Day 29 of National Lyme Disease Awareness Month

National Lyme Disease Expert Dr. Richard Horowitz Sits Down with Senior Managing Editor Dr. Manny Alvarez of Health Talk

Horowitz-Dr-Manny-300x165 May. 06, 2015 – With 300,000 new cases of Lyme disease in the U.S. each year, it’s no surprise that the tick-borne illness has been a hotly debated topic among medical experts. Dr. Manny interviews Dr. Richard Horowitz, New York Times bestselling author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease.” Click here to watch “The Lyme Disease Debate.”

 

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…

Month Five…Can it Be?

Receiving my Month 5 Protocol

 
Betsy and I drove down to Washington, DC, on Tuesday, April 1, to see Dr. Jemsek for my 5 month appointment. He told us that he was happy with my improvement thus far, and that I would now be entering the hardest two months of my protocol.

Dr. Jemsek writing out my plan

Dr. Jemsek writing out my plan

“Thus far, we’ve cleared out the periphery but now we have the biofilm to blast, which is the deepest layer. The disease likes to infect the bottom of the brain, and we need to get it out of there with some heavy hitters. We will be using IV Merrem as well as a new one called IV Tygacil to reach those layers.”
The nurse mixing up Tygacil

The nurse mixing up my Tygacil test dose

Tygacil can make a patient nauseous so he said that I should keep ginger, Zofran or phenergen on hand.
 
After they ran the Tygacil in the office, I went straight back to the hotel and fell asleep for four hours. I woke up for some dinner and slept another 12 hours but I never got sick. This was my prayer, and I was grateful to God for His protection.
 
Month 5 will require treatment for 3 weeks in a row with a one week break at the end. The first week I will be dosing with the Merrem and Tygacil on Monday, Wednesday and Friday. I will also be taking an oral antibiotic, antimalarial and anti-fungal Monday through Friday. In addition, I will be mixing xylitol with water and taking 2 tsp a day for 8 days along with a pill called Lactoferrin. This makes a sugar alcohol mix that acts as a detergent scrubbing open the biofilm that the bacteria hide in.
 
On the second week, I will be running IV Merrem and Cipro twice a day Sunday through Thursday. Cipro makes me queasy, and I’ve never taken it 5 days in a row so I pray for the best. The next week I will take the anti-malarial Coartem, which gave me intense nightmares and made me feel depressed the last time I took it. But I’m thankful it will only be for 3 days.
 
brain-answersThis month’s protocol will be pulling the bacteria out of the brain in the most powerful way yet. Thus, the side effects could be harsh, both physically and mentally. As always, I will need to think with my head remembering that God is there with me even when my emotions try to tell me otherwise. I’ve been very blessed with a core support network and a good God so I know I will get through it yet again. There is a lot to be hopeful about!

Halfway Mark

A shot right after finishing treatment

A shot right after finishing treatment


As of last night, I finished my last IV antibiotic for the month of March. This means I am at the halfway mark for the IV antibiotic phase of my treatment…4 months down and 4 more to go! Thank you, Jesus!!

Although I still have to take an anti-malarial for the next four days, I will actually be off IV antibiotics until April 1 when I will go back down and get tested for my next round. Please pray for safe travels down and that I will tolerate the test dose.

The Month 5 antibiotic can cause some pretty potent side effects. So please pray that once I begin Month 5 treatment on April 7, I will be focused on the end result and not live in the day-to-day effects that it might give me. I need God’s strength to get through the hardest phase of my treatment protocol.

Thank you,
Karen

Holding on to hope!!
 
 
“Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

Third and Fourth Month Visits to Dr. Jemsek’s

P1020692

I’m sure by this time, if you live in the Northeast, you’re wishing you’d never see snow again. For me, it seems every time I have an appointment with Dr. Jemsek, we have snow. I had just finished my third month of treatment and was scheduled to go to DC for an appointment on Thursday, February 13, to be test dosed with the new antibiotic and to find out about my 4th month protocol. Just like last month, they were predicting a snow storm on the day of my appointment. Unlike last month, this time I believed them, and left the day before it was going to hit.

In doing this, not only did I make it ahead of the storm, but I also got to meet a sweet gal who is treating with Dr. Jemsek and who happened to have an appointment with him later that afternoon. We spoke for a few minutes while she was waiting to be seen by Dr. Jemsek. It was so nice to meet after all our FB conversations. She is a tremendous help to me and a blessing in my life.

