Into the bargain bin..... AGAIN

Sleep eludes me, yet again. I've been told the insomnia is part of the Lyme, but tonight (well, last night really) it's also because of my emotions. Well, also due to the Lyme, so there you go. It's hard to believe that this is real. I slept from 2-4:30, sort of.

The antibiotics are working I'm told because I feel even worse than I have. I saw my doctor yesterday. On the 45 minute drive, I was wondering how I would answer the questions "How are you feeling" and "Where is the pain?". The first is fairly simple... Umm, like shit. The second feels ridiculous to answer because the answer is my head, my neck, my teeth, my left ear, my lower back, my abdomen, my upper back, my legs, my feet and hands. Oh, and now my lips and tongue too. It's hard to tell what is the Lyme's natural progression, the Herxheimer reaction or other side effects from medications, I honestly can not remember the last time I was pain free. I really can't. I have been living with some kind of intense body pain everyday for years. And, for years I've been told I was drug-seeking, under too much stress, feeling pain from depression, among other things. I am 34 and have already had 2 major surgeries and another possible surgery sits eerily in the not so distant future. I'm angry that I was made to feel like I was crazy, dramatic, or wrong about the fact that I KNEW something was going on in my body. I listened to the professionals with the M.Ds and P.H.Ds behind their names because that is supposed to mean some kind of superior knowledge. No knowledge surpasses our own intuition when something is going on within us. If nothing I ever say means anything to anyone other than the next line, that's fine by me, as long as one person hears it and believes me. If you feel something is going on with you or your body, BELIEVE YOURSELF, leave no stone unturned and get to the right place to help you. Seek help outside the box, away from the corporate/insurance run medical system we are surrounded by. I have blamed myself for years, thought something (other than an illness) was wrong with me, didn't have faith in my own feelings and intuition, and have lived with pain that is unacceptable. And, now I have a chronic disease I will probably have for the rest of my life.

Yesterday was difficult. My latest bloodwork showed some significant things. But, before I get to that I need to tell you how the screening for Lyme is done. If you or your doctor believe that you may have Lyme disease, they will run something called an ELISA test. If you test negative on your ELISA test, they rule out Lyme and move on to other testing and diagnostics. The ELISA test is ancient, is not sensitive and has a false negative percentage over 50%. Yet, this is medical standard. Why don't doctors just start with a western blot test? Lyme disease is known to inhibit the immune system and twenty to thirty percent of patients have falsely negative antibody tests. I tested negative on the ELISA. Please keep in mind, that the only reason I even got tested with ELISA was because I found a doctor (out of my network) that was willing to dig deeper into why I was having the uterine problems. She ran further blood tests to seek out any imbalances. Although the ELISA test was negative, she found significant problems with my body as far as blood sugar, vitamin and mineral absorbency, cortisol and adrenal function.

I had heard a rumor that I should not settle with just the ELISA test if I truly believed there was a chance I had Lyme disease, it felt true in my gut, so I listened. I asked my doctor to please run additional tests and paid $600 out of pocket for them. My western blot was positive and I was referred to a Lyme specialist. I saw this doctor yesterday for the second time. Apparently my blood results show a severe case of Lyme infection as well as co-infections (Ticks carry more than just the Lyme bacteria). I am in late stage Lyme disease. I have neurological Lyme disease. That is difficult to write. Because it hurts my heart and because I have sporadic Lyme induced dyslexia. Fun stuff. The numbers are so significant that even the CDC and ISDA's very "high" standard for positive testing has to acknowledge that I have Lyme disease. This is complex, but in a nutshell the truth about this disease is being suppressed, the research has far surpassed the guideline standards and there is rampant corruption due to the ties the government agencies (meant to protect us) have to the health insurance companies (among others). Apparently I am "lucky" that my numbers are so pronounced on my blood tests because no one can dispute my disease, as this is common. So, if I can keep my insurance, I'll be covered for treatment. Unfortunately the treatment that's "accepted" will not help me, so most of my treatment will be paid out of pocket. Which I will have to figure out a way to do because I am progressing so rapidly and I want my body back. I'd be lying if I said I wasn't scared. Some of the episodes I've had may possibly have been small strokes. I am now told that I am looking at a minimum of 5 years for treatment. That is basically the rest of my thirties. I'm in shock. I never thought my life would look like this. The Lyme has dismantled my immune system, caused damage to my system (some irreversible) and is resistant to a lot of the antibiotics, so is complicated to treat. The other infections going on make treatment even more difficult. It's possible that the Lyme will be resistant to the medication and I will continue to progress downwardly. Although, I will NOT allow that to happen. I plan on defying all odds and turning this thing around. Knowledge is power, and so is finally trusting yourself. The sad thing is if caught earlier during all the years I was seeking help and had I received the proper care, this could have been treated with a couple bottles of Doxycycline. I start intramuscular antibiotics today in addition to the oral medications. Thank heaven for my nurse friend that will administer the shot for me, since it is one that can't be done alone. Another blessing. Thank you, Ivy.

Now everything feels so unsure. My body is in crisis mode. I am doing everything to keep my spirits high. But, I am angry at the injustice of all of this. At first it just seemed like ignorance, but digging a little deeper I see it's just plain criminal. I have only brushed the surface in this blog of an actuality that is almost unbelievable. Somebody somewhere put a dollar amount on my life. It seems my worth is in a bargain bin in a high price office building somewhere. I bet on my life if the people at the top there had a daughter falling into that bin, they wouldn't let her get tested at her local hospital.