I haven’t really slept for 5 nights. I am beyond exhausted. I am on all of this medicine, including Lunesta, but I am still waking up in the middle of the night and am unable to fall back to sleep. I went for a walk the other day and it wiped me out. I feel sick all over. I feel like I am losing my mind and that I will never get better. I try to nap and I can’t fall asleep. It is torture. I wake up one morning and my body keeps “revving,” in cycles. I have no idea now if the medicine I am on is making me sick or if it is the symptoms of what is going on. My back hurts horribly. I have read that 3 of the 4 medicines I am on have backaches as a side effect. So now I must decide if I can put up with the backaches or give up some of the medicine and risk the other symptoms coming back. I call Dr. A (my rheumy) and ask if he will please fill out my supplemental disability form for me. The receptionist tells me that they make it a policy not to do that. I ask to speak to the Dr. myself, but they say he will have to call me back. He does, but of course I miss the call and then can’t get him on the phone. I try this one more time. Then, I get a fax from his office. He has filled out the forms saying that I am capable of working. He has not even had a discussion with me since about a month ago, so is basing this on the fact that I had shown improvement since the beginning of the year. Clearly he has missed the part where I can’t remember things and how much it hurts to get out of bed still! I spend most of my time on-line researching everything I can find; Fibromyalgia, Lupus, MS, Celiac’s, Chronic Fatigue, Adrenal Fatigue, Hormones, Diabetes, Sjogren’s Syndrome, Lyme Disease. I am still not convinced it’s not lyme.
Heather sends me a chart so I can fill out all of the symptoms I have and cross reference them with lupus, fibromyalgia and lyme. With all of the research I am doing, we realize that b/c lyme disease can be a controversial diagnosis in terms of treatment length, perhaps we should just see what symptoms I have first. And forget about what the NAME of it is. If I have all of the lyme symptoms, and they are best treated with antibiotics, that is the first course of action I should be taking. And if the antibiotics don’t work, then I can reassess the managed pain route. Plus, there is no blood test for fibro and they are willing to give me a “clinical diagnosis” for that (meaning I will possibly be taking medicine forever!) so why not give me a clinical diagnosis for lyme? When I fill out the chart I have an alarmingly high number of symptoms that cross reference with lyme.
My friend, R., calls me from LA and tells me his father here in Philly has been diagnosed with lyme disease, including the facial paralysis, and that maybe I need to reconsider a lyme diagnosis. I go back to the internet, and my sister buys me Coping with Lyme Disease, an amazing and informative book by Denise Lang http://www.amazon.com/Coping-Lyme-Disease-Second-Practical/dp/0805047751. She reads the whole thing and then gives it to me. I underline ½ the book and again, I can’t believe the number of symptoms I am checking off. It is an eye opener and I get frustrated and angry that this could have been the answer all along. One chapter in particular, about Women and Lyme, shows me that it is common for women to experience increased symptom flares around their period. Screw all of these doctors who made me feel like I was crazy when I explained that keeps happening to me! I make an appt with a Dr. who is in a “tick area” in MD. Now doctor number 9 I think! He sees a lot of lyme. While he is attentive I find that I know more about co-infections than he does, and he seems confused by the differences b/t erhlichiosis and babesiosis. Not a good sign. I will not go back to him.
I join the Pennsylvania Lyme Yahoo Group, (each state has one) and ask for a recommendation to an LLMD (lyme literate md) in my area. Someone who I am forever grateful to sends me the name of a doctor near me. I will henceforth refer to him as Dr. S, (as in Saviour!). This is now doc #10. My first meeting with him I know I am in the right place b/c his receptionist is incredibly kind to me. My sister, Tammy, is with me. He spends almost 1½ hours with us. I don’t feel rushed or dismissed in any way. He does not make me feel like I am crazy for the ridiculous amount of symptoms I have. He verifies that yes, my tests could be negative and I could still have lyme. He decides to do full lyme tests as well as check my ANA again, amongst other tests. We decide against Igenex or MDL (known for more sensitive testing criteria) for now, and will see what the Quest tests say first. I am covered by my insurance for Quest, although my THREE other lyme tests went through Quest and were negative. But I trust this guy and am willing to go down this road with him. He answers every question I have from all of the research I have done, and is very knowledgeable about co-infections. I feel like for the first time in months I have been heard, and that I am not insane. I cry in his office out of relief this time, which makes him uncomfortable, which I think is kind of funny. I go back to see him the following week and my lyme test is still negative. He feels he can give me a clinical diagnosis based on his experience and my range of symptoms. I am given 200mg of doxycycline for 30 days. Although from my research I know this is a low dose, we decide we will start with this and see if we need to be more aggressive. He does not want to put me on a picc (peripherally inserted central catheter) line yet. Some chronic cases require iv antibiotics for long periods of time. I am learning through my research that treatment length/dosages are a hotly debated topic. Also, I read about the Jarisch-Herxheimer response. The Wikipedia definition of this is…when large quantities of toxins released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification. So, I will most likely experience a severe flare of symptoms while the bacteria are killed off. Let the games begin.
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