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» LymeNet Flash » Questions and Discussion » Medical Questions » Newbie fears - I'm freakin' out!! Ideas???

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Author Topic: Newbie fears - I'm freakin' out!! Ideas???
castrong
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I am a newcomer to this board but I have been reading and learning and everyone seems to be knoeleegeable about symptoms and treatments. I developed the bulls eye rash 6 weeks ago. My GP Dr. diagnosed Lymes after seeing the rash. She prescribed doxycycline 200mg/day, but after 16 days (and by then I'd gotten myself in to see an LLMD) I was taken off the doxy because I had such an intense sensitivity to the sun - I burned just walking to the mailbox. I then started taking 1000mg/day of Biaxin XL. While on the doxy, I was having tingling in my hands and feet and basically just feeling out of sorts. Immediately after I started taking the Biaxin, I felt totally back to normal - no twitches, tingles or anything. Has anyone been on Biaxin? I'm just hoping it is working as I haven't seen any posts that anyone has been just on that.

To add to my problems and why I am freaking out....... I have developed a nasty rash on my arms, hands and portions of my feet that had gotten sunburned. The sunburn has finally faded (that has taken 2 weeks just be itself) but I am left with this awful red, raised, bumpy rash everywhere that I had been sunburned. Has anyone else had this reaction to the sun after taking doxycycline? I'm wondering if that is normal or if I have a co-infection. My LLMD doesn't want to test for any of the co-infections yet because she says it is still too soon after being bitten to guarantee a decent chance of getting a positive, but she said she thought it may be a co-inf.

Ok - and the biggie today is.......I got bit by another tick today!!! I never saw the first tick, but this one I did. He had a good hold on me and he had been eating awhile. I suspected right away that he might be a dear tick because even being engorged, he was still a tiny little thing. I packaged him up and sent him to IGeneX this morning and now will wait to see what other things I might be in store for.

(Whew) I'm sorry this is so long-winded but I guess I just finally hit the breaking point where I needed to get some ideas and support for what is happening.

I guess my questions are: Is Biaxin a good Abx for treatment? And Should I pursue this rash with the LLMD before my appt in 30 days?


Posts: 19 | From Millersville, MD | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
trails
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Holy crap is it raining over there!

First-I had that rash after sun exposure on Minocycline---I am different than others, I get the sun thing on Mino, not Doxy. IT was AWFUL! It took a very long time to go away. I put aloe on it and calamine etc. It was sooooo hurtful and burny. (like that word?)

But now I am worried like you are with the recent post about rocky mountain spotted fever....is the rash ONLY where you were burned. I mean, is there a direct connection? Or better yet, when did you get the rash in relationship to the recent tick bite?

Can you call LLMD and report what is up and have them tell you if you need an appoint?

I would say LLMD right away b/c with the new tick bite, who knows??!!! right?

Anyone else wanna help here?
Trails


Posts: 1950 | From New Mexico | Registered: Sep 2001  |  IP: Logged | Report this post to a Moderator
Michelle M
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Hi Castrong, welcome to the Board, though sorry you gotta be here. Glad you found yourself an LLMD as your Doxy dose was pretty low!

I am on Doxy also, though twice as much, till my next LLMD appt when I'm s'posed to go on IV.

I've heard Biaxin is a good thing.

Just wanted to let you know that I experienced a bad Doxy+sun thing this past weekend. Fished about four hours -- thought I was wise, covered up with hat, sunscreen, glasses, long sleeves, hid in shade, and STILL GOT MICROWAVED. Fingers and hands and knuckles swelled like sausages. Could not use my hands for several days. Excruciating. Everywhere that burned now has red rash-like dots.

What's really disgusting is my lips look like I've one giant continuous fever blister.

It's beginning to make an IV sound good.

As recent as your bite was, I would STILL call your LLMD and report your rash, just to be on the safe side...

:-)

Michelle


Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
trails
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Michelle is so much more calm than me. I am having a crazy day and much stress in my own life is leaking out here, so I should apologize.

Didnt mean to inflame the situation.

Being my paranoid self, sorry cast!

