Woo HOO! Here it is!!! I know you have been waiting all month long and then some, for my next installment… Somehow, it made it to my other blog, but not this one... so... here it is! I KNOW you want to read it.... Oh come on, humor me!
9/2/14 – Wow. Wow is a three letter word. Howver, right now I need a four letter word to describe how I am feeling. Well, no, actually. I need a 6 letter word, which is an adjective of the verb and adverb which is that four letter word I would have used, if I was just saying it. So yeah. That’s how I feel tonight, after my long day A) ON the phone, and B) waiting for the phone to ring. ONE good thing came of being ON the phone… the Tidewater Area Epidimiologist called me today. What a nice man. He does not understand why there are no Infectious Disease doctors that can treat my Lyme. OOPS! There it is.. the word/disease I do not have!!! How dare I say it. How DARE I think it!!! BECAUSE I CAN. So yeah. I was asked what HAD been done so far, and I explained about being treated with Doxycyline, but I had an allergic reaction to it, so now everyone I’ve seen is refusing to treat with anything else. He responded that there are numerous other antibiotics that I can be treated with, and I explained that – yes, I knew that, that I had been doing a lot of research over the past month, but apparently the doctors I’ve seen do not subscribe to the ILADS way of thinking and that there are only a very few antibiotics that they will use because “they are the ONLY ones that can effectively treat Lyme”, and since I’ve already had an allergic reaction to both penicillin and now doxycycline, well… His response was that they all need to start thinking outside the box… Yup. They DO, I said… but they will not. So. He is getting in touch with the District and State Epidemiologists, and the State Board of Health. He asked me who it was that I saw (I.D. Dr.) because he wants to A) discuss why they won’t treat me and B) find me someone who will. (NOT holding my breath on this one…. ) But he WAS a nice guy, who seemed interested, at the least.
I also called the I.D. Dr.’s (Dr. D) office, because when the receptionist called me last week with the names of the I.D. Doctors in Charlottesville, and Duke, I had asked her to cancel my appointment for the 3rd, and the receptionist didn’t let me – she said, “no, just keep it until we see where you are next week…”. So, I called and had to leave a message letting Dr. D know about my newest bulls-eye rashes, and the pain in my knee and fingers, that I had called the ID Doctors at UVA and they will not talk to me nor will they see me without a “referral”, and also to cancel tomorrows’ appointment, if she was still refusing to treat me. Her nurse, Kelly, called me back, FIRST. She wanted the phone number of the practice I had called at UVA (I find that rather odd, since SHE was the one who GAVE it to me in the first place… but, oh well, I gave it to her)and to find out what exactly had been going on with me since they last saw me. She (gatekeeper, as I so fondly call her to myself….) had received the message I left for Dr. D, but said she would see to it that the doctor also got the message. She would speak with her shortly, and then get back to me about the appointment. I let it “slip” that I felt very upset over this whole issue, and that I had called the Tidewater Board of Health, receiving the call back from Dr. P, who was not happy with this situation, AT all. I also let it slip that I was thinking, seriously, abot speaking with the news. And quite possibly, legal, as I feel like my symptoms and the illness is being completely ignored. The Gatekeeper said “OH NO, please don’t feel that way, we care very much what happens to you, and I”m sure the doctor will want to do something, with these latest symptoms, so I am going to keep the appointment for tomorrow on the books…” I said to her that I really didn’t think the doctor wanted to do anything more at this point, but she kept insisting I keep my appointment for tomorrow, she was sure that when she speaks with her that she will want to see me, and do something to help…. YeaH……
And now, for your reading pleasure, here is the outcome of THAT conversation (OH how I wish I had little emoticons to put in here… ) Dr. D. called me back a few hours later. She said she “really understood” how I was feeling, (RIIIIIGGGGHT….) but there was nothing she could do for me(Naturally….), even with this latest exacerbation of my symptoms/the new bulls-eye rashes… She feels that treating me “COULD“ cause just as many problems as the disease WILL… Hmmmm. Really. Should’a, Could’a, Would’a… The story of my life at this moment.
As I expected, She did not want to see me again, and asked if I called Duke …. to which I replied “Doctor, you realize Duke is over 6 hours away, right??? And, you realize I don’t drive…. Also, I couldn’t go there and back in ONE day, so the costs involved can be quite astronomical, all because nobody in the Tidewater area wants to treat me…” She responded, “oh yes, that is correct, Duke is pretty far…I’m sorry about that…so what about UVA?” (Never really answering my questions…) I told her what was going on with the doctors at UVA, and also said that again this is a hardship on me because WHY should I have to travel that far to see a doctor to treat this, when there are doctors right here in the Tidewater area, but they will not treat me, ONLY because of an allergic response that can be “fixed”…” And again, her only response was that she was “afraid” to treat me because of my allergies. WTF. W. T. F!!!!!!! Does ANYONE have ANY sense in the medical community in this area?????? REALLY. My Allergies. SO FIX THAT with De-sensitization, for heavens sake!!!!! Oy… So VERY Oy….
SO, there it is.. my newest addition to my Lyme Saga, Short but not so sweet…. in black and white… just Because I Can… I will keep you all "informed" when anything new happens… as I said… NOT holding my breath on the Epidemiologist being able to do anything … but one NEVER knows, does one..?!?!?!?!?
OH – I forgot to add: My PCP's office, which I spoke with on Thursday of last week, and left a message for my actual PCP Dr. P, has not called me back as of yet… Tomorrow will be a week… I didn't expect a call from them until yesterday… as that is when he is in the office… but no call… So I guess they figure I should just get sicker, also…. pretty sad.
