For the last week and a half, I have been looking at how and what I feel in my body through the lens of positive Lyme Disease diagnosis. What has come to my attention loud and clear is that so much of the stuff I dealt with I didn't even realize wasn't normal. I know that sounds ridiculous - we should know that pain and sore throats and headaches and swelling and weakness and brain fog and burning and tingling sensations and sudden weight gain and this and that and the other thing aren't normal, right? Well, once you deal with things day after day after day, you sort of lose track. People can get used to just about anything as time goes by; those things become your "normal". And even if you think that stuff is a little unusual, like I did, you get used to feeling like it is unusual. I just had learned to deal with the weirdness, deal with the ambiguity, deal with the discomfort. I got used to feeling uneasy about symptoms. I became slightly disconnected from it all and just moved on. I attributed the symptoms to one thing or another, not getting enough sleep or not stretching enough or eating too much sugar, or assumed it was some negative allergy reaction. And I often didn't think to bring stuff like that up to my naturopath, because, like I said, after a while, it just seemed normal. Plus, so much had improved - overall, I feel better than I did a year and a half ago, having dealt with Candida and having healed my gut and having regained weight and some energy. It was easy be so excited about that silver lining and hint of sunshine that I kind of ignored the enormous storm clouds all around.
Yeah, "normal" is so relative, isn't it?
Anyway, after getting a positive diagnosis and doing more reading about Lyme, I realized those things are NOT normal. Those things are symptoms of Lyme Disease. It was like someone turned a mirror to my face while screaming, "HEY! LOOK! PAY ATTENTION! YOU'RE SICK! DEAL WITH IT!"
Between my test results and symptoms, my new naturopath agreed: I am a picture of chronic Lyme.
Leslie is working on writing up her treatment plan for me, and I'll be getting that in the next couple days. In the meantime, she tasked me with contacting Lyme-literate MDs (LLMDs) to get an appointment. What makes an MD Lyme-literate? An awareness of how to treat Chronic Lyme and a willingness to prescribe long-term antibiotics. Most MDs will only give 2-4 weeks on antibiotics, which is the standard treatment protocol for a new infections. In most cases of new infections - like, right after you get bit - this is totally adequate, and people are just fine. But when Lyme lingers in the body, it is a whole different story.
The bacteria that causes Lyme, called Borrelia Burgdorferi, is a kind of bacteria that is referred to as a spirochete. Spirochetes are funky little bacteria with a spiral shape, as the lovely photo on the right illustrations. This fancy shape allows spirochetes to literally drill their way into body tissues. Because of this, they can get to areas of the body that other bacteria just can't, and therefore, cause a whole host of unfortunate symptoms. If the bacteria is treated early on, before it migrates to the tissues, it can be treated quickly and efficiently. But once it has the chance to drill in, bad things happen.
Let's look at another famous spirochete: Treponema pallidum, the bacteria that causes SYHPILIS! Yes, that's right, everyone's favorite STD is also caused by a spirochete. Remember learning about all the literally crazy prostitutes and horribly sick people addicted to absinthe in 19th century France? Ever hear about the terribly deformed children born to syphilis-infected mothers, suffering physical and mental birth defects of wild proportion? CHRONIC, LATE STAGE SYPHILIS DID THAT! And Syphilis still does that if left untreated - infection rates, disturbingly, are on the rise, and people's awareness of the disease isn't very good. When treated in the first or second stage, most people will recover completely. But without treatment, the syphilis-infected person will continue to have syphilis even though there are no signs or symptoms; infection remains in the body. Once it finally and inevitibly rears its ugly head, it manifests as a wide range of degenerative conditions and damages the internal organs, including the brain, nerves, eyes, heart, blood vessels, liver, bones, and joints. Signs and symptoms of the late stage of syphilis include difficulty coordinating muscle movements, paralysis, numbness, cardiac issues, gradual blindness, and dementia. This damage may be serious enough to cause death.
Lyme Disease, left untreated, does the same thing. Those spirochetes can reach serious havoc.
