The Lyme Roller Coaster

It's been a few weeks since I've posted and I thought I would give an update. So much has happened in such as small time frame. First, my internal medicine physician who diagnosed me, has now diagnosed well over 30 patients IN ARKANSAS with Lyme Disease! His nurse tells me that there are times when they are diagnosing 3-5 new cases of Lyme Disease in ONE day! This is because my doctor has become well aware of symptoms of Lyme and is re-evaluating many of his patients. He now keeps an ample supply of IGenex lab kits in his office and has become proficient in making diagnosis based on clinical symptoms and supportive lab after ruling out other potential causes. He has now diagnosed two of his own staff members!

For me, I have had good days and bad days. The typical roller coaster of Lyme as I like to call it. On my good days, my arthritis pain is next to nothing, I have a lot of energy and feel like my old self. My bad days seemed to have changed. New symptoms have emerged......this past month, I have developed nausea (which I am sure is from the oral antibiotics),  terrible headaches, vision changes and horrible pain when I breath in. The pain fells like what I would think pneumonia would feel like and would be worse when I would breath in cold air. I complained of this last month and my doctor felt I had pleurisy. This is an inflammation of the lining of the lungs and would be another symptom of Lyme. In general, Lyme Disease causes a host of inflammatory responses in the body. Hence, arthritis and pleurisy as just 2 examples.  I guess a visit to the optometrist will be on my schedule. My arthritis still comes and goes and has taken a back seat to my headaches and nausea, but my overall energy level, although, improved from last month, is still not good. I have not felt like exercising but at least get about a 45 minute walk in most days. As far as my bike riding, I think I've been on my bike maybe twice. My bike group, the Mello Velo's are hitting the road hard and heavy beginning their spring time training to gear up for all the bike rides this summer. This has been really hard on me....to sit back and watch them go on about their fun times and I cant participate because I just do not have the stamina and am told that aerobic exercise is not really good because it can actually lower and knock down the immune system several days after. I'm sure if you have LD, you totally understand! If you don't have Lyme, then the best way I can describe it is that it's a feeling of total isolation. It can be extremely depressing but overall, I have managed to not let it get the best of me. I have resolved to stepping down from my bike team for a year or two in order to get my Lyme Disease treated and under control. I have every intention of getting back on my bike and riding with the group as if this had never happened to me and I look forward to that day!

IF YOU ARE ON DOXYCYCLINE, THE SUN IS NOT YOUR FRIEND!
I had a very fun day at the Jimmy Buffet concert here in Arkansas but despite my efforts to protect my skin from the sun, both my nose and my lips got blistered. It's not the usual kind of sunburn you would think of. It's more of a destructive searing of your skin. Not good! My nose still doesn't look good and I hope that I haven't permanently damaged the skin! So, if  you are taking Doxycycline or one of the sun sensitive antibiotics make sure you take this very seriously. I also had my share of margarita's at the concert. a Lyme NO NO! I have for the most part totally avoided alcohol but just couldn't resist. I had SO much fun that day! But, I did pay the price. I felt horrible for at least a week after but sometimes you just have to live life!

I had my routine one month Lyme follow up with my doctor last week. Okay, here's something very funny that I know all you Lymies will totally understand. When my doctor came into my room he had a lady intern who was working with him that day. When he introduced me he said "Tracy, this is doctor "x" and she is engaged to an Infectious Disease doctor!" He went on to say that she had been "inundated with Lyme patients today". She looked like a deer caught in the headlights and I just wondered how her dinner with her fiance was going to go that night! For those of you who do not have Lyme, the political issues behind Chronic Lyme Disease and the ability or lack of ability for those of us with it to receive medical care stems from the outdated and inappropriate IDSA (Infectious Disease Society of America) guidelines related to Lyme Disease. Infectious Disease physicians do not believe Chronic Lyme exists and feel that a short 2-4 week course of antibiotics is all anyone with Lyme Disease needs to cure them of the organism.

