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Posted 5/5/2016 1:09 AM (GMT -5)
Not sure I am doing this correctly. I stumbled on this site looking for information on Lymes. I have had most of the symptoms you have discussed here for a good part of my life. I also have the bullseye rash about twice a month. Sometimes they overlap as many as three at a time. I have seen four Drs and no one can come up with what is is. Last Dr. Said white count was very high which indicated I must be coming off an infection. She thinks I have the herpesvirus and has put me on strong antibiodics for 30 days. Since I have been on them, I continue to gave new bull eyes about every two weeks. Western Blot only indicated one band for Lymes and I understand there five that you must have to be diagnosed with Lymes.

I would love to have the name of a Dr. in Louisiana. I am so tired of feeling this way and takings meds that I am not even sure are working. Thank you.

Post Edited By Moderator (Girlie) : 5/5/2016 1:11:37 AM (GMT-6)

Posted 5/5/2016 1:32 AM (GMT -5)
Hey Duckums,

Welcome to the community! Given the rash, being a bullseye, and the recurrence of the rash during antibiotics (can be known as a herxheimer reaction), it sounds to me like lyme is a definite possiblity for you. However the world of lyme is a lot more complex than most Dr's will be able to explain to you, or understand from their training!

Don't let yourself get lost in the system that many do. I would highly recommend searching for and seeking out what they consider a "LLMD" or "Lyme Literate Medical Dr". ILADS is an organization that can help you locate these specialists in your area. They can be found and contacted at http://www.ilads.org/

Hope this helps! Given what you have described to me here, it sounds like you would be a prime candidate for having a lyme oriented infection. If that's true you need someone who understand the disease to help you navigate the confusing territory! Also, check back in here often as it is a very supportive community!
Posted 5/5/2016 1:37 AM (GMT -5)
Wow that is surprising to me that you have not been diagnosed yet. From what I gather the only thing that has a bullseye rash is Lyme's. I am sorry you are going through this. A good place to start is the thread at the top of the page new to Lyme's if you haven't already of course. The moderators will be on later to fully welcome you but you will find a lot of support on here and great ideas.
Also if you are looking for a Lyme's savvy MD start a new thread titled looking for llmd in" " and one of the moderators will send you an email. But you will have to enable your email if you haven't already.

But welcome and best of luck on your journey.


Nick
Posted 5/5/2016 2:07 AM (GMT -5)
Hi Duckums - welcome to our community!

Even though you had a negative test result - if you had one positive band that is Lyme specific...along with symptoms consistent with Lyme Disease - that is sufficient to diagnose you with Lyme. The bulls-eye rash is Lyme Disease.
Would you be interested in posting what band was positive on your Western Blot?
I also want to mention that the testing is not good for Lyme Disease diagnosis...but the best test to get in the U.S. is from Igenex Lab. You can get the Western Blot IgM and IgG for $210. You can call Igenex and order a test kit...get a Dr. to sign the lab req...and take to a lab for the blood draw.


I am not surprised that you haven't been diagnosed - many of us get the runaround - Doctor, after Doctor...until we start researching ourselves...or find a forum like this...and realize ourselves that it might be Lyme Disease.

You should find a LLMD and schedule an appointment. To get recommendations from forum members, start a new thread titled: "Looking for LLND in Louisiana" (You could also mention the nearest large city)

Also, you can contact the ILADS Physician Referral - they will send you three names of LLMD's near you:


ilads.org/ilads_media/physician-referral/

Since you are new here, it would be helpful for you to take a look at the thread at the top of the page titled: "New to Lyme?..Start Here!" Lots of great information in that thread.

Oh - you will see I edited your post - just to give your thread a title.
Posted 5/5/2016 8:10 AM (GMT -5)
What band did you have? Also, certain labs (like labcorp) don't show 2 bands that are very Lyme specific (31 & 34). So you may have those and not even know it if you were tested with standard labs.
Posted 5/5/2016 11:19 AM (GMT -5)
Welcome Duckums.

You have been given some great information already. I just wanted to welcome you here and hope you feel right at home.
Posted 5/5/2016 12:51 PM (GMT -5)
Welcome Duchums! I hope you will get some answers and start on treatments in the near future. You've come to a good place to learn and get support. Keep us posted on what you find out.
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