The Beauty of a Moment

imageNow that my body has gotten a break from the IV antibiotics and I am feeling a bit better, I have been enjoying being able to look outward at the beauty all around me. This weekend I was fortunate enough to go to my friend’s house in Allentown, PA. He has an exquisite piece of property with absolutely no houses behind him but rather fields, trees and sky for as far as you can see.

I stood out on his deck and marveled at all the magnificent Autumn colors around me–green, yellow, brown, orange, red. I never noticed these colors the last few years because, quite frankly, I was too sick to care. It was such a special moment being able to stand out there being fully there to marvel at the beauty surrounding me.

Tomorrow I start an intense regimen of antibiotics so the moment I had at my friend’s looking upward and outward without any pain, fuzziness or fatigue may not last. But I am thankful nonetheless–even if it is just for a moment.

Transitioning to Oral Antibiotics

Out at Longwood Gardens with a friend celebrating the removal of my PICC line

Out at Longwood Gardens with a friend celebrating the removal of my PICC line

I never thought it would get here but I made it through 9 months of intense IV antibiotics. This is a cause for celebration! Thank you to those of you who have helped me get there through your prayers, financial or physical support.

Now that I have finished the IV protocol, I am being transitioned to the next phase of my treatment, which is a pretty potent oral antibiotic regimen. My doctor says that he has gotten enough of the infection out so that I can be transitioned to the oral-only protocol but that the infection is not to the point where treatment can be stopped. He says I will be taking these for another year to year-and-a-half. He explained that we need to keep whittling away at the bacteria that go into hiding so that they can never build up enough to cause me problems in the future. I only take the antibiotics on the days that the bacteria are actively replicating. Thus, I get 18 days off a month. I will do this for 3 months at a time and then go back to see him after each cycle so he can keep a watch on me.

Some of the many antibiotics and supplements I am taking this month

Some of the many antibiotics and supplements I am taking this month

I have started my new regimen and notice that I feel fairly good during the time that I am not taking the antibiotics but feel fatigued, achy and cloudy on the days that I do take them. Although this is a nuisance, I am grateful for how far I have come as well as for the fact that the antibiotics are helping to clear out the infection.

The overwhelming fatigue where I pretty much spent the whole day in bed in my pajamas is no more. To think that there was a time when taking a shower or styling my hair felt insurmountable seems surreal.

Goodbye IV supplies..I sure it's forever!

Goodbye IV supplies..I sure hope it’s forever!

In addition, I remember when I had difficulty going down the stairs because, due to my balance issues, I was afraid I was going to fall forward or at the very least tilt to the back or the side. Now I wake up in the morning and do not have to be focused on this.

I go to bed in the evening and do not worry about whether I am going to sleep through the night. If I do wake up, I do not wake up with the same terrible anxiety or night sweats that I used to get. They happen occasionally but they are nowhere near the intensity.

No more showers with a cast protector covering up my hand and arm!

No more showers with a cast protector covering up my hand and arm!

I also used to have problems with swallowing. I knew I needed to swallow but I could not get my brain to make the connection to the nerves and muscles. Now I drink and eat without thinking about it.

Entering this world of chronic illness and suffering has caused me to get connected with two different Lyme disease organizations—one at the state level and one at the national level. Both host medical conferences for healthcare practitioners. Being involved in this way has given me the opportunity to use my nursing knowledge to enable nursing attendees to receive continuing education credits after the completion of the conferences and to learn the latest information out there.

Sending off my extra saline flushes so that someone else can be helped

Sending off my extra saline flushes so that someone else can benefit from them

Going through this difficult health journey and volunteering in this way has allowed my story to be published in local newspapers and a magazine and to be interviewed for a blog talk radio station.

I share this so that you know that this disease does change you but the fruit of that suffering is the ability to stop, look and listen to others’ suffering in a way you would never have been able to do before. There’s nothing like being comforted by someone who’s been there and knows just how hard it is.

