On the Antibiotic Wagon

I hope everyone is staying cool. Temperatures here have been raging at around 105 degrees and that is the REAL temperature, not the heat index which is even higher. For the love of God, it is hot. Between noon and about 7 p.m., it is way too hot for me to go outside. The heat just completely zaps me.

I had my doctor visit a few weeks ago. Things seem to be pretty status quo in that my numbers are all hovering basically at the same place as in June. Here’s where I stand right now: CD57 – 33, Lyme bands 23 and 41 showing IGG and band 41 IGM, EBV is reactivated; it had been inactive since April, Mycoplasma finally under control, and HHV6 active again. In all honesty, this is for the most part where I was at the beginning of last summer. What I expected was my doc would put me on another course of antibiotics since I have been on amoxicillin for about 5 months now. Instead, on the patient lab VM, she said we were going to take a break from the antibiotics.

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It freaked me out. I listened to the VM about 3 times. My brain is like, Are you Sure?!? But there are no certainties with Lyme now, are there. I was so sick when I was finally diagnosed and I have not had more than a day or two break from being on antibiotics in 27 months. In in those 27 months, I have made some significant strides. So, yes, it is freaking me out a bit! I know I need a break, my body needs a break, but I feel like I have lost my walking stick. It’s only been 3 days without meds, and I keep analyzing myself, waiting for new symptoms or for the flu-like monster to rear its ugly head. It’s hard not to worry.

Also, right now is about the most stressful time for me at my job, besides at the end of the school year. In a mere 10 days, school is up and running and so am I. I’m struggling between being happy to return to the classroom after a nice summer break and the dread of becoming severely ill. While I know it is not a good thing to worry and stress, it’s there in the back of my mind, the What If? Meditation, and I use that term very lightly as I am just dipping my toe into that arena, is helping some. The breathing combined with focusing has helped me clear my mind some. Like one of the mantras in AA, I’m taking it One Day at a Time. Or one hour at a time. It’s just a challenge for sure.

Anyway, I’m on the wagon, and we’ll see how it goes. My next doctor visit is early October. By then, the weather will still be hot, but the evenings and mornings will be cool, school will be in full swing and hopefully, my immune system will have stepped up and kicked some butt.

For those of you not on antibiotics, or taking a break from them, any suggestions on how I can support my immune system right now? I appreciate any and all recommendations.

Till next time, friends, -B

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

Medication anyone?

I will begin my 14th year of teaching this fall. Very cool. So, I am on summer break! Whoo hoo! And while, yes, teachers do work during break, it is still nice to have more freedom in my schedule. My Lyme treatment is still going strong, so having time to rest as needed is great. I have been on antibiotics since March 2013. My doctor changes my meds about every 2 months. Lyme bacteria, Borrelia burgdorferi, is one of the most complex and intelligent of the bacteria world. It can hide in the body when it is attacked by the immune system and or antibiotics. It can adapt to the antibiotics as well. Thus, the changing of the meds often. I should be starting a new round of antibiotics here soon. With the fatigue letting up a bit as well as the nausea, a few weeks ago my doctor was hopeful that I could maybe take a break from the antibiotics and allow my immune system to step up and do some work, but alas, no go. After bloodwork revealed that my CD57 cell count is still extremely low, I have to continue on meds. Lazy immune system! LOL  

And while there is much controversy in how Lyme disease should be treated, etc., I don’t really care about the critics. I found my LLMD on MY OWN. I went to her out of desperation and because I was finally diagnosed with Chronic Fatigue Syndrome after seeing at least 5 different doctors and specialty doctors no less. I chose her because she has an awesome reputation with CFS patients. The first thing she did, based on my symptoms, is test me for Lyme disease. No other doctor, including an Infectious Disease doctor, had even mentioned Lyme disease, and I tested full blown CDC positive after almost 4 years of trying to get an answer to my illnesses. So, yeah, I don’t care about the naysayers. They don’t carry much credit with me at all. Only the person who has basically saved me from worse is my hero! I will do whatever she tells me to as far as treatment goes.

Hope all is well in your world, hobbits! -B