Monamorphosis: About My Blog

You may notice that I am not concise. I have a page "about my blog" on my blog. I've never been one to keep things short.

Regarding my blog, I decided to keep Lyme out of the title because I think this is really more about a journey, transformation, and huge life change rather than just a disease. To call it something just to do with Lyme would minimize the significance and incredibly terrifying and also positively transformational effects the last 4-6 years of my life have had on me because of this disease.

Also in my blog, I have decided to go TMI. Too Much Information. You know the kind that can make some people uncomfortable in the way you feel when you see Ben Stiller in a movie.

Some people are comfortable with this; others are not. This I have learned through years of sharing my often horrific physical and emotional experiences with friends and family. Some people gasp or roll their eyes or run to the other room completely horrified by what I tell them; others just sit with me or laugh. But I have lost the ability or desire to filter my inner thoughts. In fact, I didn't have much of an inner filter before I got sick. And I am grateful for this, because this disease is an epidemic that ruins lives and it needs to be told without concern for comfort level in order to create a movement of change.

My only interest in keeping this experience private would be because I am a human rights attorney and would like to one day use my degree again to fight injustice in this world, and well, unfortunately, I think future clients may one day be freaked out by some of the stuff I write in here and say, "that's my lawyer!?!??" I hope they will understand that this experience, though traumatic in so many ways, will give me a gift of literally fresh new eyes through which I will the world (and already do see it) and the degree of compassion, energy, and devotion I will carry into my work will be better because of my experience through this long disease process.

Other than that, I am an open book. I am not someone who is embarrassed sharing any of my feelings or thoughts; in fact, most of my friends know I am quite outspoken on that and definitely TMI. But, in order to expose the secret of this epidemic disease (and it is a huge secret, explained in the "Great Lyme Controversy" page) and reveal how incredible devastating this disease is, I MUST reveal the horrible things that I and others have experienced, even if a bit well, unflattering and not so pretty.

I know a lot of people who are not comfortable revealing their really horrifying moments with Lyme to even their close friends, and certainly not on an Internet-accessible blog. So I'm glad I was naturally endowed with the inability to filter or worry what others think and I can bring attention to this extremely disabling and misunderstood disease.

And I must add that keeping my friends in the loop with excessively long and revealing email descriptions/conversations about what actually happens to me through this torturous but 'invisible' disease has allowed me to feel comfortable accepting help from them (which by the way has been incredibly generous). My friends have been amazingly receptive and supportive to everything I have told them. They have taken care of me like family.

For this disease to get the recognition it deserves and the attention it needs so people can be PROPERLY diagnosed and PROPERLY treated and so the medical community and insurance companies can support rather than blasphemize (yes, I made up that word) patients like me, it is my moral and ethical DUTY to go all TMI in this blog. There is no shame in exposing what really happens to you when a little tiny tick transmits this disease to your body and it goes unchecked for years. I will not lie, the shit that happens to you from the disease and the treatment is SCREWED up. I have never even read of a disease like it and never imagined one so inhumane could exist. One doctor even wrote an article called, "Lyme: an Inhumane Disease of the Brain."

Also, another word of caution. I drop a lot of f-bombs in my blog. It helps me express my emotions. I must admit I drop more than average expletives, but find it has been a part of my cathartic release of excruciating physical and emotional pain. In fact, uttering expletives when in pain is a sensible policy, according to this research study: "Swearing helps to reduce pain." Permission to swear, I love it!

If you don't like it, please just insert another emotionally appropriate word.

Also, please comment on my blog, as I am curious to know what you think or what other QUESTIONS you might have. People ask me things all the time, that I wouldn't even think of, like "does your picc line hurt?" so feel free to ask me. I'm pretty honest and comfortable with sharing my story, so there is a good chance I will give you an answer.

So, if people are uncomfortable with my TMI, I make no apologies. It is who I am and the story needs to be told.

With love,
Mona

DEFINITIONS

Late-Stage Lyme Disease: An infectious bacterial tick borne disease that is transmitted through the bite of a tick, though many doctors believe it may now be transmitted through some infected fleas and mosquitoes. When first bitten, if a person develops a bulls-eye rash and is aware that they have been infected, the disease is easily treated with antibiotics. However, only 40-60% of patients develop the classic bulls-eye rash, called Erythema Migrans. Additionally, the rash is often invisible in people with darker skin, like me. When the tick bite is missed and a person goes months or even years without knowing that they have been infected, the disease enters its late disseminated stages, infecting many if not all systems of the body – limbic, neurological, physical, nervous, psychiatric, cardiac, and the list goes on. At this point, it is excruciatingly difficult, painful, and expensive to treat (note most Lyme treatment is not covered by insurance and highly controversial). Years of antimicrobials and complicated treatment plans (including many holistic methods of healing) are necessary to heal a late stage Lyme patient.