My unused IV tubing gets packed up so someone else can benefit from it

My unused IV tubing gets packed up so someone else can benefit from it

Then it causes you to look outward and find the role that best allows you to be part of the fight for better screening, treatment and insurance coverage. You might notice that you will start getting involved with a local Lyme support group or volunteer for a state-level Lyme Association. The more you get educated, the more you will be able to help yourself and be an advocate for others.

God does not waste pain. Hang in there. It’s taken me a LONG time to get to this point. I am not well yet, and I do trust that I will continue to improve past the point that I am at now. But it is nice to be turning the corner. Like I said, it’s been a long time…

My Lyme Story: Month Nine

Dr. Jemsek and I at my 9 month appointment

All smiles with Dr. Jemsek at my 9th month appointment

It’s been a while since I’ve posted an update on my progress but I am excited to share some good news: my PICC line is out! Last Thursday, after completing my ninth month of IV antibiotic treatment I visited Dr. Jemsek. After examining me, he announced his confident diagnosis that the infection had been subdued enough to warrant the removal of the PICC line and the transition to oral antibiotics. Needless to say, I was ecstatic to hear those words!

The removal of the PICC line

The removal of the PICC line.

Even better, he told me the nurse could do it right there in the office. Initially I was terrified it would hurt but was relieved when the process turned out to be painless, although I could feel the line coming out. And the anticipation of washing my hair and taking a shower without a bulky cast protector was incredibly encouraging. Ah, life’s simple pleasures!

Best of all, a new phase of my journey would be unfolding.

Still, Dr. Jemsek was quick to remind me the oral antibiotics are required for another year to year-and-a-half because even though the infection has been severely weakened, it still needs treatment.
While I clearly see improvement, it is evident I am not yet out of the woods. I still experience some of my symptoms but not at the same intensity.
I wish I could tell you this journey is easy and quick, but unfortunately it is not. Anyone who endures can take heart that they’ve been blessed with incredible strength. Keep the faith and keep on fighting!

My Lyme Story: Filling the Pill Boxes

Can you Fit Anymore Pills in those Pill Boxes?

This picture of me with my pills, pill boxes and organizational sheet shows a typical weekday in the life of a treating Lyme patient. It takes me anywhere from one hour to two hours to fill up these pill boxes. I have it down to a science as you can tell. It makes it easier that way.

This picture of me with my pills, pill boxes and organizational sheet shows a typical weekday in the life of a treating Lyme patient. It takes me anywhere from one hour to two hours to fill up these pill boxes. I have it down to a science as you can tell. It makes it easier that way.

I am on approximately 22 different supplements to keep my immune system boosted during my treatment. Most of these I take twice a day and I take more than one each time. So that makes for a total of about 80 supplements a month I need to take so my kidney, liver, WBC, RBC and cortisol levels do not take a beating and can eventually take over in keeping my infection in check.

In addition, I am on anywhere from one to 4 different antibiotics and anti-malarials–all taken twice a day with more than one taken at a time. These total about 24 to 60 pills per month.

Thus, as you can see, treating for disseminated Lyme disease is both time-consuming and complicated, and burn out is common. For me, personally, I find it mentally exhausting, and oftentimes I fight to keep myself awake so I can finish filling my pill boxes in one sitting. Sometimes it gets the best of me, and I have to take a nap before finishing.

Energy is something I used to take for granted but not anymore. There’s so much I no longer take for granted.

My Lyme Story: Treatment Plan

Cycle 7 protocol

Cycle 7 protocol

Dr. Jemsek’s goal of restoring a Lyme patient to health relies on a two-pronged approach:

1. Hit the body hard with antibiotics to kill the infections; and

2. Supplement with herbals and vitamins to help boost the immune system.

Dr. Jemsek informed me there are many people walking around with Lyme disease. They are unaffected by symptoms because their immune system keeps it in check. The medical community doesn’t know why some are able to overpower the Lyme while others succumb to it.  Sometimes when a person takes a fall, or suffers through a car accident or a prolonged period of stress, the immune system is too weak to keep it at bay; therefore, the disease destroys the person’s overall health and quality of life. Dr. Jemsek has advised that once the Lyme is under control, we must continue to restore the immune system to the healthiest state possible to enable it to take over.

