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Bullseye Rash
Bullseye Rash  
Two weeks ago (June 23) I decided to go to the doctor due to a bullseye rash forming on my leg (I can send a picture if needed). The rash was hot, firm and from what the internet told me accurate with E. migrans. No tick was found embedded but I work in ecological restoration and pull ~20 ticks off of me weekly. And I was working in Will County IL which has had several cases of the disease spreading through blacklegged ticks. The doctor put me on a week of doxy. This morning (1 week post-antibiotics) I woke up with a tender, 1/4" immovable knot in my neck, near where the occipital lymph node is. I'm worried this is a symptom of post-treatment lyme disease or perhaps that the amount of antibiotics prescribed wasn't enough to knock it out of my system. I never got legitimate Lyme testing done since I assumed I caught it in an early stage. Do you have any suggestions and would you suggest seeing a Lyme specialist at this point? As far as other symptoms go I have mild dizziness & headaches, light fatigue and maybe even confusion/forgetfulness but none of this are severe to the point that I'd call the symptomatic. Any feedback is appreciated, thanks!

Answer
Dear Kristin - I'm so glad you wrote and sorry I didn't reply right away. I've been experiencing one of my many Lyme related issues this weekend, so I was just now able to get to your post. That definitely looks like an EM rash associated with Lyme Disease. Especially if you live in an endemic area.

There is a lot of controversy over the length of time it takes for antibiotics to properly work and even more conservative guidelines thru IDSA, the Infectious Disease Specialists of America list 30 days of Doxycycline as an appropriate amount. Other doctors who are trained in Lyme believe that even a longer course is needed. I encourage you to read Dr. Burrascano's Treatment Guidelines for more information. You can view it at: http://www.lymenet.org/BurrGuide200810.pdf. I think you will find some VERY useful information here.

I absolutely WOULD suggest that you see a Lyme specialist also known as an LLMD (Lyme Literate Medical Doctor). If you need help finding one in your area, please let me know. It IS good that you caught it at an early stage, but I'm very concerned that you were not put on a long enough course of Doxycycline (the preferred antibiotic). Although your symptoms seem minor, if you are not treated properly in the beginning, your symptoms may become much more severe and at that point, it becomes harder and harder to eradicate.

So please let me know if you need to find an LLMD and I'll help you out.

Thank you again for writing, and I'm wishing you lots of luck!

Best,
Bonni

Lyme Disease

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Bonni

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I contracted Lyme Disease while on hiking trip in Virginia almost 3 years ago. I returned to San Diego and within 3 weeks came down with a terrible "flu-like" illness. During that time, I developed some strange rashes on my fingers and the palm of my hand. I also had a giant melon size purple "bruise" on my left thigh which may or may not have been a bullseye - but I didn't even know that was back then. A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 and 1/2 years. I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain. It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in San Diego and we only have FOUR Lyme Literate doctors in this city. I am a member of several Lyme support groups and have become very active in spreading awareness about Lyme Disease and helping people get the right treatment they need. I decided to join up as an Expert, since I saw there were currently no "Lyme experts" listed at this time. I can answer most questions about Lyme - most importantly, how to instruct people as to WHERE to get help, answers, resources, etc.

Experience

I have lived with Lyme Disease for almost 3 years now (in January of 2013) and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available and educate myself. I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need. I've worked with dozens of other Lyme patients in helping them get the proper information and providing them with the resources they need to find doctors, learn about their options for treatments and help them find local support groups in their area. It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, etc. - the list goes on and on. We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!) I am now unable to walk without a cane or walker (depending on how bad my legs are!), I continue to have peripheral neuropathy in both arms and legs, brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on. But I'm hopeful that I'm on the right track for treatment (Finally!) and am optimistic that SOMEDAY, I WILL be cured! :)

Organizations
Local and National Lyme Groups including CALDA (California Lyme Disease Association) Southern California Lyme Group MD Junction Lyme Group

Publications
I have a blog called http://sandiegolymer.blogspot.com/ which I definitely need to update since my last post, but it DOES have a LOT of useful links and information!

Education/Credentials
I have a Masters Degree in Film and Television - no medical degree here, but honestly I feel like I know more now than most (non-Lyme) doctors in the country.

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