The Face of Despair and Its Nemesis, Hope

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It is a dark, rainy, chilly day, so this title just poured out of me after reading this morning that two more Lyme disease sufferers gave up the fight against the disease and its chronic, torturous pain and suffering. It is fairly common for individuals with chronic (persistent, undertreated, or untreated) Lyme disease and co-infections to commit suicide.

Why Lyme disease sufferers? Because we are denied treatment for a persistent, debilitating, destructive, degenerative disease. Some medical researchers are connecting Lyme disease to Multiple Sclerosis, ME, ALS, Alzheimers, fibromyalgia, chronic fatigue syndrome and many other degenerative autoimmune diseases. In mainstream medicine, though, the causes for these diseases strangely continues to elude researchers and medical professionals while at the same time making pharmaceutical companies billions in profits on medications that merely control symptoms and manage pain.

It is criminal that a bacterial infection that is often accompanied by malaria-like protozoa and even parasites (known as co-infections), is not treated aggressively. Anyone diagnosed with Lyme disease is given 3 weeks of doxycycline, an antibiotic that has mysteriously seen shortages and now costs a small fortune to buy. That is all that they are given, all that “treatment guidelines” recommends and all that most physicians feel comfortable prescribing. What if you aren’t well after 3 weeks on that one antibiotic? You are then diagnosed with post-Lyme disease syndrome. Now, if you had a staph infection or strep and your symptoms did not resolve after a course of antibiotics, your physician would continue treatment, look for other infections, and not just blow it off as “post-staph syndrome” or “post-strep syndrome.” Seriously, how idiotic can you get?

But if you are one of the millions of people who was bitten by a tick, contracted Lyme disease or one of its co-infections, and you do not get well after three weeks of that one antibiotic you are out of luck. I actually had three courses of antibiotics, felt better while on the medication and for a couple of weeks afterwards but always relapsed within two months of cessation of treatment. After a few years of suffering, a loss of my life as I knew it, my inability to function beyond the basics, inability to shop without resting and needing help lifting items into the shopping cart, sitting while one of my kids stood in line, and then trying not to pass out while the cashier rang up my purchases. After being in so much pain that I just laid on the couch all day long for almost 2 years, not being able to sit at the computer, not being able to read and comprehend what in the world I was reading, not being able to remember where my doctor’s office was located, not being able to remember to pay bills (thank God for online bill paying services with email reminders), I finally found a doctor that treated me with long-term antibiotics. I got much of my life back. I was still very sick, and I was still unable to do much that I had previously undertaken in my normal life, but I could walk and endure short shopping trips, I began to get a little bit of my cognitive ability back. But then I plateaued. My LLMD (Lyme-literate medical doctor) was at the end of her run as a Lyme physician (cardiologist who specialized in heart complications caused by Lyme disease), and let me go as a patient right before she was going to start me on plaquenil for a co-infection that will interfere with Lyme treatment if it isn’t addressed first. She no longer treats Lyme patients.

Insurance companies kick physicians out of their network if they treat Lyme disease beyond the IDSA and CDC recommendations. Medical boards fine and penalize physicians who treat Lyme disease long-term, even though time after time patients began to get their lives back, regain health, and make progress.

I don’t even care about the motivations behind medical boards, medical associations and even our government insisting that Lyme disease is easily treated with three weeks of one particular antibiotic that is now very, very expensive and facing shortages. There are a lot of theories, a lot of speculation, and a lot of anger over what could create such an attitude toward a disease that is destroying the health and lives of hundreds of thousands of people around the world.

The fact is that no one is looking for a cure. Researchers are all working on developing tests and vaccines instead of a cure. This is a bacterial infection. Seriously, if it cannot be treated properly with a long-enough course of antibiotics, or a variety of antibiotics, then something is very, very wrong.

I live with the effects of persistent Lyme disease, under- and untreated co-infections, pain, fatigue, discouragement, frustration, and anger that our world is so corrupt that profits for a few are so much more important that the health and welfare of many. The worst part is the dissemination of misinformation by the United States Federal government agencies such as NIH, CDC and more. But with big pharma executives in key positions in government now, what do we expect?

Abuse of power and corruption have always been the downfall of every advanced civilization in history. While sick people suffer and give up, even commit suicide, most people continue living their daily lives oblivious to the dangers everyone faces in a future where this type of environment exists. Curing diseases is low priority. Treating symptoms, treating diseases over and over again (chemotherapy causes cancer, you know), and making a lot of money for the medical industry is the goal.

In the meantime, two more Lyme sufferers have given up and are in no more pain. More will do the same because there is no hope for them. They are denied treatment, comfort, and proper care.

Good thing I am not suicidal. I have never even considered suicide, even when I was at my worst. But then again, I was never completely bed-bound, unable to feed myself, in constant, excruiciating pain. I am high functioning. I have gotten much of my life back, even if I am a mere shadow of my former self. I can drive, I can garden a little, I can cook occasionally, and I can shop for food now without fearing collapse or fainting. I got long-term treatment, learned how to change my diet, and consume a lot of probiotic foods and drinks. I do what I can and am thankful that I function as well as I do.

I wear no rose-colored glasses, though. What I am dealing with is degenerative. Just like MS, ALS, Alzheimers, and many of the other diseases where live borrelia spirochetes have been found in brains upon autopsy, there will be a loss of functionality over time. I fight it with good food, exercise, and as much optimism as I can muster, but I am honest with myself and realize that I will most likely have a shortened life, and the end will not be pretty. There is always just the tiniest bit of hope that the truth will come out about Lyme disease, that long-term treatment will be available for all, that somehow a cure will be found. I do hold onto that. But I try to not think much about the future.

I am in school now but have no long-term goals. I am enjoying the process, the journey, the experience because that is what I have right now.

The key is hope. May I, and all of my Lyme friends, always have enough hope to ward off despair. May we never give up. There is always hope.

Read stories of those who have lost their fight with Lyme disease.
Lyme Friends Memorial

“Why You Should Be Afraid of Lyme Disease,” by Pamela Weintraub, CNN.com.

Treatment of Amyotrophic Lateral Sclerosis and Multiple Sclerosis with Anti-Lyme Disease Antibiotics Being Used to Treat Lyme Disease

ALSUntangled prevents ALS cure by disinfo for profit?. ALSUntangled does not recommend any ALS sufferers be tested for Lyme disease. Why?

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