Because he doses the antibiotics every other day, Dr. Jemsek’s treatment approach is a little different from other local doctors. His rationale? Given that Lyme replicates slowly, you do not need to take them every day. This regimen also allows your body time to recuperate. The down side? Since Lyme replicates slowly it can only be killed during its active phase, which necessitates a long treatment duration.

On top of that, I have multiple co-infections that demand treatment—each with different medications. It will take eight months of IVs to attack the Lyme bacteria and the various co-infections. The doctor will change the antibiotic each month: one month the antibiotic might target the outer cell wall of Lyme; another month, the inner cell wall. On yet another given month it might attack the L form, followed by the spirochete form in the succeeding month. Concurrently, Dr. Jemsek will alternately hit the co-infections—Babesia one month, Bartonella another month — and so on and so on.

Upon completion of this protocol, I will be taken off the IV antibiotics and put back on oral antibiotics only until I’m slowly weaned off. This whole time I will stay on the supplements to keep my immune system functioning properly. As I go back on the oral antibiotics, I’ll be taking more supplements than medicines until my immune system fully assumes command of the situation.

It is imperative to start as soon as possible because this disease is unrelenting. It infiltrates the nervous system, seeking to destroy it. Although people can and do die from Lyme, the bacteria survive even after they die. Autopsies of the brains of Alzheimer’s, MS and Parkinson’s patients have been shown to have active Lyme infections. Like I said, Lyme disease isunrelenting.

On October 29, 2013, Betsy Miller and I drove down to Washington, D.C. to have my PICC line inserted. I went to George Washington Hospital where they inserted the line into my forearm. They took x-rays to ensure proper placement — not too close or not too far from the heart. The next day we visited Dr. Jemsek’s office where they did a test-run the first antibiotic. From there, we transported the bags home and Betsy started my treatment. After a month, I returned so they could conduct a test-run for the next antibiotic. And on and on it continues.

Even with all of the knowledge I’ve gleaned from medical research, there is so much more to learn about Lyme disease. My most fervent hope is to come out on the other side and become an advocate for Lyme patients. But I will have to wait and see how God works. Your prayers and support mean everything to me. They have enabled me to get this far. Please continue to pray for me as I start this next step of my journey. It is an upward battle but one that can be won through faith, hope and courage. Here’s hoping I make it to the other side!

My Lyme Story: Diagnosis

P1010120I was diagnosed with Lyme and multiple tick-borne infections in the Fall of 2010 after a long and circuitous journey. I’d spent seven years trying to get to the bottom of my symptoms and finding a doctor who could help me.

I’m still in the thick of treatment; in fact, I’m just about to embark on an eight-month journey of IV antibiotics — not an easy feat. However, my doctor has advised me that this is the only way to get the Lyme out of my central nervous system (CNS). I admit, I am fearful at times. However, with the encouragement of my God, doctor, family and friends, I remain hopeful I will beat this disease once and for all. My fondest hope is that this blog will help others feel more hopeful and secure as they wade through the oftentimes confusing and political world of Lyme disease!

Some people may already be aware of Lyme Disease. What they most likely do not know is that a tick is almost always infected with more than just Lyme; it is often infected with accompanying co-infections. Worse, it inhabits pretty much every part of your body. Thus, Lyme literate physicians (LLMDs) call this disease Multi-Systemic Tick-borne Disease (MSTD), rather than Lyme.

