I have been doing I have gotten some color in my face and hands allready.
The LLMD by the way said that people do have problems with the sun on it.
He told me to buy a mexican hat!!!!!!!!!!!!!!
Then again I was scared as hell to take Flagyl after reading some peoples posts on this board thinking that I was going to visit a nice warm hell after taking it.
None of that happened with the flagyl. All it did was clear up my bowels.
Science still doesnt know enough to explain all the factors in photoxicity and drugs.
Definitelly if you are light skinned you will burn more easily on the doxy.
Posts: 2905 | From New England | Registered: Sep 2004
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Doxy effectiveness is dose dependant so any improvement or reactions depend on how much od doxy was taken.
Above I don't see many people saying how much of doxy they had taken.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
The doxy stays in the skin and aborbs uva radiation from the sun which it releases very slowlly.
Doxy was used at one point in bone surgery. Doxy would be given to the patient a couple of weeks before surgery.
When the surgeons cut them open, they would shine a Ultraviolet light on the bone and the living tissue would glow.
So this means that the doxy itself absorbs radiation and glows.
[ 03. May 2006, 08:00 PM: Message edited by: lymeHerx001 ]
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I'd say three months doxy saved my job, maybe my life. 300, 400 and 500 mg/day then I hit a plateau and begged for a change.
The sun is murder and it was last summer, so that was a bummer. Tough vacationing to the beach with three kids to entertain. The skin under my nails burned and took a long time to heal.
My teeth stained, but the hygentist cleaned it right off after I changed regimens. It is murder on an empty stomach...I picked up a few pounds I am still carrying.
All and all though, doxy did the trick, and helped confirm the clinical lyme diagnosis because at higher dosages it penetrates the CNS. Its just tough to tolerate.
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
So all but one has had sun sensitivity, and the other had sensitivity and then omitted citrus and then that cleared up?
Very interesting guys.
Im still searching and wondering myself.
Summers commin! Paste on the sunblock.
Posts: 2905 | From New England | Registered: Sep 2004
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WildCondor
Unregistered
posted
Everybody is different when they take this. Some of us burn really easily and some of us very little. You can go out with clothes on and SPF 55 and see how you do. Just be careful! treatment is definetly worth it, and you have to be willing to do what your doctor says, and stay on course. being part Hawaian I would think that would help you, just try the meds and see how you do.
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posted
HI I am loving doxy! I'm taking iv, pulsing 400 mg/ day 4 days on 3 off. I'm definitely herxing, but getting noticably more strength, and coordination.
I tried oral doxy at the beginning of my treatment, and I couldn't tolerate it, Gi distress that didn't let up until I stopped taking it.
So far, 6 weeks, I haven't had any notiable sun sensitivity. I do not eat citrus or cranberry and eat little fruit in general beacause of sugars. I have gotten color in the sun, but no burning..thank God.
I took tetracycline years ago for ache, and had a protocal to avoid burning as much as possible but still care for my young children. I did burn some then, but I also ate much fruit, and drank OJ daily....
So, add this to the collection of info.
Posts: 663 | From NH USA | Registered: Sep 2004
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david1097
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Member # 3662
posted
I was on IV doxy all last summer. The dose was equivalemt to something like 1 gm of orals a day.
I survived with only burned hands. During that time I was outside every weekend and was at the beach, in the water fro almost a week. The trick is to wear some light clothes and get a nice hat.
The lips can get burn't from reflection from the ground so you need to get some sunscreen that works for this. I found the best stuff for the hands and lips was this stuff in a lipstick like tube. I forget the name but I think it had something to do with frogs. I will try to find it and repost here. The stuff worked far better than the stuff in the bottles.
The make of sunscreen also seems to have different effects. Some are useless, others are pretty good.
The first burn is the worse since you don't fee it coming. After that the next go around is not to bad.
The hands can get pretty scared up from the burns but it goes away after a while.
Posts: 1184 | From north america | Registered: Feb 2003
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bettyg
Unregistered
posted
1. Did the sun affect you? YES
2. If so, what were the side effects?
I NEED TO WEAR EXTREMELY DARK RX SUNGLASSES WITH THE NOIR, no infrared SUNGLASSES OVER THEM PLUS MY floppy hat over both sets of glasses. I sunburn very easily & quickly.
3. What were the general side effects, besides herxing, of Doxy? it fatigues me, and I'm more tempermental!
4. Did you ever gain a tolerance to the sun? NO
5. How do you feel today? Same as no. 1; with doxy, my super sensitive eyes already became 200% WORSE.
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LostCityAgent
Unregistered
posted
THANK YOU ALL, Another question. I have multiple brain lesions that meet criteria suspicious of MS, 5 are enhanced. I have non active lesions in the cervical spine. I have 1 band that tests positive for Lyme and my Lyme MD says that I have Lyme. I believe him, but always am curious. My question is: If I do not herx, does this mean that I do not have Lyme ?
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
took me 3 drugs untill I herxed.
Didnt believe the doc until I did.
Might wanna start a new thread for this one PLEASE>
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
also the first time on doxy for one month I did not herx.
Not untill I took flagyl till I herxed on the doxy.
Flagyl makes them more suseptibe to the doxy.
I was on plaquenil to, that is a cyst popper also but not as good as flagyl.
Maybee you should look into flagyl if you dont herx, try them both.
I had only minor side effects from flagyl. I liked the flagyl because it cleaned up my bowels. Other people on this board had major side effects.
Posts: 2905 | From New England | Registered: Sep 2004
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