Hello I am currently on 100mg doxy twice a day for disseminated disease. 3 week prescription.
Looking at Burrasconi's guidelines I was going to ask my primary care to up my dose and stay on longer. I'm a little concerned about side effects...
Any advice / stories?
THANKS!
Posted by NanaDubo (Member # 14794) on :
For Lyme and co, 100mg doxy is low. The experience I had on doxy was that it brought out the co-infections I had.
Not pleasant but good to find out about.
Also, sun is a big no, no on doxy.
Posted by amye (Member # 16052) on :
sounds like the dose is a little low. my dtr is 9 and was started on doxy 100mg 2xday for 3 weeks also. she never burns and was in the sun yesterday with tons of sunscreen and still got a little burned on her face. luckily not too bad. also terrible abd pain and nausea after taking it. she needs to take it with food to prevent this.
Posted by onthemend (Member # 13454) on :
I did 400 mgs daily for 14 months. I was able to tolerate it well in terms of stomach/yeast/nausea, etc. Every now and then I would feel a bit sick, nothing that I couldn't tolerate or handle. After about 12 months it started disagreeing a bit more with my stomach, so I went to doryx (still doxy, but diff compound?). That was definitely easier on the stomach, so keep it in mind as an option.
For me, 400 mgs was the key to getting better. I started at 200, moved to 300, and settled at 400. The sun sensitivity was absolutely horrible for me (but the increased wellness was worth it, believe me!). I was extremely, extremely vigilant and careful about sun exposure, but I still had some bad reactions.
After two sunless summers, I asked my doc for a substitute this summer, just so that I could have a more active/normal life with my 10 year old son. I'm taking mino instead, which has helped enormously with the sun sensitivity, but I have to say I don't think it is working as well on my Lyme.
Best -
OTM
Posted by barton35 (Member # 16244) on :
thank you all so much for replying
After listening to you I am inclined to ask for higher dose - maybe start and 300, then 400? But unsure about how long to stay on.
Or whether to try tetracycline instead.
Did/does your tongue or throat every feel weird/tight on doxy?
i believe I have relatively early disseminated disease. i came down with acute symptoms (fever, chills, multiple rashes - 8, 9, 10, non-bullseye, non itchy circular), stiff neck, fatigue, spacey.
My IgM and IgG showed active Lyme.
i hope this is early and not just a manifestation of something that has been with me a while.
I feel like my current primary care doc knows about as much as I do (was diagnosed in the ER)
THANKS!!!
Posted by Ann in CA (Member # 97) on :
The sun was a big factor when I was on 400mg doxy. Since I had little problem at lower doses, I got a bit careless while we were visiting in Alaska, and got really bad sunburn on my face, toenails (never thought about wearing sandals up there) and hands.
Toward the end my stomach and mouth suffered also, but that was before I knew about Theralac, which probably would have helped.
Also, I would be really vigilant about wearing sunglasses. I now have a cataract in one eye (the eye which was on the side where the bite was and which was most affected) and while it may be the cumulative effects of all the different abx, I think the high dose doxy could have been a major contributor.
PS I have been off all abx for 3 months now, and my LLMD thinks this may be the real thing. This is not my first time off abx, but I am sncouraged by the fact that the other times, the symptoms returned within a month.
Best wishes.
Ann
Posted by pamoisondelune (Member # 11846) on :
Doxy at 400 mg perday was my first lyme drug. After a couple of weeks i got an increasing rash on the neck area, thought it was an allergy reaction, and was taken off doxy. When i saw my first LLMD a week later, he said it was bacteria die-off in the skin.
He was glad i'd had the higher ILADS dose at 400 mg per day. I have the impression that a lower dose is not considered effective for lyme.
Posted by princesslee (Member # 12141) on :
pamoisondelune,
Glad you posted this reaction. I've been on 200mg a day for months and just realized from reading multiple posts, that will only keep my lyme at bay.
I decided to increase my dosage to 400 mg while waiting for my doc to call back about doing it for me, and low and behold...I have broken out in a rash all over my face, neck and hands.