As I mentioned, the Lyme bugs can carry many co-infection organisms such as Babesia, Bartonella, Erlichiosis, Rocky Mountain Spotted Fever and others. They pick them up in their infancy stage when they bite into their first prey — a mouse or other small rodent, bird, or animal. Thus when treating, it is crucial to have a skilled physician who not only knows how to treat Lyme but also knows how to find and treat all the accompanying co-infections. As Dr. Horowitz, a well-known Lyme specialist, puts it, “If you go to a doctor with five nails in your foot, and the doctor pulls out two nails, and you still have foot pain, it doesn’t mean the treatment was ineffective; it means you didn’t pull out all the nails.“

I am not sure when I first contracted Lyme. What I do know is that I was bitten many times as a kid and adolescent because my family camped several times a year. It was pretty standard that we would pull several ticks out of our heads and legs. From the time I was a young child, I struggled with a monthly recurring flu that even landed me in the hospital a few times. Still, I was mostly fine until August 1994 when, at the age of 27, I suffered a terrible flu characterized by fainting spells, dizziness, and shortness of breath. Having a nurse’s mentality, I tried to ignore it. But I as I quickly grew sicker and sicker,  tuning out these debilitating symptoms became impossible.

Karen Franks at Avon Lea FarmsI went to the ER before ending up in cardiac ICU for about ten days, where my heart was beating at 200 beats per minute (BPMs). I was weak and faint, and every time I moved, my heart rate would elevate again.  The doctors could not figure out what was wrong with me. They eventually decided I had contracted a virus that attacked my heart and subsequently prescribed heart medication. After a month they tried to wean me off, but the rapid hear beats immediately returned. This pattern repeated until finally after about a year, I was able to stop the medication without any re-occurrence or damage to my heart.  While it was incredibly frightening, God protected me. Once over, I didn’t give the experience a second thought.

At the time I didn’t know that Lyme typically starts as a flu, and if not treated soon enough, travels either to the heart, the brain, or the soft tissue. Was it possible I’d contracted Lyme but the doctors didn’t know enough about it to investigate? I cannot say for certain since I was never tested.

While my symptoms disappeared after that harrowing year, Idid experience cyclical flu symptoms. Again, remaining true to my nature I just kept moving forward. I refused to let those sick periods impact my lifestyle. I worked long hours at jobs I loved and spent my free time leading international mission projects, hosting bible studies, traveling, volunteering at church and other organizations, or hanging out with family and friends. They were very good years.

Then on April 10, 2003, while working as a pharmaceutical rep, I fell while visiting one of my neurologists at Riddle Hospital.  I tried to get back up to work but my head was spinning and my vision was impaired. At the ER, I was told I had sustained a concussion.  At the recommendation of another neurologist-client, I went home to rest with little stimulation. Watching TV, using my laptop, or going on the internet were strictly off-limits.  Due to the post-concussive fatigue, visual problems, and vertigo I was having, it was hard for me to leave my house. I did a lot of gardening during this time because I needed to feel productive. I was not used to having so much time on my hands and, quite frankly, I hated it. Now I sometimes wonder if I could have gotten bitten or re-bitten as a result of my actions. I just really won’t ever know.

Cycle 7 protocol

Cycle 7 protocol

The difficulty with Lyme is that when the ticks are in the nymph stage, they are the size of a poppy-seed and can be mistaken for dirt. You would think that when the tick lands on you and embeds its fangs into your skin, you would feel it. But being very smart critters, they anesthetize the area with a numbing agent so you don’t feel a thing. In addition, they emit a type of blood thinner to easily draw your blood into their body. As they do this, they also emit saliva which contains the Lyme and other infections.

Did I experience a re-occurrence from an earlier bite that was never treated or was it actually my immune system that failed as a result of a fall, allowing the existent Lyme to overrun my body? Again, I just don’t know. Sadly this is the case for most chronic Lyme sufferers, hence the reason their affliction becomes chronic. (Chronic means either the infection is not detected during the acute time period, or the symptoms persist beyond this acute stage. This gives the Lyme infection more time to replicate and spread. As a result, it takes longer to treat and becomes more complicated to eradicate.)

