1) Not everyone gets a bulls eye rash. According to ILADS (International Lyme and Associated Disease Society, they believe that 50% of people get the classic bulls eye rash. That means HALF of people do not have a rash! If you have been bit and are waiting for a rash to appear, don’t assume you don’t have Lyme because you don’t see a rash. If you see a tick, either buried or attached, I recommend going to a Lyme Literate Doctor, and they will put you on preventative care and get the tick tested. It’s easier and more accurate to test a tick to see if it carries Lyme disease. If the tick tests positive for Lyme, then the Doctor will give you a test and go from there…
2) Lyme disease occurs all throughout the connecting states throughout the United States. Lyme is actually found in every single continent, except Antarctica. It is a worldwide epedemic. So many people believe that Lyme is a “New England” thing or a Lyme, CT only thing. In fact, a man I know went to a Doctor in my town with a tick buried in his armpit was told there was no way he could have Lyme, as it wasn’t around here in NH, it was extremely rare, and that the Dr. lived in or near CT for years and never “caught” Lyme…
3)Lyme Disease is incredibly hard to diagnose in humans. The standard test, called the ELISA test, the one you would get at a hospital or a non -lyme-literate doctors office, is as inaccurate as 70% showing false negatives. Seventy percent! Another test that is used, that is more accurate in Lyme testing is a PCR test. To complete this test, you start taking a high level of doxycycline and over the course of a few days, you pee in a tube first thing in the morning every other day 3 times, and send it off to the lab. 2 of my 3 tests had blood in them, (who knows why) and the third came out negative. This test is more accurate and more sensitive than the ELISA test is, but will still show false negatives. If you aren’t peeing the little bastards, then it isn’t going to come up.
Another test to test for Lyme is called a Western Blot. This is the test I would recommend the most. It shares the most information, IgM and IgG (showing past or current infections) and there are several different bands on this test that are indicative to lyme. Unfortunately, the CDC version of a positive test is different than a lyme literate Dr’s, as well as Igenex, one of the more popular companies that does the test. Here is a link if you would like to know more about the bands significance, etc. as well as some of the other tests. http://www.igenex.com/labtest.htm
My Western Blot test came back IDSA and CDC positive and here are my results:
31 kDa IND
39 kDa +
41 kDa +
18 kDa +
41 kDa ++
I should note that a good doctor will also treat you based on a clinical diagnosis as well. Go see a Lyme literate Doctor if you think you may have Lyme.
4) If caught too late, Lyme disease can become chronic. This topic is controversial, as many Doctors will tell you that once 28 days up you are good, all better, done treatment, and that’s that. There is no evidence that really says that Lyme is good and gone once done treatment, it is a matter of keeping your immune system happy and your symptoms under control.
5) Most patients get worse before they get better while on treatment. This is called a Jerisch Herxheimer reaction, or a herx reaction for short. A herx reaction is a reaction to endotoxins released by the death of harmful organisms or bacteria within the body. So, it is essentially the die-off of the little bastards. Let me tell you, feeling some of these horrible reactions and new symptoms, I sometimes wish I had never went and saw Dr. S and dealt with the complete loss of feeling of my left leg, and allowed myself to be sleepy the rest of my life. I am worse now than when I first walked into his office September 2012. I was way more functional and still had a decent quality of life, just lost some functionality. I was far more independent. But I know I would have gotten worse and worse. And Dr S. didn’t treat me like I’m crazy (he still doesn’t but he might think I’m one step short of the cuckoo’s nest now haha) and he figured it out when no one else did. I have a ways to go now and there is no turning back for me at this point.
