Read Between The Lyme
#LivingwithLyme
Irony or Fate?
Hello out there! Here’s my story for today:
We now have a new insurance; it usually changes every 2-3 years. However, now I cannot have my labwork done at my doctor’s office. I can only use a certain lab that is not available there on location. So, I had to find a lab I could use in my area. Done. No big deal. I had my visit with my doc Thursday and headed to the lab on Friday after work.
I know the medical building where the lab is located because it is in the area, and I have been there before to see another doctor of mine. As I exited the elevator on the 3rd floor, I looked to my right first to see if the lab was on that side of the hallway. BAM! The name if the Infectious Disease doctor I saw before being correctly diagnosed with Lyme Disease, was glaring at me. I started to swell with anger. I wanted to march in there and punch him in the face. Really! I said out loud, “You have to be f***ing kidding me!”. Luckily, no one was in the hall to hear my sailor mouth. My mind started swirling with all kinds of thoughts from that visit I had with him over 19 months ago.
When I was was referred to him by my PCP, it was a last ditch effort on her part. She is my family doctor, and both of us had been trying to get to the bottom of my fatigue, sleep disturbances, nausea, back pain, etc. for the past 3 years, I was in her office about every 4-5 months with symptoms, the worst was the crushing fatigue and every time, I tested positive for an EBV infection. I had been tested for everything and probably twice such as Lupus, Rheumatoid Arthritis, Vitamin D, infection, Thyroid, you name it. For the joint pain and numbness in my feet, I had seen an orthopedic doctor and a neurologist and had had a spinal and brain MRI. Nothing. After about the 5th time testing positive for an EBV infection, I was referred to the OD doctor. What was causing the recurring EBV? All my blood tests for the past 3 years were sent to him as well as any of my medical record from my PCP. He had my whole life in his hands.
By the time I headed to his appointment in the early spring of 2013, I was a complete mess. I was so exhausted, I could barely make it through the day at work. I was in pain much of the time. I was having headaches of which I had never before in my life. I wasn’t sleeping well, I had severe neck and lower back pain, shoulder and hip pain, stiffness, indigestion, nausea, you name it! I also was worried. By this point, I had been ill off and on, with symptoms cycling and becoming worse for the past 3 years. I knew something was really wrong. My PCP had been talking about Fibromyalgia and Chronic Fatigue Syndrome but she wanted to rule out any other options and so I had my appointment with the ID doctor.
Now, I am no sissy pants. I take things as they come, and I am a problem solver. I have always had a crazy awesome work ethic, and I take pride in what I do. At many junctures in my life, I was working 2 jobs. I exercised, and I was social. But in the past year for sure, a lot of that had changed due to my health. I looked forward in a way to this doctor visit because it would assumingly help rule some things out and perhaps even help me find an answer. Let’s just say, I had a lot invested in this visit, and I had faith in my PCP’s referral to this ID doctor.
It was the worst doctor visit I have ever had in my life. Literally. The doctor came in and began asking about why I was there and my symptoms. I explained the EBV activations. He stated several times that EBV is not recurrent and that the odds of this happening were slim to none. Ok. I asked about the blood work showing the EBV infection. Oh, your doctor didn’t run the correct labwork. Everyone shows “exposed” to EBV as mono. Ok. As far as my exhaustion, I needed to relieve some of the stress in my life. Really? For my daily horrible headaches, which I never experienced before, Drink more Water. At this point, I am starting to get aggravated, as much as I can in the exhausted state I am in. For my neck pain? Well, well, you are a woman, so I am sure you carry your purse to one side. Maybe you need an MRI? No, doctor, I just had an MRI this past summer and nothing, NADA, showed up. Lower back pain? Hmm. Right hip pain? Go back to your ortho doc. This went on for about 30 minutes. For every symptom, he had an answer and a stupid one. By the end o the appointment, I was even more confused, angry and emotional than I had been walking in. At the very end, I asked about the soreness all over my body. He pushed on some pressure points and said, Yep, you probably have Fibromyalgia. I asked for a doctor referral. He told me he would not refer me and that I had to go back to my PCP for a referral. OMG!! WTH. Are you kidding me?!?
