Lyme Disease/Lymes disease

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Question
QUESTION: What is the % of men to women are diagnosed with lymes disease?

ANSWER: Dear Tom, I feel like someone else asked me this exact question several months ago.  This is one of those rare times that I really don't have an educated answer for you!

Because I know plenty of men with Lyme, it's hard to say what the ratio is just based on the Lyme patients I know personally. I don't think the Lyme bacteria discriminates between sexes - ticks enjoy biting men and women just the same! :)

I HAVE noticed however, that women seem to be more inclined to visit a doctor when symptoms present. That's just been my personal observation.

If you ever find out the answer to this question - I'd appreciate if you let ME know! And thank you again for writing!

Best,
Bonni

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

QUESTION: Hi Bonni,
Thanks for the answer. The reason I asked the question was that it seems more women get diagnosed with Lyme disease.
My follow up question is whether many of the reported cases are misdiagnosed (false positive) as Lyme disease because they have ruled out other possibilities to explain the symptoms and not necessarily actually Lyme disease.
One case in particular, a neighbor woman has severe symptoms but tested negative twice. She searched for doctors until she found one that seemed more Lyme disease "knowledgeable" and now tested positive. She's flying out of state for Lyme disease treatment and none of it is  covered by insurance.  
She is desperate.
Follow up question:
With chronic lyme's disease would a false positive be more likely than a false negative?
Thank you,
Tom

Answer
Dear Tom - I actually have to (politely) disagree that it seems like more women are "diagnosed" with Lyme Disease. It has been my experience going to the same Lyme doctor for the past 2 years that there are almost as many men who have been diagnosed as women. I have an appointment with my Lyme doctor tomorrow so I'll have to ask him this question!

With any lab test - not just Lyme, there is ALWAYS the chance for a false negative OR positive. However, and this is a MAJOR point of contention between IDSA (the Infectious Disease Society of America) as well as the CDC versus the Lyme trained doctors who are the ones seeing these patients come thru their offices every day - there is a disagreement regarding the sensitivity of some labs versus others who test for ALL bands of the bacteria and not just a limited few.

This is why there are so many false negatives and I can't tell you how inaccurate and antiquated the current testing methods are. There have been statistics wildly ranging from 40 to 60 percent of the time - people are getting false negatives. I myself received 2 false negatives and did not get a positive until 7 months after I was bit and by that time, I had already developed severe neurological problems because I wasn't treated in time.

It's so disheartening that there is such a controversy between doctors on the issue of this testing because all the while that the medical community can't agree on proper testing methods - people are suffering terribly and this affects their families, ability to work, etc.

If you would REALLY like to understand this issue, then I HIGHLY recommend you watch the film "Under Our Skin". It won several awards at the Sundance Film Festival years ago and is THE best documentary about the Lyme Disease controversy that is available. I promise it will answer ALL your questions about this matter and you will understand WHY your neighbor would go the extreme of flying out of state for Lyme disease treatment. You should be able to watch it thru Netflix and it may still be available on Instant Watch.

Hope this has helped!
Bonni

****************UPDATE TO MY ORIGINAL ANSWER***********************

Dear Tom - As promised, I told you I would pose your question to my LLMD since I happened to have an appointment today. I asked about whether he treated more women than men in all the years he's been treating Lyme patients and he actually said that it WAS more women! (So I will always admit when I'm wrong, however, I did give you a caveat that I was NOT certain on this one!)

I asked him why he thought this was the case and he said he believes it may have something to do with women's hormones being more susceptible to the bacteria but again, this was HIS theory and therefore anecdotal. So I just thought I would let you know what I found out - and again, I REALLY urge you to watch Under Our Skin. If I could send a copy of this film to everyone I knew, I would! I gave a copy to my Primary doctor when I first got sick with Lyme and he never watched it. But he was also very interested in my Lyme case until an Infectious Disease doctor told him that all Lyme patients are cult members and that there was "no such thing as chronic Lyme".

Perhaps their science doesn't support chronic Lyme, but if that's the case, then their "science" is flawed. In other words, the studies that they are basing their theories on are inaccurate. I can tell you that chronic Lyme or "late stage Lyme" or WHATEVER you want to call it is VERY REAL. Perhaps they are right,  that there is no longer an ACTIVE infection, however, if you study the biology of the borrelia burgdorferi bacteria lifecycle, you will find out that it morphs into different forms such as cysts and biofilms which can cause the Western Blot test to show that the immune system is no longer making active antibodies.

But perhaps if the body's immune system can no longer recognize the original spirochete bacteria, then it would make sense that it wouldn't turn up on a blood test. Sigh. ..Okay, I'll get off my soap box. But it's frustrating sometimes that medical doctors can be so stubborn sometimes that they won't even look into the current research that is being done on tick borne diseases. Lyme is just a small part of the many diseases that tick bites can cause. Anyway, I just wanted to "amend" my earlier answer to you!

My very best,
Bonni  

Lyme Disease

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Bonni

Expertise

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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