Trails


Posts: 1950 | From New Mexico | Registered: Sep 2001  |  IP: Logged | Report this post to a Moderator
castrong
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Thanks so much for the replies. I am somewhat relieved to hear about your sun rash Michelle, tho' sorry that you got it too. That is exactly how my hands look.....little sausages with really bad prickly heat rash and/or eczema all over them.

The rash on my arms is more spaced out then on my hands so you can see more individual bumps. Mine hurt really bad also at first for about a week after I got sunburned, but after the red color of the burn started fading that is when you could see the rash. I was worried about Rocky Mountain Spotted Fever......my hands and forearms look just like the pictures they show of RMSF, but I only have it where I had sunburn, so I'm not thinking it is really that....but with my current luck - who knows!! I am supposed to be tested for co-infections this Fri by LabCorp. LLMD decided to use them first so insurance might pay and maybe it will even show something positive. Otherwise, supposed to have IGeneX testing in another month after LLMD feels that there might be enough antibodies present to warrant the cost and not just be throwing away the money too soon.

What a sorry day I am having! I have a red mark about the size of a dime where I found that darn tick this morning. Not sure I have ever been bit by a tick before this recent stuff, so I don't know whether the normal (?) uninfected tick makes the same mark after they bite.

So glad I found this site......I think I'm going to be asking lots of questions!


Posts: 19 | From Millersville, MD | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
janet thomas
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1- Stay out of tick habitat,

2- Dr J B does not think Biaxin is particularily good for treatment but does like it as a maintainance drug. You can see his presentation if you purchase the video/dvd from the LDA of sePA at www.lymepa.org.


Posts: 2001 | From NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
castrong
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Janet:
Thanks for your reply. As far as your #1 suggestion....I'm obviously not staying away from the the ticks are living - with 2 bites in 6 weeks!

It is so hard tho - I live in a suburban neighborhood - all grass lawns, no wooded areas - but I do like to get out and weed my flower beds tho and that is the only place I can think of that I'm getting the bites from.

I was afraid Biaxin might not be the best drug. Hopefully, my LLMD knows what she is doing.


Posts: 19 | From Millersville, MD | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
trails
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Soooo glad the rash is only related to burn.

That doxy burn is so intense. I have been recently writing about how I had to wear my friends tube socks on my hands coz of the sun coming thru the windshiled when I was traveling from Maine to New Mexico. and then I had to give my money for the toll takers with my tube socked hands!

It was very painful and to this day (4 years later) I can not drive without my little ladies cotton gloves on. I even wear them when I am swimming and surfing. (with the fingers cut off) I highly suggest this, as the sun in the car is INTENSE!!

Someone recently posted about citrus juice making this symptom worse. Maybe do a search and see what you can find. Good luck.

Oh, and two months after the rash, I had BIZARRE fingernail symptoms...stripes and colors and things. Turns out fingernails really mark trauma in your body. Heart attack vicitms show things in their fingernails a month or two later too!
Just be aware that it may happen. DONT FREAK OUT!! Like I did earlier today.

Trails


Posts: 1950 | From New Mexico | Registered: Sep 2001  |  IP: Logged | Report this post to a Moderator
Lymied
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Castrong -

Sorry you are going through all this.

Just wanted to add that tingling in your hands from doxy and feeling out of sorts was probably herxing, a product of the bacterial die off. It may be targeting the strain of lyme you have better then the biaxin thus the herx reaction.

When I was first sick I couldn't take 200 mg of doxy without being left literally so sick with neurological issues I couldn't drive. Now, that the bacterial load is down it is not bad and the herxes are much milder on the doxy and I can increase my dose even.

As far as depending on LabCorp for true readings on the coinfections I wouldn't depend on them. I was negative through them and then went through IgeneX and was extremely positive.

I would go through IgeneX for coinfection testing. You don't want to be treating forever and then find out the reason you are not getting well is that you have Babesia. Not to scare you just something to seriously consider.

Take care and I hope that burn is relieved soon.

------------------
"If I can stop one/Heart from breaking/I shall not live in vain/If I can ease one Life the Aching/Or cool one Pain/Or help one fainting Robin/Unto his Nest again/I Shall not live in Vain." Emily Dickinson

[This message has been edited by Lymied (edited 16 June 2005).]


Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
castrong
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I also thought my symptoms may be herxing because I had read so much about that on this site. So that didn't bother me too much, every time my hands tingled I just thought "another one bites the dust!" But now, that is why I am kind of worried because when I stopped the doxy, because of the sun sensitivity, and started taking Biaxin, all the tingling and related stuff I was going through virtually stopped overnight. So, now I wonder - did I stop eliminating the little critters? If so, I would consider going back on doxy and just staying indoors for awhile.
Posts: 19 | From Millersville, MD | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
groovy2
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Hi castrong
I had the doxi burn thing also-
-for 2 years I could not go out
side in day time at all--

Its called- Photo Toxic- google it.
After doing some research I found that
--Citrus can cause bad reactions with
doxi--
I was drinking alot of lemonade--
So I quit drinking lemonade and the
sun burn thing went away--It took
3 months --but now I can go out side
and not get burned at all--
Citrus may also have same effect
with minocycline but dont know for sure.
Do a search on my past posts for more
info--Hope this helps--Jay--


Posts: 2999 | From Austin tx USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
TheCrimeOfLyme
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One of the warnings doxycyline comes with is to avoid the sun. Reason being is what someone else mentioned: phototoxic reactions.

It is very normal to burn and/or fry in the prescense of the sun while under doxy. Im one of the rare ones who don't. I could stay in teh sun all day while I was on it and not get burnt.

I took Biaxin XL for lyme, which is slightly different than straight Biaxin, and it damn near put me in remission.

Regardless of what Dr. B says, if it is working for you, GO FOR IT. It absolutely DOES work for some people.



Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
castrong
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Thanks Groovy2. I'm working on the healthy diet part of my treatment - I've never been much on citrus so that probably wasn't the culprit for me but I really appreciate the info on googling "phototoxic". I found a great site with a list of things to avoid which I thought might be helpful to someone else. The fact that certain sunscreens actually increase the problem was a big surprise to me.
http://www.fpnotebook.com/DER194.htm


Posts: 19 | From Millersville, MD | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
mikken
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castrong,

You have to find the abx that works for you! My mom (the resident Lymie) was on a combo of biaxin and doxy for a long time (zithro and something else before that, don't recall).

Only recently has she been able to get off the doxy, but sticks with the biaxin because it makes her feel better.

Those doxy burns can be fearsome! Take care of yourself and tell those bastard ticks to bug off!


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Lymetoo
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I also took Biaxin XL and it was the first drug in a year of treatment to begin to help me. Once I went on it, I began to get better. I think I took it for a yr and a half. Many LLMD's use it.

------------------
oops!
Lymetutu


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DeniseBunty
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Hi I am on Doxy but I hardly ever tanned before, I try to stay out of the sun right now, but my son has been off of Doxy for over a month ,he was in the sun playing in water, he got it on his cheeks, down around his neck, a wide strip on his back,it was red and pimples, and then just like a small pimple rash on the rest of his body, it took him 4 days to get rid of it, but he did not seem to mind it,he said it did not bother him
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HEATHERKISS
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Castrong,

I've been on Biaxin for 6 months. It has helped me tremendously. I used to have constant pain everyday.

Now I have twinges of pain here and there and when I'm tired.

Have your LLMD add plaquenil for better absorption.

Don't know much about doxy so sorry about the horriffic burns.

Heather


Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
bg
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Hi, yes, my pimply rash drives me up a wall; non-stop itching, ON FIRE, & I want to crawl inside itching rash some more! Haven't found any ointments that will help the itchings. They'll leave & be back 2-3 days later plus going other places on my body.

Welcome to this 24/7 support group board!
Here's TREEPATROL's and TINCUP'S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this.

print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

bettyg, Iowa


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castrong
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Since having stopped the doxy one week today.......I am happy to report that the rash still isn't totally gone but it is sure a heck of a lot better!

BettyG - Thanks for the links. I had printed out Dr B's info when I first got to this board -it definitely looked like it should be a must to have handy. Thanks for pointing me toward Cheryl's web site. You are right - there is a lot of reading on the board's newbie list of links. I hadn't looked at that one yet. Just glanced at it and it looks like there is a lot of info on that site, so I will start reading it.


Posts: 19 | From Millersville, MD | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
   

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