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Lyme Disease/Treating Lyme Early

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QUESTION: Hello Bonni, I have a few quick questions for you.I just recently got back from a backpacking trip in Europe. I stayed with some family in Hungary, and unfortunately suffered quite a few bug bites, all of which I assumed were mosquito bites. However, just last night I noticed that one of the bites that I had been continuously itching (the bite was very itchy, and looked like a mosquito bite at first), looks exactly like a bulls eye. I researched this, found out it was most likely Lyme Disease and went to my doctor. He wasn't too familiar with the disease, but we looked up images together, and he prescribed me 2 weeks worth of Doxycycline.

The bite most likely occurred about 10-14 days ago. Did I treat this condition promptly enough? I read online that if it's treated quickly there not as big a risk (at least I hope!), but I also read some horrible stories about people who are lifetime sufferers. I made myself pretty nervous by doing all this reading, and I'm just wondering if you happen to have any advice. Besides the rash I have had no symptoms, which I hope is a good sign.

I'm 18 years old, have always had a strong immune system (went through all 4 years of high school and never had a day where I was sick enough to miss school). I'm hoping that by treating it quickly, I have a better chance of beating this thing. Sorry for this lengthy question, and thanks in advance for any advice!

ANSWER: Dear Corey, thanks so much for writing. It's such a misconception that Lyme Disease is an "East Coast Disease", when in fact, it is now endemic in Northern California, and more and more cases are being reported in every state of the U.S.
Additionally, there are different strains of "Lyme" in Europe and Australia which are making it more difficult to test in labs, because the labs are checking for antibodies of a small number of borrellia burgdorferi bacteria strains.

With that said, you are among the "lucky" ones, who discovered a bullseye rash (many do not, and go for months not knowing to check for Lyme!) and I'm glad that your MD did prescribe you 2 weeks of Doxycycline. That is definitely the preferred abx for treating Lyme. As far as whether 2 weeks is enough, that is a question that is hotly debated amongst the medical community. The Infectious Disease Society of America (IDSA) does recommend 2 weeks (which is woefully inadequate) and if Lyme arthritis presents, then they recommend 28 days of Doxycycline (100 mg twice a day). If you have clinical evidence of neurological disease, then they will recommend IV Rocephin antibiotics. For patients who have persistent or recurrent joint swelling after the initial course of oral abx therapy, IDSA recommends they should be re-treated for another 4 week course of oral abx OR with a 2-4 week course of IV Rocephin.

I am giving you information about what IDSA recommends because if you DO have to go back to your doctor who is not familiar with Lyme Disease, they will most likely follow the guidelines I've mentioned above. However, there are doctors who specialize in Lyme treatment (Lyme Literate Medical Doctors aka LLMDs) who believe in longer treatments and usually follow a different set of guidelines written by Dr. Burrascano:
You can read them here: http://www.lymenet.org/BurrGuide200810.pdf

I would pay special attention to pages 8 or 9 I believe - where he includes a checklist of symptoms. I highly recommend this because you may experience certain symptoms that you may not connect with having Lyme Disease. To answer your question, yes, there are people who recover after a short course of antibiotics and may only experience intermittent mild joint pain for the rest of their lives. However, it is my opinion that those are the minority. Most people continue to have more and more symptoms arise in the months after they were bit, and it is imperative that they get proper treatment to avoid Chronic Lyme Disease which can last for years.

My advice to you is to do everything you can to keep your immune system healthy (remember your immune system is 80% of your "gut", meaning your digestive system!) and if at any point you begin to experience any additional symptoms as seen on the checklist in Burrascano's Guidelines, then I would try and find an LLMD as soon as possible. If you need help with that, please feel free to write me back.

I hope this has helped - and know that you did everything right! I wish you good health!
Best,
Bonni R.




Co-Infections

---------- FOLLOW-UP ----------

QUESTION: Dear Bonni, thanks so much for the reply. All of the information is very helpful. I haven't noticed any symptoms as of yet. I felt like I was getting a fever at first, but I'm pretty sure it was just the placebo effect. I tend to worry myself into thinking I have symptoms, and when I went and checked my temperature it was 97.7. Once seeing this I felt fine. I looked at the symptoms on the website you recommended, and so far have none of them that I hadn't already experienced before my trip. I have one more follow up question for you. Does a bulls-eye shaped rash always guarantee Lyme Disease? When I suffered the bite, I was sure that it was a mosquito bite. It looked like one, and itched like one. Are tick bites like this as well? I itched it so much to the point of slight bleeding, and I bus tables at a restaurant, so it's very possible that some of the gunk from my hands got into the bite. The rash was very itchy, which I hear usually isn't the case, and it never expanded. It stayed around the size of a silver dollar for 4 days or so, and is pretty much invisible now, except for the scab that remains from my itching. Sorry for that long ramble, but basically my question is: Is it possible that it was just a mosquito bite, or is it most certainly a tick bite due to the shape?

Answer
Corey - I don't normally do this, but you have my curiosity up. I've been having a discussion with another group recently about Bulls Eye Rashes that don't look like the typical "bullseye" but the patients did turn up with positive Lyme antibodies. If you don't mind, could you send me a picture of your original bullseye rash? You can send it to leahpuppy31 AT hotmail.com (obviously use @ for AT - have to avoid the autobots!) In return, I'd like to send you a PDF of a clinical presentation by an infectious disease MD who posted many unusual looking EM rashes which most doctors would have dismissed as Lyme - but they were indeed "bullseye" rashes.

Also remember, in addition to the initial "bullseye" or "EM" rash, you CAN get other rashes on your hands, arms, basically anywhere which develop soon after your infection. These can be quite itchy and if you scratch them enough, the skin will harden and can start bleeding which it sounds like may have happened in your case. I had this myself - there is a recurring rash on my index finger and inside of my palm which I've had ever since I got bit and it reappears every few months or so.

So, again, I don't know if that was helpful, but I would like to send you that PDF with the pictures and also take a look at the picture of your original bullseye if you don't mind.

Thanks Corey!
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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