Still feeling ill, I went along with my neurologist’s treatment but instead of improving as expected, I got weaker, felt more exhausted and developed new symptoms. My fatigue became acute and unbearable — to the point that just getting out of bed in the morning was a huge accomplishment! I also experienced chills and shivers, especially in the middle of the night and in the morning. The only way I could ease them was to immerse myself in a hot tub. Immediately following, I would head straight back bed because I kept thinking if I just lie down for five more minutes, I’ll feel a little better. Having to get up to make something to eat was exhausting so I went without food for many days. Unsurprisingly, my weight plummeted to 85 pounds. I sought out several different brain specialists for answers, all of whom wanted to put me on stimulants. Since I was hyper-sensitive to medicine, I had strong reactions.

Having now spent six years with traditional doctors who were unable to help me, I researched on the internet and found a fatigue specialist in the fall of 2009.  After almost a year of trying a few unsuccessful protocols, the specialist asked if I had ever been tested for Lyme disease. Since this was the first time a doctor had suggested it, I agreed to the test. On August 17, 2010, the doctor drew my blood and sent it to off to the lab. Although I’d

There's Always something to smileout ab

There’s always something to smile about.

willingly agreed to the test, I was certain I did not have Lyme disease. You see, in my limited knowledge of Lyme, I was convinced that one had to exhibit the “typical” symptoms of a red bull’s eye rash and severe joint pain. It took a month to get the results but — surprise! — the test came back positive. From there, a few more months passed before the doctors decided on a course of treatment.  Finally in January 2011, they prescribed the antibiotic Ceftin.  I agreed, though still unsure of my opinions about Lyme disease.

Thus began my journey of researching and reading everything I could find on the subject. This is also when I discovered that joint pain is only found in some patients.  In addition, only 40-50% of Lyme patients find a migrans rash and, most of the time, the rash is only there in the initial stage when it begins to reproduce and move within the skin. Next, Lyme disseminates from the skin into the blood, lymphatic system, brain, heart, or joints. This is why Lyme symptoms are so diverse. It’s also why Lyme symptoms can change from week- to- week or month- to- month. No wonder it’s so difficult for doctors to test for, let alone diagnose!

While Lyme is still in the skin, antibodies are not going to show up. Even when it has moved into the tissues, heart, and brain, antibodies will still not show up. That’s why there is only a small window of time for the test to register positive. In addition, when Lyme has been in the body a while it tricks the immune system to stop fighting it.  No antibodies are produced, and since the Western Blot is an antibody test, the test comes back negative. Patients get sicker but their tests are negative. Welcome to the confusing world of Lyme disease!

After about a week on the antibiotic my symptoms began increasing while my health continued to deteriorate. Some time later, I discovered that this was due to a herxheimer reaction, which in layman’s terms means there were too many dead Lyme toxins in my body. Given that I’d probably had it for a while, there were a heck of a lot of angry Lyme bacteria being stirred up, fighting against treatment. This doctor was unaware that in addition to killing the Lyme, one also needs to supplement with de-toxifiers to pull it out of the body.  I stopped and took a break through the summer, but inside I felt awful.

I was so lethargic that simply getting off the sofa was an ordeal. My head felt like it was swelling and throbbing 24/7. I kept saying, “It feels like I have an infection in my brain.” It was hard for me to have clothes against my skin due to strange sensations.  The bottoms of my feet were painful, with unsettling tingling sensations. My neck felt stiff. My shoulders ached. My ears were ringing. My body would feel frigid, and I would shiver inside for no reason. I would also wake up in the middle of the night drenched and unable to fall back asleep. My days typically started at 3 a.m. because my body would not fall back asleep once I was awakened by the shivering.

lyme_disease_hidden_epidemic_poster-p228833588305763989t5wm_4001In August of 2011, my dear friend, mentor, and fellow church member Dianne Balch observed my noticeable weight loss and grew concerned about the state of my health. She and her husband asked me to move in with them so they could take me to some doctors who could hopefully get to the bottom of things. Just when I thought my fatigue could not possibly get any worse, it became even more difficult to get up out of bed and take a shower. When I did manage to shower, I had to rest on the ledge (thank goodness there was one!). As soon as I finished, I’d have to lie right down on the bed. Since the thought of blow-drying my hair was overwhelming, I opted for a basic ponytail most days. My balance became a major problem because my head felt like a heavy bowling ball. Whenever I moved it, my balance would be adversely affected. Every so often I noticed I could not swallow. This was not due to a problem in my throat, but rather because my brain was not making the connection.

