Lyme Disease/Lyme suspicion

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Question
Bonni,
I have two separate concerns. First, my husband recently found a deer tick attached to his privates.  Because we live in a high Lyme threat area, he went to the doc and they put him on Doccycycline as a precaution.  We're in northern va, and our small county is currently leading the state in Lyme cases this year. He has not been feeling well for the past two weeks.  Is there a better antibiotic, or any other regimen he should be following?

Second concern, while researching for my husband, I came across new info, and now I'm wondering if my mom may have Lyme.  She's being treated for cognitive disorders that began about 4 years ago.  We've had a zillion tests done, but Lyme has never been mentioned.  She lives in the country in northern Virginia on 30 tick-infested acres, so is at high risk. Her dog had Lyme. My dad died about 8 years ago, and shortly thereafter, I noticed some poor judgement, and mild cognitive impairment, which docs attributed to depression. About 4 years ago, she had to have knee replacements. I don't think she ever suffered from Bell's palsy, but, I have noticed that one eye is slightly droopy. I have been assuming she had a mild stroke, or some problem during one of her surgeries. She has had several MRIs which all are normal. Altheimers and senile dementia have been ruled out, but there is definite cognitive dysfunction. Could this be Lyme? If so, how do we test for it, and who should I take her to see in the northern Virginia, dc area?
Thanks for your willingness to help!

Answer
Dear Shan, I'm sorry for the delay in responding. This is what happens when you're a Lyme "Expert" and also have LYME! ((smile)) I've been experiencing a flare up recently so everything gets put on hold unfortunately. :)

Okay, let's address your questions! I'm VERY familiar with Northern Virginia because I used to live there and Virginia is where I was visiting when I also got bit by a tick and returned to Southern California with Lyme Disease (unbeknownst to me at the time). Some people come back from vacations with t-shirts. . . . So your husband found a tick on his privates - unfortunately that's probably an easy target for ticks to get at - basically anything waist level or lower if you're around bushes with ticks on them. I'm VERY glad your local doc put him on Doxy but you didn't indicate how LONG he was on it. That can be very important. Some doctors may only give you 10 days worth and pronounce you cured. Unfortunately that may not be long enough. ESPECIALLY since he hasn't been feeling well lately - I would go back to the doctor IMMEDIATELY and tell him you want more Doxycycline (Worth a try). As far as the best antibiotic to be taking? In the very beginning, yes, Doxycyline IS the abx to take.

I'm going to give you a link to Burrascano's Guidelines. He is a doctor who is an expert in Lyme Disease and came up with these guidelines for patients AND doctors as well to understand how to treat Lyme as well as other co-infections that you may pick up (such as Bartonella, Babesia, Ehrlicia, etc.) Lyme is just ONE type of bacteria that is transmitted by ticks. Unfortunately there are others. Here is the link: http://www.lymenet.org/BurrGuide200810.pdf   I would suggest starting with Page 9 and see if there are symptoms that your husband has been experiencing.

Now - your second question about your mother. Every SINGLE symptom that you mentioned about your mother is a symptom of Lyme. I would absolutely suspect Lyme for several reasons. She lives in a Lyme endemic area. Her dog had Lyme. She has had problems with her knees. She has cognitive impairment. I would take her to a Lyme Literate doctor immediately and have them do a Lyme test thru Igenex Labs. (and bring your husband with you too!)

If you can send me an email at leahpuppy31@hotmail.com, I can talk with you further about doctors in your area. So sorry that you have to go through this, but your husband and mother are lucky to have you! I look forward to hearing from you.

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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