Lyme Disease/lyme disease

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Question
Over the past 7 years I have had lyme disease twice. Once really bad with bullseye in middle of back as well as Bell's Palsy on my face. Since then, and it may not be related, I have been having trouble with my eyesight; clarity,etc. I go to an optomologist twice a year without much success or improvement. Only wants to know if it gets worse. I have what I call "squigglies" in my eyes most of the time. My vision is 20/20 with glasses on but I have difficulty seeing clearly and bright lights & sun affect me most of the time. I know at 68 my eyes change normally and I can accept that. I also do get extremely tired at times; fatigue I guess, my joints ache which I already know is related to arthritis & I take Bio-Flex to help my joints. I have for some time now, have burning on the bottom of my feet; not tingling tho. just hot. Could any of these symptoms listed above be related to lyme. Negative results so far when tested. As u suggested, I'm planning on contacting a Lyme Specialist in my area. I live in upstate NY where ticks thrive & do preventive measures outside my rural area. Awaiting your reply. Thank you.

Answer
Dear David, I apologize about the delay in my response and appreciate your patience. :)

In answer to your question, ALL the symptoms that you listed are VERY common with Lyme Disease. You mentioned that in the past 7 years you've had LD twice, however, you did not indicate whether you were treated and for how long. Many of the people in the Lyme group that I belong to have described the exact same symptoms of "squigglies" in their eyes as well as blurring, etc. One of the top symptoms of Lyme are fatigue and joint pain. The burning on the bottom of your feet is a symptom of a co-infection of Lyme, called Bartonella. It is quite common for Lyme patients to also experience one or more co-infections which sort of "piggy back" on top of the initial bacteria called "borrelia burgdorferi" which causes Lyme.

Unfortunately many people who have Lyme will come back with negative test results, because most of the labs that doctors use only test for ONE strain of the bacteria from over 30 years ago, when in fact there are now over a dozen strains known to researchers. (You may also find the following article very interesting about another Tick Borne Disease which is a different type of bacteria but causes "Lyme like" symptoms: http://healthland.time.com/2013/07/19/theres-a-new-disease-spread-by-ticks-and-i

There are several specialty labs in the U.S which DO test for all strains and are much more sensitive tests - the lab I have always recommended is Igenex Labs in Palo Alto. The fact that you live in upstate New York is a definite concern that your symptoms ARE related to untreated Lyme Disease which could possibly be Chronic Lyme Disease by now. However, people DO recover and you're on the right track if you're planning on seeing a Lyme Specialist in your area.

In the meantime, here is a link to some guidelines that are used by most LLMDs (Lyme Literate Medical Doctors) who belong to ILADS (International Lyme and Associated Disease Society) http://www.ilads.org/. This was prepared by Dr. Joseph Burrascano who is a leader in Lyme Treatment. You can view the report here: http://www.lymenet.org/BurrGuide200810.pdf. If you go to page 9 or 10, I would suggest going through the checklist of symptoms and see if there are other symptoms that you may not have connected with Lyme. Make a list of all your symptoms and bring it to your appt when you see your LLMD. I would also suggest that you ask your LLMD to have your blood tested thru Igenex Labs for much more accurate testing. I would also ask about co-infections such as Bartonella which could be causing the burning in the bottom of your feet.

I would also highly recommend watching the film, "Under Our Skin", if you haven't already. It's an excellent documentary which helps to explain why testing is so inaccurate and why finding proper treatment for Lyme is so difficult. I believe that it is still available to watch for free online and I also believe that Netflix carries it.

I hope that this information has helped you and please contact me again if you have additional questions. I promise I will respond more quickly! :)

All my 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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