I cried all the way home. From sheer exhaustion, from getting no answers whatsoever, and from getting no help. I felt so hopeless. I was drowning in all of this unexplained pain and fatigue and there seemed to be no light at the end of the tunnel. Although I drove away angry at him for his condescending manner and his refusal to even so much as take blood, I didn’t realize how terrible he really was until I was actually diagnosed. Two months later, thanks to my researching online and finding a doctor whose specialty is FMS and Chronic Fatigue Syndrome, I tested full blown CDC positive for LYME DISEASE.
So, now, after being in treatment for 18 months and still plugging along, I walked off the elevator and I was taken back to my visit with HIM. I will have to have all of my lab work done there, 4-5 times a year, and I will have to pass his office. I am still trying to understand why this has come back into my path after all of this time; I wonder what I am supposed to make of it. Any suggestions or ideas? I know what I want to do, but it wouldn’t be productive nor healthy for me.
If you think of a productive way I can deal with this doctor, please let me know! I feel like my doing nothing just condones his ignorance and his unbecoming attitude. It feels wrong to do nothing, Like he did to me.
Peace, -B
Thanks for Spreading the LOVE!!!
10 Comments on “Irony or Fate?”
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Heya, just found your blog! I’ve had lots of appointments like the one above, all of which I’ve either broke down in tears right there and then or soon after leaving. It was totally awful. The only doctor I haven’t cried in front of is my new Lyme doc in California. I’m in the UK and I’ve had to go half way across the world to find a doctor who knows what to do with me!
About what you should do with this… could your lyme doc write a letter explaining your diagnosis, re-listing your symptoms and stress that you’re improving on treatment. Get sent to the ID doc, or for extra satisfaction, hand deliver it yourself. He’ll probably bin it, but if he’s still got an ounce of medical curiosity left something somewhere might register in his head and he might be a little nicer and more helpful to the next Lymie he sees unknowingly. Maybe!
Whatever you decide to do, good luck with it. I think I’d vomit if I ever saw some of the docs I saw at the start again.
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Hello, Louise! So you are traveling from the UK to a doctor here in the states? How is your treatment going? Well, I hope. You are right that the doctor may not be receptive, but it is worth a shot. I feel like I need to find closure with that situation, especially since it stirred up emotions I wasn’t even aware of when I passed his office last week. Thank you for reaching out to me, and thank you for reading! Please stay in touch!
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I have considered writing a letter to the doc that tried to help me until my hormones and thyroid scan showed normal. She actually was trying but just didn’t know what else to look for. I thought she would’ve been interested. His office staff may be more receptive. Maybe talk with the office manager and let her relay the message so you do not have to talk to the doc.
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Hi Katie! You know, that is a great idea. I really want to let go of this anger and move towards the idea of educating the doctor, if he is receptive. So, did you end up getting help for your health issues? I appreciate the suggestion, and thank you for reading my blog!
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Hey. Years into it, I saw an integrative doc that tested CD57 that came out low so he sent me to LLMD. Good luck settling it. You’re right about letting go of the anger. 8)
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Yep. My CD57 is still low. I’m about 18 months into treatment. I’m hoping it will be higher as of this past blood work. Just waiting on results. Are you still treating for Lyme? This is such a crazy disease.
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Not right now. I think we are at wait and see because can’t tell what is Lyme and what is hormones and/or Candida. I have never retested 57. It will be interesting to see what yours does.
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Hi Katie, yeah my CD57 is a 43 down from 53 a few months ago. But I started at 23 so…..hope all is well in your world!
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Thanks for the update! Better than 23…but…sorry
I feel like I’m treading water. Not bad but not what I want to be. Trying to figure the next step.
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You just exactly how I feel right now as well. Hanging on, but feeling like I haven’t made much progress in the past few months. Keep the faith!
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