I knew I wasn't allergic (or at least probably not since I've been on it so long), so thanks for posting this info...very helpful to me!!
Also, I am going to INSIST my doc increase my dosage!
Take care. Posted by barton35 (Member # 16244) on :
how long after upping your dose did you get the rash? how are you now?
Posted by groovy2 (Member # 6304) on :
Hi Barton-
200mg a day is called the Standard Dose- this dose is what Doxi has been tested at-
This dose will kill most germs but is Not effective for Lyme- just ****es it off -
when I first started treatment I was on the standard dose- Not much happened-
When I went on 400 to 600mg a day things started to happen for the better -
Low dose will also make the germs resistant to the doxi -not a good thing -
Doxi can cause sun burn problems Do Not eat any type of Citrus or cranberries even Small amounts can cause the sun effect to be a 100 times worse on some people - Lemon in tea ect-
I got Toasted the 3rd day on Doxi- you dont want this to happen to you--
Now after cutting ALL citrus from my diet I have perty much Zero sun burn problem -Jay-
Posted by princesslee (Member # 12141) on :
I got the rash only after about a day and a half.
I called my doc and he did agree to up the dosage based on my rash being a herx reation.
I have been feeling reeeaaalllly bad these past couple of weeks, but I do believe it's due to herxing.
I'm hanging in and hoping for the best! The best I ever felt was when a previous LLMD put me on 200 mg of doxy in addition to zithromax once a day.
It took 8 months, but I was finally pain free!! I only had residual memory issues. Then, he dropped all his lyme patients do to pressures form the medical boards, and I crashed.
[ 28. July 2008, 01:11 PM: Message edited by: princesslee ]
Posted by CherylSue (Member # 13077) on :
100Mg BID is not enough. I did the best on 200 BID and it cleared by my brain fog. However, it get me so far. I've moved on to other ABx. Watch out for the sun!
CherylSue
Posted by adamm (Member # 11910) on :
No real side effects from the doxy.
Posted by mark palus (Member # 15867) on :
I was diagnosed by a former president of ILADS with early lyme (no coinfections) and started taking 200 mg of Doxy twice a day while I still had my rash.
95% of my symptoms were gone in 5 days and I think 100% gone in 3 weeks. I am 2 days short of finishing my 6 week program and feel fine.
Try to avoid dairy 2 hours +/- of taking the doxy and remember to take a probiotic - also not around the time of Doxy intake. Most on this site take a lot more but I took 10-14 billion units/day and that seemed to be enough.
I had no stomach/yeast problems. Got a little nauseaous twice when I took it first thing in the morning on a very empty stomach. Found oatmeal to be a good base in the stomach for breakfast.
I avoided the sun and used sunscreen when I was out. Forgot it one time and got weird sunburn/sun poisoning but only on my knuckles and the side of one of my hands. Itched a little, felt very strange and lasted about two weeks...odd sensation. I am pretty fair skinned and that was the only problem I had.
Good Luck and just remember to be diligiant about your doses - try not to miss any. It is important to maintain a steady concetration of it in your body.
Posted by Cass A (Member # 11134) on :
I have long-term Lyme, and was taking 400 mg a day for about a month earlier this year. Unfortunately, I developed a hearing loss that didn't go away, so I stopped it. My hearing returned, I'm pleased to say, to a bit lower level than my hearing test of one year ago.
Best,
Cass A
Posted by bettyg (Member # 6147) on :
doxy,
made my eyes even MORE SUPER SENSITIVE BEFORE ...LIGHTS, GLARE, AND REFLECTION was like looking directly at the sun 24/7.
see my newbie package ... sun sensitivities and read about NOIR, no infrared sunglasses ...wraparounds ... i'd be lost without my 2 with different levels letting light in.
i like things pitch dark! my screen is on 0 for contrast/brightness!
Posted by rachellemarie (Member # 16419) on :
Good to know that 100mg twice a day is too low. That is what I'm currently taking and am going to call my dr. about uping it. I don't want to sit here and waste my time if the dose is too low.
Thanks thanks for the info re: doxy and sun exposure. I didn't know that and was laying out at my pool yesterday, and I live in Arizona!
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