Lyme Disease/LYME??

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Question
I HAVE BENN DIAGNOSED OVER THE YEARS WITH PA,OA,RA THEN FIBROMYALGA. THE RX'S RANGED FROM MINICYCALINE TO BIOLOGICALS.  WHEN I WAS ON MINI.. I WAS RESPONDING IN A POSITIVE MANNER.  I WAS TAKEN OFF TO SEE WHAT HAPPENS-UNFORTUNATLY I GOT WORSE AND WHEN I WENT BACK TO MINI..IT HAD NO POITIVE EFFECTS.  A FRIEND HAS BEEN TREATED FOR LYME FOR YEARS IN THE SFO AREA.  MY WIFE, MY FRIEND AND I BELIEVE THAT I HAVE LYME BECAUSE OF THE SYMPTOMS I SHOW. I USED TO LIVE IN NJ TILL I WAS 15 YRS OLD.  LONG WINDED BACKROUND-SORRY- BUT NOW THE QUESTIONS: HOW DO I REALLY KNOW IF I HAVE LYME. WILL DRS BE TRUTHFULL OR WILL THEY BE SELF SERVING? IS THERE AN AFFLIATION THAT THE DRS BELONG TO THAT I SHOULD LOOK FOR? AS YOU CAN TELL I AM WEARY OF DRS.S ANY SUGGESTIONS THAT WILL HELP ME AND OTHERS?? THANKS

Answer
Hi Stuart, thank you for writing to me. I understand the frustration you feel living with a chronic illness. If I understand correctly, your question is "How do I get a definitive diagnosis for Lyme?" The answer is that although Lyme is supposed to be a clinical diagnosis, the most accurate lab tests (in my opinion) are done thru Igenex Labs which are nearby your area, in Palo Alto, CA. You will need a doctor to order the blood test for you but you can call Igenex Labs and have them send you a free test kit which you can then take to the lab so that they have all the necessary information and method of packaging the blood sample. It takes up to 3 weeks and then your doctor will get the results.

Re: finding a doctor who understands Lyme Disease, yes, there IS an affiliation, it's called ILADS and they have a website. Any doctor who belongs to ILADS would be Lyme Literate.

I would suggest you read Burrascano's Guidelines at the following site: http://www.lymenet.org/BurrGuide200810.pdf
If you go to page 9 or 10, there is a list of symptoms which are indicative of Lyme Disease. This may be helpful for you in recalling certain symptoms that you may not have made the connection to Lyme. I believe that there may be a support group in the Bay area for Lyme patients, you may want to do a search on Facebook if you're a member, and see if there are any you could join. If not FB, then there may be actual monthly groups you could attend. It sounds like you need the support and encouragement of others that are going through the same thing you are, I know I have benefitted immensely from being a member of Lyme support groups! :)

I hope that this has answered your question, Stuart - please don't hesitate to contact me again if you have more questions.

Be well!
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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