Hello: This is my first post. Three weeks ago I got a bull's eye rash and other rashes on my body(the others were not bull's eye). Bull's eye was warm to the touch and I had temp of 99.6 to 100.1. I went to my dermatologist who said to wait 2 weeks for Lyme test. I went for blood test 2 days ago and the doctor called and said he wants to look at the rash again, but he is leaning towards negative. My rash is still there I have aches all over my body. I thought if you had a blood test the results would either say yes you have Lyme or you dont have it. P.S. I live 90 miles north of NYC which is in the high risk for Lyme. Thank you
Posted by Lily (Member # 13158) on :
I'm sure others will be able to tell you more.
However, with a rash like you describe, I would definitely push for the physician to start ABX right away. This is your window of opportunity.
As well, my understanding is that a test will not be positive right away. It takes a few weeks. So, if the test is negative, that does not mean that you do not have Lyme Disease.
It sounds like you are starting to have some symptoms. I would not be cavalier...go for the ABX. Chances are the MD will just waste your time trying to fugure this out for you only to conclude "no Lyme".
Lily
Posted by adamm (Member # 11910) on :
The bullseye rash is diagnostic, and it is absolutely imperative
that you get to a physician who treats according to the ILADS
guidelines ASAP. you'll be able to find one if you post in the seeking
a doctor section.
also, go to lymecryme.com for documentation of the poor sensitivity
of the blood tests you received.
Wishing you the best of luck,
Adam
Posted by sixgoofykids (Member # 11141) on :
Sent PM with doc's name.
Please see an LLMD asap and while you're waiting get another opinion .... until someone will prescribe you 200 mg doxy twice daily. You need to take it until you are symptom-free for four weeks or a minimum of six weeks (according to Dr. B's guidelines on www.ilads.org).
BTW, the bullseye rash is diagnostic for Lyme, you have it.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by mariana: I thought if you had a blood test the results would either say yes you have Lyme or you dont have it.
Sadly NO. The lab needs to be a specialty lab when it comes to Lyme.
And YES.. the rash is diagnostic of Lyme meaning YOU HAVE IT.
Be sure to read the link I posted! Posted by mariana (Member # 15933) on :
Thank you so much for your replies. I will let you know what happens at the doctor tomorrow.
Mariana
Posted by Lymetoo (Member # 743) on :
Please do!! Good luck!
Posted by lymednva (Member # 9098) on :
While the rash is still there get a photo or two of it. Put something in the picture that will indicate relative size, like a coin, ruler, etc. If possible get at least one photo that also shows your face, so there is no question it's you.
Don't delay, rashes can disappear. Good luck with your doc!
Posted by bettyg (Member # 6147) on :
welcome; so glad you found us.
also, with the photos, have TODAY'S NEWSPAPER DATE VISIBLE in what you take for proof!!
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. Posted by groovy2 (Member # 6304) on :
Ditto on taking a picture of the bullseye
Posted by mariana (Member # 15933) on :
I went back to the Dr. today and he said my test came back negative.
I told him I had heard these tests may come back negative and I might still have Lyme so can I please get some antibiotics anyways.
He said no and said I should take another test in 2 weeks. The test is called Lyme disease IQM early test with reflex. Its the same one I took already .I went to Labcorp.
[ 20. June 2008, 10:26 PM: Message edited by: mariana ]
Posted by mariana (Member # 15933) on :
Another update: I called another doctor suggested to me and they said : call my primary care physician to look at my rash .They (the LLMD) can see me in 4 weeks but that I need to be on antibiotics , especially since I have had the rash for 3 weeks.
I have appt tomorrow to see my doctor.
[ 20. June 2008, 10:27 PM: Message edited by: mariana ]
Posted by mariana (Member # 15933) on :
Sorry about the way I posted.
I tried to fix it. I hope its better.
I would like to THANK everyone for scaring the heck out of me.For telling me I have Lyme if its bull's eye.
Otherwise, I would not have gone to see another doctor.
I went to see my own doctor today. I told her the whole story.
She said dermatologists know nothing about Lyme.
She looked at my rash which has been here for 3 weeks and said it looks like Lyme, you had flu like symptoms, the rash was not itchy , rash is not raised, its bull's eye ,therefore she says indicative of Lyme.
She said she worked 13 years at the ER and when anyone came in with such a rash, they were put on Abx right away, no waiting for blood test results.
She gave me Doxy 100mg/ 2x a day for 3 weeks, then go back to her and do a western Blot( I think).
When I asked my dermatologist for antibiotics he said no, don't worry you'll live.
Sorry about making this post so long
THANK YOU EVERYONE
Posted by Keebler (Member # 12673) on :
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I'm glad to hear that your own doctor is stepping up to the plate.
Did she mention testing for co-infections ??
Did she mention medicine for the cyst form of lyme ?
You may still want to schedule an appointment with a LLMD.
If you still have the rash, take photos - with your face in one so they know it's you if you need this at a later date. Take several - just in case you might have to leave them with different doctors.
TuTu suggested the face shot and one with a newspaper to show the date. This may help with insurance documentation.
Whatever the rash(es) look like - bulls-eyes or not, take photos. While the bulls-eye is definitely lyme, lyme also has other types of rashes, too.
Be sure to get good light and maybe put a clean quarter near it for size perspective.
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ILADS: www.ilads.org - check out articles and download the Treatment Guidelines.
--
to the upper right of this page, you can find a support group near you.
--
You might also get a copy of "the Lyme Disease Solution" by Singleton. You can read reviews at Amazon.
Best of luck... and take care.
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Posted by seekhelp (Member # 15067) on :
I am new to all this, but I can't fathom how doctors can be so ignorant about some of this stuff. Just the few stories I've read on the forum make my head spin!
Why would they risk a patient's health? If you know you're not educated about a disease such as Lyme, why take such an offensive stance on non-treatment?
Posted by mariana (Member # 15933) on :
What is a cyst form of Lyme?
I am new to this also.
You are right. the dermatologist could have said go see your doctor because Lyme is a serious , tricky disease and not all doctors are equipped to deal with it.
what got me mad was that he said don't worry you'll live.
Posted by adamm (Member # 11910) on :
The cyst (i.e. spore) is a protective structure in which the
bacterium encases itself i order to survive under adverse
conditions. These must be destroyed with different drugs than
those used to target the bacterium in its spiral form, and
the two types of agents are frequently administered concurrently.
![[hi]](graemlins/hi.gif)
![[Smile]](smile.gif)
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)