That fall Dianne and I went to see a few different Lyme literate neurologists. A few of these doctors did other tests and confirmed that Lyme was contributing to my symptoms. That November, I started treatment with a local Lyme specialist. I had to get a PICC line because his main treatment protocol was IV Rocephin. Alas, I got sicker, not better. As I learned more about Lyme, I realized he did not have knowledge on treating co-infections or detoxing the body. Thus, he did not know how to “pull out all the nails.” After a few months of treatment, I wound up in the hospital.

On January 10, 2012, I went to another local Lyme specialist who was known for treating both Lyme and its co-infections. What I hadn’t realized prior to the appointment is that this doctor had recently switched to an herbal protocol, believing in a more natural, holistic approach. After a year on the herbal treatment without much change, I decided it was time to get a second opinion from a national expert.

Karen Smiling2I chose Dr. Joseph Jemsek, my current Lyme doctor, because he is the top infectious disease doctor for Lyme, and one of the few who is trained by the International Lyme and Associated Disease Society (ILADS).  He is known for restoring the sickest and most complicated patients back to health. His office is in Washington, D.C., and people fly in from all over to see him. I had spent so much money and time with local doctors (too many to list), that it was time consult with someone whose life was devoted to getting Lyme patients well.

Unfortunately, there is much conflict over the treatment of Lyme. Guidelines put into place by the Centers for Disease Control (CDC) state that eradicating Lyme requires no more than two weeks to a month. Any symptoms after that are considered post-Lyme syndrome and do not need to be treated.

ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. It believes that treatment must be more open-ended in that the patient is treated until they are well or until symptoms subside.  The goal of ILADS is to provide informational exchange among physicians who treat Lyme and other tick-borne diseases, and to advocate for physicians engaged in such treatment.

The CDC method works well for most that get on treatment right away but does not work for those who aren’t as fortunate to know they were recently bitten.  In spite of ILADS’ ongoing efforts, any well-known Lyme doctor who treats longer for this disease is often scrutinized by insurance companies and can wind up in court to defend his treatment protocol. As a result, many ILADS-oriented doctors in this field leave, or, if they are courageous enough to stay, find themselves with huge legal and medical malpractice bills. In addition, the length of a visit is much longer since their patients are so complicated.

In return, the high cost of treatment for chronic Lyme disease falls on the lap of the patient rather than their insurance company. To make matters worse, there is very little funding for Lyme disease research. Unfortunately, most of these patients are too sick to work yet cannot qualify for disability because they do not have enough work credits. In addition, the parameters for being considered for Lyme disease are extremely stringent. Since many of these patients do not look sick, they are labeled as hypochondriacs and thus left isolated and hopeless. This must change. Lyme patients deserve the opportunity to get well regardless of their financial situation.

My first appointment with Dr. Jemsek took place on March 14, 2013. He and his Physician Assistant read over my lab work, along with the reports about my concussion and Lyme disease protocol. Dr. Jemsek said, “I am sorry you have been through the ringer here. I believe Lyme disease is contributing to your symptoms, and I want to help you get well. I believe you can have improvement with treatment but I do not believe herbals are strong enough to do it. They cause inflammation when they disturb the bacteria. Your symptoms worsen but they are not strong enough to eradicate it.”  I have known patients who have gotten well from herbals so I know it is possible.  But in Dr. Jemsek’s mind, this disease requires a multi-faceted approach with both antibiotics and herbals. I believe him, and am grateful to have a doctor with such expertise.

On May 6 I returned to Dr. Jemsek’s office for my follow-up appointment, where we discussed the best approach for me. Read about my treatment plan here.