Does having a bullseye shaped rash that was diagnosed as having been caused by a tick byte always indicate that lyme is present?
My wife recently found a bullseye shaped rash on her leg. It started as a dark purple splotch on her calf that she noticed last Saturday, and by Tuesday it had faded into a bullseye. On Wednesday she saw a doctor who said it was a byte. He gave these percetages: 50% chance tick, 50% chance if tick, it carries the disease, though he wrote on the report "tick byte." He prescribed 100mg doxycycline twice a day for ten days, as what he called a "prophylactic treatment." But my wife is concerned, because from what she read, once there is a rash, the disease is present.
All the symptoms of lyme mimic the symptoms my wife already has from a disability, but she hasn't had flu like symptoms. We do live in a very high tick area.
Does this treatment sound correct? And does the information sound correct?
We plan to follow up with an LLMD.
Thanks.
John
[This message has been edited by apostrophe (edited 07 May 2005).]
How long is she on the doxy? Many doctors only prescribe 2 weeks, which may not be long enough.
DLL
Anyway he said always, always treat due to rash...it is the visible sign of lyme....
Wish my two had a rash...
In my case, I removed the tick, developed a classic bull's eye rash, but I had NO other symptoms for about 5 to 10 yrs.
I'm glad the dr prescribed Doxycycline for your wife, but my concern is the dose per day & the length of time.
If treatment is inadequate, some of the bacteria will survive & hide out in the body until an opportune time. Then the illness will flare up again. In your wife's case, the symptoms at that time may be the same as the symptoms of her disability & no one would realize LD was still present.
go to www.ilads.org/burrascano_1102.html
"Diag Hints & Treat Guidelines...",
Print a copy. It's about 32 pages of excellent info written by one of the best LLMDs in the country.
page 16: Antibiotic Choices
Doxycycline 100mg 4 x a day
page 17-18: Treatment Categories
Early Localized - single erythema migrans (bull's eye rash) with no constitutional symptoms - oral therapy for 6 weeks.
Since this was written, some drs are now recommending minimum of 6 to 8 weeks of abx, just to be sure.
pages 4-5, 20-24: Co-Infections
Very important info!
Ticks can transmit more than Lyme.
LLMD would consider these possibilities, too.
In most cases, it takes several months to get an appt with a LLMD. Your wife needs an adequate dose of Doxy now, especially since she already has a disability?
Do you mind naming the disability?
Where are you located?
Be sure that the LLMD she sees really is a LLMD, not just a dr who someone says treats Lyme disease.
Go to "Seeking a Dr" here on LymeNet, put your location in the title, & ask for info about LLMDs. Drs' names are not given without their permission, but info will be
e-mailed to you.
If you've been given the name of a LLMD, check to see if anyone on LymeNet recommends him/her.
If not, you need to talk with patients & see if (s)he has lots of satisfied customers.
With Lyme disease, the earlier the treatment, the better the results, but ONLY if the treatment is strong enough & given for a long enough time.
You only have one chance to treat early. The opportunity won't come around again.
The lucky ones are the ones who get a bulls eye rash. A bulls eye rash ALWAYS equals Lyme. The ones who don't get a rash wonder why they are sick. Photograph the rash with a ruler in the photo every day or so. This may be needed in the future.
Aggressive treatment is best- doxycycline 100 mg x 4 times a day for 8 weeks.
Take doxy with a full glass of liquid.
Have food in the stomach.
Don't lie down for 30 minutes.
Careful of sun-may sunburn easily.
If present doctor will not prescribe enough doxy go to another doctor and then another until you get what you need. Meanwhile, make an appt with an LLMD ASAP.
I can fax you copies of all this info if you want to take it to your doctor. Email me a fax number and I'll send it.
Tests for Lyme will be negative at this point because the body needs 4-6 weeks to mount an antibody response that can be measured.
YOU HAVE ONE CHANCE NOW-we have enough chronic Lymies in our group and don't want anymore.
Janet
You need at least 400mg of doxy a day, minimum to be effective. The Lyme spirochetes replicate every 4-6wks....so taking abx [antibiotics] for 10 days is not going to do much, in my opinion.
Do whatever it takes to get the proper treatment for your wife, or she'll be fighting this disease for a very long time.
------------------
oops!
Lymetutu
very important!
I say this to myself a lot.......
Listen to Janet..........Drs. simply don't know........unless you find an LLMD and I suggest you do if your doc is unwilling to give doxy at 400mg for 2 months.
Don' let your wife become a regular here on Lymenet............
robi
When she's on the higher dose of antibiotics, be sure she takes enough acidophilus to replenish the good bacteria in her system.
Read what I wrote about acidophilus under "Amox & Tini - Something feels wrong" http://flash.lymenet.org/ubb/Forum1/HTML/033838.html
Don't have time to retype it here.
Info on acidophilus is on pages 24 & 29 of "Diag Hints & Treat Guidelines..." at www.ilads.org/burrascano_1102.html
Print a copy if you don't have one. It's about 32 pages of excellent info.
While she's on the abx, both of you need to watch for any changes in the disability symptoms you mentioned - either better or worse.
Keep a journal so you don't have to remember everything.
[This message has been edited by cbb (edited 07 May 2005).]
I'm the wife of "apostrophe" (that nutjob computer engineer who spells bite "byte"!) -- We did write to the administrator for a specialist in the area but didn't get a reply. Perhaps someone can tell us of a doctor? We're on Eastern Long Island (Suffolk County) in New York. Lyme = very common here.
