Monamorphosis: July 2013

Tuesday, July 9, 2013

Media Pieces on Lyme and a Quick Update

NYTimes: When Lyme Disease Lasts and Lasts

Often misdiagnosed and mistreated, chronic Lyme disease leaves thousands of people physically and mentally debilitated and without a medically established recourse

I am sure many of you heard or read about the New Yorker piece on Lyme Wars. Terri Gross also interviewed Michael Specter on NPR about this. I have yet to finish either, and to be honest, I think it's out of reluctance because I am tired of hearing the same old thing from IDSA zealots. Yes, I acknowledge that the press and the media have paid more attention to chronic or late-stage Lyme Disease recently, but I still don't know that the general public really understands the entire picture.

My friend forwarded me the above article, "When Lyme Disease Lasts and Lasts," and though I was glad the media finally used the term "chronic Lyme" and depicted a woman who was diagnosed with MS but who actually had Lyme, I still feel the term "Post-Treatment Lyme Disease Syndrome (PTLDS)" used in the article just detracts from the seriousness and reality of what that (PTLDS) actually is - LYME DISEASE! PTLDS is Lyme Disease, is it not?? PTLDS is a term the IDSA used, I thought, to make chronic Lyme sufferers feel like there was no answer or solution. I am open to hearing your comments on this one.

To be honest, I am so exhausted reading about the Lyme Controversy. I am tired of how even a possibly well-intentioned article may confuse the public. I am sick of this controversy preventing people from understanding that those with Lyme Disease can suffer relentlessly and in a way that most people can never understand. Not just because of the disease but because of a medical system that treats Lyme patients like they are crazy, 'making up' an illness, depressed, etc. So I am happy to hear your comments but I think it will be a while before I sit down and read the Lyme Wars. I am fed up. I won't stop fighting for Lyme advocacy, but I may just stop listening to the negative voices I heard through the last 8 years of my life.

In other news, my sincere apologies for not posting recently. I have a lot of material, but have so much going on, including 3 moves in 3 months. So, I will be up with more information soon! I also apologize for not responding to many emails to my monamorphosis@gmail.com account. I will get to those when things calm down.

Until then, remember, no matter what you read or hear, you CAN and WILL get better if you believe it. It may seem like there is no light at the end of the tunnel, but there IS. I am proof of it. Don't give up hope. There is ALWAYS HOPE.

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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Tuesday, July 9, 2013

Media Pieces on Lyme and a Quick Update

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

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