I would like to share a thought. I am sure that many of those who have LD have had this exact same thought at one time or another.

When I started on this long road of Lyme recovery, my symptoms were severe arthritis pain in all joints of both hands and feet, some fatigue and memory fog. Now, 5 months into the treatment, although my arthritis is 95% improved, I have so many more symptoms. Headache, pleurisy, fibromyalgia, nausea on top of the others. I have done a tremendous amount of research and believe I am doing the right thing. But, because the IDSA and the CDC does not recognized Chronic Lyme Disease, I can't help (on some days) to question if I am doing the right thing by taking these long term antibiotics! I am a nurse and have a full understanding about antibiotic resistance and what the impact of taking antibiotics long term can do to the body. It's the ol chicken before the egg question. Is my Lyme Disease causing all these symptoms or could the treatment be causing them? I would not be honest if I didnt share that I have had these thoughts. I think it's only normal. But, I can tell you in the end, I DO believe I am doing the right thing! I also have expanded my research into possible herbal therapies. This is getting WAY OUT THERE for a healthcare professional. But I can say, that, for me......I believe there will be a place for BOTH traditional medicine and herbal therapies in my treatment plan. At some point, I will come off of antibiotics and transition onto herbal therapy. I just haven't decided when that will be yet. I do value my physicians input but we are doing this together and in the end, I must feel good about my treatment. I purchased Dr. Stephen Buhner's book Healing Lyme. Dr. Buhner is to herbal medicine what Dr. Burrascono is to traditional medicine when it comes to treating Lyme Disease. I will talk more about herbal therapy later. But I highly recommend you consider this when making decisions regarding your therapy and Dr. Buhner's book is a good read!

Treatment Plan: My physician and I felt as though it was time to change my antibiotics. This is often done to keep the organism from becoming resistant. I will now be getting off of the Doxy and Cefdinir and will begin taking Azythromax, Cefin and Fagyl. Because I tested positive for Mycoplasma Pneumonia and because of my respiratory symptoms, the change to Azythromax was determined just in case the Mycoplasma organism was the cause. My chest xray was primarily negative showing some mild effusions. Azythromax would not only treat the cell wall deficit form of the Borrelia but also treat the Mycoplasma Pneumonia. Based on Dr. Burrascono's latest presentation at the 2011 International Lyme Conference, we decided that instead of taking the antibiotics 7 days a week that I would "pulse" the therapy.  I will take the Azythromax and Ceftin 3 days on and 4 days off and for the Flagyl, I will take it 2 weeks on and 2 weeks off because of it's long half life. This will help keep the organism confused and prevent it from changing forms and adapting to avoid the aggressors (the antibiotics) and also decrease the potential harmful side effects to my body. So far so good on all my labwork. Kidneys, liver function, CBC and thyroid all normal. My CD57, was 26 is now up to 48. This needs to be well over 120 before therapy can be stopped or a relapse will occur. CD57 is an indicator of how well your immune system is working and is very specific to the Borrelia organism. It is a measurement of  Killer T cells which are the cells of the immune system which fight off bacteria / infections in the body.

To close today's blog:
The Lyme organism, Borrelia Burgdorferi is often referred to as "The Great Immatator" because of its ability to adapt and change its form in order to survive in the body. It deeply penetrates organs and tissues instead of remaining in the bloodstream and it is believed by Lyme specialists that it is impossble to complete erradicate. It can be fatal. This is why I have chosen to use both antibiotics and herbal therapies for my treatment plan. There are some who have been able to completely control their LD with herbal therapies only and I do not dispute this. But for me, my approach will be integrative with both traditional medicine and herbal therapy. In the end, there is no written protocol, no one telling the physicians or patients how to do this and it really is and can be done a variety of ways. A person must choose the therapy that makes sense to them and that they feel good about. I wish all my Lymies healing, especially my dear friend's husband, Eric. My prayers are with us all!