I'm curious, how long before you all knew you had Lyme? I've known so many people with it--it's so common here, it's nearly matter-of-fact that people have or may have had it, and get tested at any sign of - fatigue, etc.
I have seen people have a very hard time, and be on antibiotics up to a year, but I only know one person who had a response as difficult as what I'm reading and if I recall correctly, she wasn't diagnosed properly at first (lives in the city).
E.g. the poster who remembers his bullseye rash -- were you treated at the time?
Of the people on this group, how long before you started treatment? It's scary to read--last thing I need is more physical problems (not that anyone does!)--yet this all seems so rare compared to what I've witnessed in RL.
My disability, to the person who asked, is from an accident - I have neck (cervical spine / disk) problems as well as pelvic/hip/upper leg probelms. I'm already on meds (ick!) so this is making me very, very scared.
Jen
Thank you so much for all the replies!
[This message has been edited by JL (edited 07 May 2005).]
As far as answering your question...
I had a bullseye. It actually looked more like a black-and-blue that later developed into a bullseye. I went approx. 3 months without treatment. I am still being treated now.....14 months later.
You could take 100 mg x 4
Or 200 x 2
To find a dr-go to support groups on the left-go to USA then NY then your area- send emails ASAP and call tomorrow if there are phone #s-these people are great and know the local LLMDs-ask who they go to or who they would send a friend to-then get on the phone Monday AM and start calling-stay on doxy until you get to an LLMD-our club is filling fast and we don't want you in it.
good sites- www.ilads.org print out guidelines
www.canlyme.com
Janet
Most of the people here either were not diagnosed until much later or were not given enough antibiotics for long enough when they were first bitten. In other words, they were undertreated.
Don't panic...you have a great chance of not developing disabling lyme and co-infections precisely because you came here to ask and were smart enough to get the facts about lyme disease! Your chances at a full recovery and proper treatment are now excellent!
It is good to know lymenet is there for people who are freshly bitten so that they will not end up with chronic disease!
Take care JL and no need to be scared if you follow the ILADS treatment guidelines!
I had no idea what the bull's eye rash was, so I didn't see a dr.
Probably doesn't matter. The medical community here still says "Lyme is not a problem in South Carolina."
One dr told me "We don't waste our time studying an illness that we'll see only one bizarre case in a lifetime."
We're desperate for knowledgeable Lyme doctors!!
I hope you didn't mind my asking about your disability. I'm sorry if I seemed nosey.
Too many people with LD have been mis-diagnosed. Because they get no treatment or the wrong treatment for their real problem, some become disabled.
A man here was diagnosed with ALS, but recently he had a positive Lyme test. They still believe he has ALS, so he's not getting the treatment he needs. So sad!!
Your location wasn't given & I thought you could be in an area like mine where Lyme disease is not recognized.
I was thinking that the symptoms you already had could have been undiagnosed Lyme.
I've seen that happen too many times.
My father was mis-diagnosed with Alzheimer's but a New Jersey LLMD diagnosed Lyme.
I was told I had early rheumatoid arthritis, but the NJ LLMD diagnosed Lyme with Lyme arthritis.
My grandson was suspected of having ADD, but it was Lyme. He sees a Lyme Pediatrician in CT every 3 months.
The doctors around here diagnose everything BUT Lyme!!
If your bull's eye rash is still visible, take a picture with a ruler or coin to show the size. Keep the picture in your medical records. It's your proof of Lyme disease. You may need it one day.
Since you were lucky enough to see the bull's eye rash, you can get treatment early.
Your situation would not be as debilitating as so many people here on LymeNet, unless you already had undiagnosed Lyme.
With proper treatment and a caring husband helping you, your prognosis should be good!!
Count your blessings!!
Keep in touch & let us know how you're doing.
He recommends, I see, 4-6 weeks of oral anitbiotics for early Lyme. Gosh, I think my body is going to give out, as it would with the disease too...
In reply to the post before mine, I didn't see a tick but the rash. It began dark, dark purple and faded into the bullseye. Is it possibly a spider bite or definitely a tick? I'm not looking for a way out, just information. (I've seen ticks; I'd recognize one.)
Yes, I took a photo last night - only measured it after - 1 inch. It's still here, though, I can take the photo w/ruler today. It is, btw, staying the same size but the center is getting larger while the rim is getting smaller -- prototypical, right? :-(
It's been exactly one week (Last Sat) since I saw the purple splotch. I don't go out often--being disabled--and actually think I was bitten just the day before, when I was out, wearing pants that would lift to exactly that spot on my calf when I sat on a bench outside. Otherwise, it either came in my house or was a big fluke while outside or in my car once/week or so -- which is why I asked about spiders, b/c we have those too (at home) and I heard as well that there is a brown spider whose bite looks like mine did - at least when my social worker had a look at it last Wed (more purple less bullseye).
Again, thank you,
- Jen
[This message has been edited by JL (edited 08 May 2005).]
There is a link in this link with pics of rashes.
Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html
[This message has been edited by Lymetoo (edited 08 May 2005).]
You are also so fortunate to live 1 mile from Dr. B! Be sure to take antibiotics for longer than your dr. prescribed...NO, I'm not a dr. just really sick since no one treated me early on! YOU CAN BE CURED; we late-stage, chronic lymies can NOT; but hope to go into remission.
You'll get wonderful advise from folks of all types of occupations!
Bettyg, Iowa
Be sure to print off TREEPATROL & TINCUP's newbie links. Tree constantly adds to his. Check them off as you read as there are many months of reading there!