Herxheimer reaction ("Herx"): definition should be "torture." Can be used as a noun or verb as in "I herxed so bad I felt like I was run over by a truck and then dragged by a pack of wolves through hot dry sand." Scientifically speaking, a herxheimer reaction is what occurs during the treatment of Lyme disease and its co-infections. The common misconception is that when a patient is treated with meds, it should be all uphill from there. Medication should make you feel better, right? Very wrong. When spirochetal bacteria (like Lyme) is killed off, it releases a massive load of toxins in the body. These toxins are "neurotoxins" and "endotoxins", which putting it simply means that it is a toxin to the brain and the patients' organs. Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process (hence the need for tons of detox supplements, herbs, and strict diet). Herxing can cause a whole host of symptoms, ranging from seizures, migraines, excruciating pain, dizziness, relentless hours of crying, anxiety, heart rate issues, pain, inability to breathe, insomnia, episodes of rage, confusion, memory loss, and much, much more. This, therefore makes Lyme treatment grueling, and very similar to cancer treatment with chemotherapy.

Co-infection: another Lyme-like infection transmitted by the tick that is tantamount to having another Lyme Disease, often with worse presenting symptoms for certain patients (like me). Because the late-stage Lyme patient (almost all of us have co-infections) has been so ill for years, the immune system is more compromised and unable to handle all three diseases (though they are all blanketed under one disease, Lyme). Treatment is also very complicated because the doctor has to be sure to address each co-infection and Lyme and do so in a very delicate balance so as not to Herx the crap out of the patient and on the flipside, to make sure Lyme or co-infection are treated aggressively enough so as not to experience a relapse or flare of symptoms. I have experienced both of these unpleasantries and let me just tell you, they are frickin' miserable.

Babesia: a co-infection of Lyme. Babesia is my worst co-infection, hardest to eradicate in the co-infection world (IMO), causing horrible vertigo, dizziness, crippling depression, sweats, nightmares, fevers, fatigue, air hunger (inability to breathe; that’s why I have an oxygen tank and take beta-blockers), heart palpitations/chest pain that make you think you're having a heart attack, severe cognitive impairments, and neurological difficulties.

Bartonella: another co-infection characterized by migraines, confusion, joint and muscle pain, spaciness, feeling disconnected from your body, cognitive impairments, bone-breaking chills, numbness and tingling in extremities, fatigue, depression, extreme agitation and anxiety. Note that all these symptoms overlap to some degree with each co-infection and with Lyme so it’s often difficult to determine what is the cause of what symptom and sometimes many infections are the culprit. My first 3 months of Bartonella treatment, I became so confused the first 2 weeks that I got LOST in a grocery store (no joke), and put the scissors in the freezer by accident. I also called people and forgot I was calling them and walked away from my dialing phone several times to come back and find someone talking. Truth is stranger than fiction.

LLMD: a Lyme-literate medical doctor. Lyme patients love them. We Lyme patients are very educated about our disease - we have to be; so few doctors know about the severity of late-stage Lyme, most have no idea what a ‘co-infection’ is when I tell them, and most don’t know how to diagnose or treat it. I had a doctor ask me if Lyme was hereditary!!!! wtf? There are so few LLMDs for the huge number of us and on average, most late-stage Lyme patients see 9-15 doctors (over a period of years) before they get properly diagnosed. Seeing a regular infectious disease doc would be suicide - he/she would put you on 28 days of drugs and if you were sick after that, tell you that you have chronic fatigue or what IDSA docs notoriously refer to as "post-Lyme fatigue." Ha! I was on an 8 month-wait list for my last LLMD, and flew to DC every 3 weeks to see him - one of the best LLMDs on the East Coast. Not to mention he costs a small fortune because no LLMDs can take insurance. This disease is a huge political controversy and I explain in detail in one of my posts, entitled: "The Great Lyme Controversy." The controversy is so great, in fact, that the Connecticut Attorney General brought an antitrust investigation against the IDSA (the enemy who writes insurance guidelines for treating Lyme and works with the CDC). The investigation “uncovered serious flaws in the IDSA’s process for writing its 2006 Lyme disease guidelines….The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions. Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification….My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.” See http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284.

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All About Late-Stage Lyme: the Disease, the heated Controversy, and the Repeated Misdiagnoses

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