Ahoy, General Public!

Stephanie here.  Some of you may know me, some of you may not.  I created this Tumblr for you because I want to share some very important information which could save your life or the life of your loved one.  I’d like to tell you about my personal experience with Lyme disease.  This post is going to be kind of long, so my apologies about that.  But, I promise it will 100% be worth your time.  
 
For those of you who may not know, I am a passionate runner and ran track and cross country at Mount Holyoke College.  I battled pain in my low back and left leg during running seasons in 2007 through 2009.  Five years, over 30 doctors, a great deal of stress, and thousands of dollars later, I now know that this pain was in fact due to Lyme disease. I created this Tumblr for you all because I want to save other people from these burdens. During my personal time, I researched Lyme, and found out some VERY startling facts.  Most people are not aware of what a crazy disease Lyme can be.

Lyme is known as the “great mimicker” because it is misdiagnosed SO often as other medical conditions. It can infect nearly every system in the body- so it can be misdiagnosed as cardiovascular stuff like congestive heart failure, brain/neurological stuff like ALS, Alzheimer’s, MS, Parkinsons, Fibromyalgia, skin stuff like rashes, hives, dryness, or itching, etc. Lyme has proven to be misdiagnosed as EVERY psychiatric disorder- including Autism, ADD, bipolar disorder, schizophrenia, panic attacks/anxiety/depression (severe anxiety was my very first symptom in spring of 2007), learning disorders, etc. In one study in a documentary film about Lyme called “Under Our Skin”, a doctor sampled brain tissue from 10 Alzheimer’s patients, and 7 of them were positive for Lyme. One of the most common ailments patients are misdiagnosed with is CFS (Chronic Fatigue Syndrome). I read one study where an MD tested his CFS patients, and 90% of them had Lyme.  Each Lyme patient’s symptoms vary greatly.  Many of the ailments I mentioned are chronic and non-curable, but Lyme is certainly curable!  So, that’s why it’s worth it to know for sure if the patient actually has Lyme.

I went from doctor to doctor looking for an answer regarding the pain in my joints and muscles.  When I received my diagnosis of Lyme, I found out over a dozen of other symptoms I was experiencing were due to Lyme.  Some of the symptoms I was experiencing were sleeplessness, anxiety, hair loss, excessive itching, IBS, stuttering with speech, increased floaters in my eye, etc.  Many of these symptoms I passed off as due to stress, age, or other non-medical stuff.  I never thought my joint and muscle pain could have been from a disease.

With the same information I’m telling you, I helped one of my fellow Mount Holyoke students get diagnosed.  This student and I lamented about our physical woes during our time at Mt. Holyoke.  Unfortunately, she became so ill she needed to take a medical leave for a few semesters.  She was diagnosed with CFS, multiple allergies, a learning disability, Leaky Gut Syndrome, among other symptoms.  She knew of all her symptoms, but even when I presented all of this information to her regarding Lyme, she still replied, “No, I don’t think I have Lyme.  I’ve been tested for lots of stuff and been going to doctors for years.  I know what I have.”  Needless to say, a few months ago she told me that she did in fact test positive for Lyme, has begun the prescribed antibiotic treatment, and has seen improvement in her symptoms.  My reason for telling you this story is that if you or your loved one is not experiencing at least significant improvement with the treatment they are receiving, consider being tested for Lyme.

