As many of you know, I have struggled with lyme disease for a long time, having been in remission from chronic late stage Lyme and recently relapsing. I have decided at long last to make a concerted effort to spread the word about the disease in the best way I know how: bitching online!



I’m going to give you the skinny on this nasty bug, as well as point you in the direction of more thorough, official information on the topic should you wish to learn more.



Lyme was only discovered in 1975 and was named for Lyme, Connecticut where a cluster outbreak was found and the disease is said to have “been discovered.” The truth of the matter is that it’s likely some form of Lyme disease (or Borreliosis as it is scientifically known) has existed for some time. It is in the same family of bacteria as syphilis, known as spirochetes and identifiable by their corkscrew shape. This cute little slinky of a microbe can be deadly, in part due to its screw-like form which renders it skilled at tunneling into cells and lying dormant after traveling through the blood stream to get from one organ system to the next.



It has been widely ignored or ill-researched in the medical community until this decade for the most part. There is unfortunately a lot of political clouding about the issue, mostly owing to insurance companies who stand to lose money whenever treatment exceeds the “recommended” 20-30 days. The truth is that this time period is insufficient to kill and stop the illness and many people end up relapsing later on, finding themselves in the position of being chronically ill and requiring IV infusion.
Even in these late stages, insurance companies will still deny coverage and sometimes even refute the diagnosis. It was only recently that even the CDC (the Centers for Disease Control here in the States) began to revise their standards of treatment for early stage Lyme. General practictioners still perpetuate missed diagnoses due to unintended ignorance to the true signs and symptoms and appropriate, effective treatment protocol to kill this infection. Many will only diagnose Lyme in when the trademark “bull’s eye” rash is seen at the bite site, but most Lyme patients (said to be anywhere from 60-80% of patients) never develop a rash. Tricky.



Here's the deal: Lyme is a spirochete transmitted by certain ticks, classified as an arthropod-borne infection; however, it is only transmitted when the tick feeds for 48 hours, so if you find a tick on yourself that you can see, chances are it was an adult and hasn’t been sucking your skin for 2 days. Transmission is generally achieved by the pinpoint sized, clear-ish nymph age ticks. This is another reason why it can be so difficult to diagnose: early signs tend to be predominantly flu-like symptoms, and in the absence of a rash or even recollection of a tick bite, the chances are slim that ticks and Lyme will come up at your check-up. This is why it is so important to be informed!



To put it in further perspective once a diagnosis is suspected, I mentioned that Lyme is a spirochete, just as syphilis. Syphilis is the first great imitator and was frightening not just because of rampant STD transmission in the 18th Century and beyond, but because it strikes multiple organ systems including the brain and can be very difficult to detect, evading treatment and imitating other hard-to-diagnose illnesses and syndromes. Lyme disease is our century's great imitator. While it is not the same disease as syphilis, it is just as insidious. It may often be misdiagnosed as fibromyalgia, lupus, ALS (Lou Garrig’s disease), rheumatoid arthritis, chronic fatigue syndrome, multiple sclerosis, and countless other clinical illnesses. What’s worse is that the physical strain on the body caused by fighting the infection can trigger these illnesses in people who are susceptible. Many Lyme patients end up with long-term joint problems, fibromyalgia, and sometimes worse.



After being infected for 6 months (or thereabouts) without effective treatment, Lyme passes early stage into later stage, meaning the spirochetes have been in your blood long enough to hitch rides around your system and find other organ systems into which they can burrow. Here, they can lie dormant for years until some stressor to the body kicks up the immune system and triggers the spirochetes to wake up and have AT it! They have a short lifespan, which means they fly through generations and can quickly build immunity to antibiotics, so longterm treatment requires constant shifting and tweaking of treatment.



Once lyme reaches the late stages, it has damaged many systems of its host and is at a point where it is almost impossible to kill off every last microbe of the infection--especially those lying dormant. This is where it can both cause permanent damage and become chronic, or even life-threatening.



So what? Here’s what: a BRIEF rundown of its effects while active.



Lyme disease can cause:

lyme arthritis, similar to rheumatoid arthritis, but the attack on the body's joints is caused by an attempt by the immune system to attack the lyme within the joints and connective tissue)


cardiac and circulatory problems, orthostatic hypotension and fainting/blackout, pulmonary difficulties and shortness of breath


Fibromyalgia, a disorder thought to involve immune imbalance with unknown cause (thought to be triggered by physical trauma for many patients, such as a major injury or infection) that disrupts the mood, concentration, and causes the immune system to destroy muscles and connective tissue


fatigue that can be debilitating, especially when coupled with the cardio-pulmonary and musculoskeletory effects


it can disrupt brain chemistry causing insomnia, migraines and cluster headaches, recurrent fever, and depression, as well as other neurological issues such as encephalitis and seizures, tremors and difficulty concentrating, often described as “fogginess.”