Herx reactions can be HORRIBLE. The main thing is trying to control and know your limits. As Dr K told me, having super strong reactions can end up being counterproductive and to let them know. I have always had a hard time doing this and will need to get better at it, especially because they aren’t 10 minutes away from me like Dr S, they are an accompanied plane ride away. I have e-mailed Dr. S several times with questions throughout treatment, almost always because my parents or Dave made me, but usually after a few days hesitation. I know I have definitely endured a lot more then I should have because I hate sounding like a whine ass. I more often then not have spent days vomiting or massive diarrhea, or a combo of the two at the same time (super duper awesome I know 😉 ) , completely parkinsonsy, or nearly a complete vegetable because I didn’t want to sound like a whine ass. At one point, I think my Dad even called Dr. S. because he was beginning to really get worried and was getting pissed at me for not saying anything and told Dr S that I wasn’t one to complain and I tend to downplay things when people ask me about how I am doing.
6) Lyme disease can be fatal: the lyme bacteria affects every organ and tissue in your body, including your brain and heart. Well, I can’t necessarily say that LYME is fatal, it is all the damage and complications that it causes that makes the disease fatal.
7)The number one cause of death in Lyme patients is suicide. I have read numerous things about this, and I am not sure why. Maybe they are sick of being sick and not getting treated? Is it from mental issues and depression from the disease? No support system? I don’t know.
8) Lyme disease often comes with other fun bonus diseases. Other common tick borne diseases that you have probably never heard of include: Bartonella, Babesia, Erichliosis, Anaplasmosis, and Rocky Mountain Spotted Fever. Unfortunately, it is even harder to test positive for these co-infections. Some of these co-infections have hundreds of strains, literally hundreds and our super duper up to date testing only can test for a few of them. Once again, good Lyme Dr. = clinical diagnosis. I only tested positive for anaplasmosis, but have been on a bartonella treatment and will be again, and will likely be put on a babesia treatment due to my symptoms. To learn more about these other co-infections, check out : http://www.lymedisease.org/pdf/coinfections.pdf
9) Not all ticks carry Lyme disease. Some ticks, like the American Dog tick, are less likely to carry lyme. The most likely tick to carry Lyme disease is the deer tick.
10) Borelia bergdorferi, the bacteria that causes Lyme disease, is a spirochete (spiral shaped get into tissues) bacteria and is closest related to syphilis. In syphilis, they believe that there is such a thing as late or latent stages of the disease, and believe without appropriate treatment the disease will go into this long term form that effects every system in your body, just like Lyme.
11) I have done a bit of research if Lyme can be spread in ways other than transmission of a tick. Mosquitos have indeed tested POSITIVE for the borrelia bergdorferi, (Lyme bacteria). Although it has been found that those aren’t a likely vector for the disease for a few reasons including: mosquitos don’t take very long to get a meal and to contract Lyme, you have to have a tick be on you for a longer period of time. Ticks also have a protein that makes the bacteria last longer in them so they are a more sustainable host for the bacteria. So, not a likely vector but Lyme isn’t just in ticks!
12) Going along with my last fact, there has been evidence that the Lyme bacteria has been found in semen, and also evidence that Lyme is also spread from placenta to fetus, and has also been found in breast milk, but everything Lyme research wise seems to be kept under the radar. There is also “theoretical risk” of this disease being spread via blood. According to the American Red Cross, if you have a “current infection” of Lyme, you cannot donate blood within a year of infection. Wait… so I know they aren’t necessarily recognizing this disease as long term, but wouldn’t it be safe to assume they believe there IS a risk of transmitting this disease through blood? Hmmm.
Can you imagine if it came out that Lyme could also be a sexually transmitted disease? It is very common for partners to both have Lyme, but the question being, is the disease being transmitted sexually or is it because the couples are both living together in a tick infested area. Due to money, Dave has not been tested for Lyme, but we are both certain he has this disease too. As time has passed on, his memory has gotten worse and worse, and his muscles and joints are usually screaming at him by the end of the day. But was it our hobbies together, or did we make each other sick?
Sources: ( blog.petcarerx.com, http://www.trutv.com, http://www.health.ny.gov, igenex.com, anapsid.org, http://www.lymedisease.org/pdf/coinfections.pdf, http://www.lyme-disease-research-database.com, ILADS.com, lymecenter.net, lymeinfo.net, http://www.rosemarydrisdelle.com, americanredcross.com)