There is a controversy among Lyme patients and doctors. The Infectious Disease Society of America (IDSA) creates most of the guidelines which doctors follow when treating diseases, like Lyme, Fibro, and CFS among hundreds of others. The IDSA guidelines on Lyme are: Lyme is rare, Lyme is treated with 3 weeks of doxycycline antibiotic, and Lyme is tested successfully using the ELISA blood test. These guidelines are flat out WRONG! There is another group called International Lyme and Associated Disease Society (ILADS). This organization focuses on promoting the truth about Lyme testing and treatment. The truth is that the ELISA blood test gives false negatives most of the time. I was first tested using only the ELISA test, and it was a false negative both times.  Lyme is not rare.  It is estimated that 1 in 15 Americans is currently infected with Lyme, and most don’t know it. Lyme is the most quickly spreading infectious disease in the world- 4x more rapidly spreading than HIV. What happens is, patients are tested using only the ELISA test, and if they receive false negatives, they are not treated. If a patient is treated right away after infection (aka RIGHT after the tick bite), they should recover in the few weeks projected by the IDSA. But, if left untreated, the bacteria travels beyond the bloodstream, and then the bacteria essentially ‘hide’, multiply, and are extremely difficult to treat. (I’ll be on antibiotics for years, and must change my lifestyle and diet permanently to prevent any potentially dormant bacteria from becoming active again.)  The Western Blot blood test is much more accurate, and the IGenex blood test hugely more so.

There are political and economic reasons why IDSA continues to perpetuate these inaccurate guidelines. Essentially, IDSA board members receive financial gain from the ineffective blood tests used to test for Lyme, or are in cahoots with health insurance companies that don’t want to pay for how expensive treatment of advanced Lyme can be (years of antibiotics). Politics was never my strong point, but you can definitely learn a LOT more about this dynamic by watching the film “Under Our Skin”. This film also focuses on how frequently the disease is misdiagnosed, and why it is so difficult to cure once untreated for a while. The film is on Hulu and streaming on Netflix.

Another thing one should know about Lyme is that ticks don’t just have that one Lyme bacteria in their stomachs. Ticks can, and usually do, carry other diseases, like Bartonella, Babesiosis, and Ehrlichiosis. These diseases can greatly increase the statistical likelihood for morbidity from Lyme.  People can and do die from Lyme disease.  It has been proven that the disease can be transmitted sexually and from mother to child in utero.  It has also been proven that mosquitoes and flies carry Lyme and its accompanying infections.  I have Babesiosis in addition to Lyme.

Please also understand that I am in no way criticizing or underestimating the ability of the health professionals at Mount Holyoke College for not being the first professionals to detect my Lyme.  The devastating truth is that so many health professionals are grossly undereducated on this disease.  They are mainly educated based on the IDSA’s faulty guidelines.  Because of this, I feel I am obligated to share my information with professionals and potential patients alike.

The organization to which I direct people to learn more about Lyme is called the International Lyme and Associated Disease Society (ILADS).  Here’s a link to ILADS, and their treatment page:

http://www.ilads.org/

http://www.ilads.org/lyme_disease/about_lyme.html

Here are links to pages which list more common symptoms of Lyme, and 300 medical conditions which can commonly be misdiagnosed Lyme.

http://www.canlyme.com/patsymptoms.html

http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/318606-300-medical-conditions-related-to-lyme

Whew!  Well, that was a ton of information thrown at you at once. If you’re interested in learning more, I really recommend you start by watching the movie and visiting the ILADS webpage.  I know this whole message seems a bit random of me. Yes, sharing my experience is one way I am learning to cope with it.  I am choosing to share all of this information because I never thought any of this would or could ever happen to me.  This disease has greatly altered my quality of life: I have to take about 40 pills a day, I sleep about 12 hours a day, I’ve lost most friends because I don’t have the energy to be social, I don’t have the cognitive ability or physical stamina to attend graduate school or hold a full time job (I work from home 10 hours a week), let alone run 5 miles a day like I used to do with my team.  There is a light at the end of my personal tunnel.  Doctors say I should make a full recovery in time (several years), but whether I’ll be able to run again is questionable.  If doctors found my Lyme disease early, I would have recovered 100% with no problems.  I learned that this disease is way more common than most people are aware of, and once you have it for an extended amount of time, it’s really difficult to treat.  Like so many medical conditions out there, the key to good health is awareness and early detection. 

Thanks so much for taking the time to read my message.  It means a lot to me.  If you have any questions about my experience or my treatment, please don’t hesitate to ask.  I’d love to help bring health into your or your loved one’s life.