Another helpful comparison comes to mind. I was once told by a former employer that I seemed to be going through everything his friend with HIV/AIDS was going through in the early phases of his illness. Other people (some unlucky souls who have even had both) have compared it to undergoing chemotherapy.



Now for the sob stories.



My doctor, who treats via western medicine, nutrition, and holistic care, has had Lyme as had her entire family. Her husband was heavily involved in researching treatment and therapy for Lyme and together, they ran a practice out of southern New Jersey. Her husband suffered multiple recurrences of the infection and in 2004, he died of cardiac complications. My doctor has set up a research fund in his name and continues to practice, her patients being almost exclusively Lyme patients by now due to her growing reputation and success in treating the disease. The best part of this woman is that she devotes herself to her patients and never recommends a medication or treatment that she hasn’t herself tried out (or that she hasn’t given to her own children). Not even the doctors who know the disease most intimately are immune.



Now I know having mentioned this and written such a long article I can’t get away without talking about myself. Please know that I shy away from this on all occasions, having survived mostly by denial up to this point, but I recently made a promise to myself to confront my illness. Those of you reading this are now a part of that process. I’m not asking for sympathy, empathy, pity—god, no. But perhaps I can put a face (or username!) to the issue if there isn’t one in your life.



I have been ill ever since I could remember, but I was not diagnosed properly until Fall 2004, after I basically self-diagnosed on an off-hand suggestion, researched, found my doctor, and sought out her treatment. I stayed at my mother’s and went to a state university so that I could rest and attempt to take care of myself. I was under treatment for about two years before I was declared in remission, after being estimated to have contracted Lyme around 1995.



I transferred to a university in New York City—my original plan as a high school student—and moved the Manhattan Fall of 2006. I thought perhaps the high-energy nature of the city was taking its toll on me, as I still suffered from joint problems, fibromyalgia, and assorted other issues. But I kept getting sick. Requiring naps. Falling asleep in class. Having heart palpitations. Shaking. I finally began to have what seemed like seizures, and thank god for this community. I hid this from my 3 roommates and on a fluke ended up having to come out with it to many people on dAmn. Finally I was urged and supported by my dA friends and talked to my doctor at my next check up. I was tested via the Stricker panel, a standard panel that was revealed by recent research to be able to detect chronic lyme, even distinguishing it from early Lyme, AIDS, lupus, and RA via the CD57 levels, which are only rock-bottom in CHRONIC Lyme. Guess who’s levels barely registered? I have been under treatment for relapse since then. I’m happy to say the extreme of my new symptoms has remitted, but I am still actively fighting the infection.



All right, that’s all you get on me.



Once the active infection has been taken care of, it is not possible to know if there is any dormant disease lying in wait because the tests for Lyme disease are ineffective, give many false positives and false negatives, and tend to only test for secondary and tertiary signs of the infection's presence.



Strides are being made every day to research and find effective testing and treatment for lyme, but in the meantime the epidemic continues silently and robs countless individuals of their health—internationally, not just in the U.S. and Canada!



Lyme and other coinfections (rocky mountain spotted fever, to name another common iteration of the disease) persist across the United States and Europe and continue to spread across countries and continents.



So, what can you do? This disease is so poorly known among the masses that the best thing you can do right now is inform yourself. Reading this article is a good first step. Share it with those you care about. Favorite the article and then call your mother, your father, your siblings, your friends, your roommates in to take a gander. Read further. Invest time in protecting your loved ones by being aware of the existence of this disease so that if illness strikes and things seem fishy, you can help your doctor diagnose the illness before it moves beyond early stages.



You can also write to government officials regarding bills that have to do with arthropod-borne illnesses or insurance protocol—this benefits other illnesses directly as well, you can imagine.



For the wiki addicts, there's always Wiki:Lyme. This is a good place for a quick, easy-access run-down of early signs and symptoms, as well as a good place to find other quick access details of the points outlined in this article.


Then there's those committed to understanding and finding effective means of diagnosing and treating/curing Lyme.
the Lyme Disease Association is an American organization who has just opened a research center thanks to the donations of the public.

ILADS, the Internationsl Lyme and Associated Diseases Society, is an international, multidisciplinary medical society founded in the same spirit as the Lyme Disease Association, only it spans across countries and holds annual conferences for doctors to come and share the latest knowledge. Their website also has additional information and brochures.



Once again, you can give this article some love and spread the word. I have made a stamp for the stamp-happy among us, which you can thumb in your journals or even link off-site in your other blogs, or just +fav as well if you don’t feel as aggressive about “I SUPPORT RARR!” items.



Lyme isn't just for your family dog anymore. You are your own best advocate!



Thank you all for your support .