Once it reaches the point of a late-stage, chronic infection, two weeks of antibiotic don't cut it - the life cycle of the bacteria require long-term use of antibiotics in order to kill them all off. Since spirochetes hide in the tissue, it can take a long time to draw those little bastards out of the nooks and crannies of the body. Plus, there are often a number of co-infections that go along with B. Burgdorferi; I haven't been tested for any specifically as of yet. However, a previous test showed I have intestinal parasites, and my ND thinks that it may be due to a co-infection. Anyway, most MDs, for a variety of reasons, simply will not prescribe long-term antibiotics. They just won't. Doctors that do often get in trouble with Medical Boards, often getting sued and losing their licenses. Other doctors don't believe long-term treatment is necessary. It is crazy. Absolutely crazy. The controversy is covered VERY clearly in the documentary Under Our Skin; I would highly recommend attending a screening or getting your hands on a copy of the film. It is a huge - and tragic - conspiracy beyond what I ever imagined. And I even tend to jump to conspiracy theories.
Okay, so what next?
I need antibiotics, and the only way to get them is through a LLMD. It is hard to accept that the only real way to kick chronic Lyme is with antibiotics; I'm generally so skeptical of pharmaceuticals, and this is requiring some major thought changing and openness on my part. My ND thinks oral antibiotics will be fine for me, rather than needing IV antibiotics - this will be much more affordable. But I'm concerned about what they will do to my stomach and overall bacteria balance; I already deal with yeast imbalances and Candida, and I know I have a hard time with handling antibiotics in my tummy. That is where the naturopathic piece comes in, providing support to counteract the harshness of the drugs. On the quest for antibiotics and finding a LLMD, I spent about an hour earlier today calling a depressingly short list of five Lyme literate doctors suggested to me by my naturopath. This list is short not for lack of resources or information - it is short because there just aren't that many docs around that will treat it properly.
Two of the LLMDs located here in Minnesota (one in Minneapolis, and one about 2 hours north) no longer take new Lyme Disease patients because it is too overwhelming for their clinics. They are afraid to treat the patients appropriately because they don't want to get in trouble, they can't dedicate the time necessary to it, and therefore, they just aren't accepting us. The receptionists at both clinics sounded pained and absolutely heartbroken to tell me this news.
Another LLMD is located about two hours to the SE from Minneapolis. She is very highly regarded in the area, and is booked out until the end of March. I may be throwing my name onto her waiting list.
An LLMD in Wausau, Wisconsin didn't answer his phone. From what I can tell from various information I've found, he is the only LLMD in the state of Wisconsin, and I'm excited for him to call back.
The fifth LLMD on my shortlist is Dr. Bernard Raxlen in New York City, a highly regarded doctor in the field of Lyme who has very aggressive - and successful - treatment methods. My ND works at his Lyme clinic for a week each month, offering her naturopathic services to his clients. She sends many of her patients here in Minnesota to him, and she is suggesting that as a very good option for me. Interestingly enough, I could have gotten an appointment tomorrow at 2 pm or this Saturday. While I was on the phone inquiring about open appointments, the Saturday appointment got firmly booked. Sadly, tomorrow's open appointment is a little too short notice for me right now. Even more sadly, his next available appointment isn't until mid-January. My ND is hoping to pull some strings and get me an appointment sooner, maybe in December. It seems completely ridiculous that I may have to fly across the country to get the care I need.
But this is how the game is played, I guess.
I think the nice receptionist named Katie at one of the doctor's offices put it well when she said, "This is an epidemic, our medical community is not serving people adequately, and very sick people are being left without the care they need."
Once I find a LLMD, which will happen eventually, nothing is covered by insurance. I will be forking out large amounts of money out-of-pocket. I don't have this money. I will rack up more debt. But I look at it this way: either I pay the price now with cash and credit, or I pay the price later with my health, and possibly my life. I'm not being dramatic - people get very, very sick. My cousin is one of these people - she is fighting hard to maintain what health she has left, and without antibiotics, her body will not hang on. She knows it, and is working as hard as she can to get her hands on the antibiotics she needs as quickly as she can.
I'm curious to see what my naturopath is recommending for supplements, and can't wait to hear if she can get me into Raxlen's clinic sooner than January. Fingers crossed. I'm not so keen on the thought of waiting months and months to get in to a doctor, especially since I know I'm having a flare up in symptoms and I now know what it is. It is distressing to think about the bacteria being in my body and affecting how I live my life each day - I want it OUT!
So, more information to come. IN the meantime, I'm doing what I can myself - cultivating healing energy, working on acceptance, and eating lots of good healthy food and taking care of my body with sleep, exercise, and laughter.