Monamorphosis: May 2012

Wednesday, May 23, 2012

Molly's Story

A great young woman I met via email, Molly Franken, who found out about my story on the California Lyme Disease online support group, posted an incredible synopsis of her story. She is from LA, and though we have never met, she has been in touch with me since I recovered from Lyme in January and before I slipped back into something that feels like a relapse. She has been emailing me and checking in on me constantly and I want to thank her for reminding me about the importance of sharing my story. Also, I want to thank her as she inspired me to get back to writing on my blog.

I want to share her eloquently written story. It shows how this disease strikes so many women who are young, driven, independent, and who suddenly because isolated and sick. Molly is in the business of making movies, and most recently, in the business of writing words. She is a strong woman who was taken out by Lyme but will be back at it one day. For now, Molly, I commend you on your strength, and your beautiful words that you have shared about your story. I think we will learn a lot from this experience and be able to help others with it....One day, Molly and I will be mt biking and drinking margaritas (when we meet in person, that is) and we'll show the photos of our Lyme-free selves to y'all!

http://www.theconversation.tv/wellness/my-journey-with-lyme-disease/

Tuesday, May 22, 2012

Remembering Possibility

Hi all,

Apologies for being out of touch for so long. I have been meaning to write about my new life as a Lyme-free Mona since January when I found out my tests were negative that month. Of course, we all know Lyme is a difficult battle, with not always reliable tests to tell us when the disease is gone. Though I felt better than I had in 6 years and had negative tests, I wasn't out of the woods. We all know Lyme is a disease unlike any other disease we've come across. It makes no sense, affects ALL systems of the body (including your mind), and is different for each patient.

Though I wanted to write excitedly about my amazing progress at the end of last year and beginning of 2012, I unfortunately have hit a dark patch again. Numerous factors contributing to this: a parasite cleanse, a kidney infection, overexertion, emotional stress, throwing out my back. But in reality we (my doctors/naturopaths/healers, you know that team that we all have that costs us every cent in our bank account but is the only thing keeping us going) think I may have a relapse of either Lyme or Bartonella. Toxicity is present for sure, and as soon as I come down from this rollercoaster ride, I plan to write a DETAILED post about everything I did to get over this disease. I also plan to write informational guides for Lyme patients, advocate for legislative changes for Lyme patients, but the universe isn't letting me get to that part as fast as I'd like. So I am trying to be patient. I had my big emotional breakdown a week or so ago, crying, panic attacks, wondering how it was possible after 6 years of being sick (but only 4 years of treatment), this disease still has a hold on me.

Well, I realized I think too much. I try to figure out HOW to get from point A (not well) to point B (150% healthy). I realize I have no idea how I got from Point B (healthy) to Point A (completely disabled). So as much as I want all the answers and someone to tell me what is happening every step of the way, Lyme doesn't provide that type of certainty.

But I do remember that no matter what, in wanting all the answers, sometimes I believe it's important for us to just remember the POSSIBILITIES of healing. What the mind believes, the body achieves. I truly believe the reason I healed myself (current setback excluded) was because of this belief. I had quotes (at least 50) plastered all OVER my bedroom for years. I repeated affirmations. I made vision boards. I visualized my body getting better. I still do. Keep believing. That belief transforms into REALITY. It may take months, years, decades, but this belief CAN bring you healing. Believe that you will be better. No matter what ANYone else (patient, doctor, person) tells you. Mind over matter has truth - I have lived it.

I was just at my LLND's office a month ago and he was telling me something I read in a book recently as we looked at my blood under a dark field microscope. If doctors were to take my blood (or anyone's for that matter) and put it under a microscope, and subsequently stress my body (even a mile away from the office where that sample of blood was sitting), the blood (that is now a mile away from my body and under a microscope in the doc's office) would RESPOND negatively to the stress, the SAME WAY the blood cells in my BODY respond! That is, the blood cells would still feel the stress even when OUTSIDE of my body. HOW IS THIS POSSIBLE?

There is clearly a connection from the body to cells that is above and beyond what science can explain. Some higher power, consciousness, energy, whatever you will call it, is present in the ability of our cells to know stress. Consequently, our cells must have the ability to know healing on this level. There are things that affect our body that science cannot explain!

Keep believing in yourself. I promise you can get there. I look forward to getting back to healthy so I can share with you what I did to get there. For now, back to dealing with toxicity and possible slight relapses with Lyme or Bart. All hope is not lost. It is the final cleanup, the storm before the calm.

Tell your heart that the fear of suffering is worse than suffering itself. And no heart has ever suffered when it goes in search of its dream.

-- Paulo Coelho

One of my favorite TED talks that I haven't seen in a while. I am sure many of you have seen it but it is a reminder that ANYTHING is possible and we CAN heal ourselves. It is WITHIN ourselves to heal. http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

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.

Monamorphosis

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Wednesday, May 23, 2012

Molly's Story

Tuesday, May 22, 2012

Remembering Possibility

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

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