After this, I headed back to the hotel for some rest and to wait. Would it snow and how much would we get? Well, snow it did. Although DC called a state emergency that day and most places were closed, Dr. Jemsek’s office was open! In situations like this, a core staff stays nearby given the complexity of the patients and the distances they come from.
All went well at the appointment. I was tested on my new antibiotic, Cipro, and had no reaction.

In addition, they explained some of the changes/additions for this month. I would be staying on the antibioitic Septra and the anti-malarials Mepron and Artemisinin, but I would be adding another anti-malarial medication, Coartem, to continue to attack Babesia. I would also be adding some biofilm busters to the mix as well–Lactoferrin and Xylitol. Biofilm busters are necessary because these bacteria hide in clusters, and if these clusters are not busted open, the bacteria will only come out later. This month, on Monday, Wednesday and Friday, I will run IV Cipro in the morning and IV Zithromax in the evening two weeks on, one week off, two weeks off for a 7 week cycle this time, going back to Dr. Jemsek’s on April 1.

The addition of IV Cipro is to start hitting the coinfection Bartonella hard, and the Zithromax will be continued because Babesia must be treated for at least 100 days at my stage, with multiple agents in order to get rid of it. It will be a rougher protocol than last month since we will now be attacking the various bacteria and protozoans directly. I will try to live in the moment though, recognizing the end goal.

Image

I went back to the hotel room straight after my appointment because, by this point, I was starting to feel its effects. I went to lie my head down and noticed I was feeling short of breath. This sensation of complete exhaustion but extreme shortness of breath lasted about 4 hours. It was alarming given that I was in a hotel room alone. I did call the afterhours service to ask them their advice and they told me to go to the emergency room if it got worse. Given that I’ve had most of these symptoms at one point or another, I have learned to try to ride them out. Thankfully, it went away on its own.

I left DC the next morning, Friday, February 14, to make my way back to Betsy’s. I then started my current round of treatment that Monday, February 17. This regimen seems to knock me out more than the previous treatments so I find I am sleeping more during the day as well as at night.

Honestly, I do not know what I would do if I had to work a 9 to 5 job right now. In fact, sometimes it seems like a lifetime ago that I had the energy to work the kind of hours that I did. I still hold out hope that I will be working to that extreme again … working full steam ahead in a way that makes a difference in this world. When I say working full-time, I may mean volunteering full-time. That’s not the part that is important. What is important is that there is so much heartache, so much suffering and so many who have so little that I want to be used by God to make a dent in these injustices. Whatever it is that I will do, it will be something I am impassioned about. Life is too short not to make it count. For now, I try to be faithful to the path He’s given me. It’s not one I would have predicted but one that does give me peace, joy and purpose.

Duncan and Marcy...Two of my favorite people!!! :)

Duncan and Marcy…Two of my favorite people!!! 🙂

One of the unexpected surprises of my time at Betsy’s is a boy named Duncan who just brightens up the house. He and Marcy (the dog) are always happy to see me when I arrive back from spending a few days with my mom. Duncan does his 7th grade homework in my room on the study chair and Marcy plops on the bed with me for her endless hugs. We have lots of talks while Duncan does his homework, and I get to learn a lot about how the mind of a 7th grader works!

On another note, my dad is on hospice at my mom’s, and I feel gratitude that he is well taken care of and not in pain. I talk to my mom daily and her positive attitude inspires me. I am fortunate to have a mom who sees the best in all situations. God has been so good to have kept my dad around for so long, and He is so good to have given my dad a wife who takes her vows so seriously. I feel she misses out on so much since she cannot be out the way your average retiree would be, but she does not complain. She is quite a role model to me.

Holding on to hope!!
“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of His Holy Spirit.” Romans 15:13

Month Three Visit

January, 10, 2014

This is the dreaded Mepron, which is taken to fight Babesia. It is a neon yellow color and has the consistency of paint. It is not easy to swallow and makes my body sweat as the time arrives to take it.

This is the dreaded Mepron, which is taken to fight Babesia. It is a neon yellow color and has the consistency of paint. It is not easy to swallow and makes my body sweat as the time arrives to take it.

During my second month visit to Dr. Jemsek’s, we had a snowstorm but Betsy and I were able to survive the elements and drive. This time, they predicted snow again but I assumed we would still be able to drive. Well, it hit so hard that all the roads were icy and the schools were closed. It was difficult for Betsy to go with me since her son is school age and was off for the day. I was concerned about missing my appointment and being off schedule. So … Betsy dropped me off at the train and, in spite of all the chaos of the trains being canceled and delayed, I made it to the appointment. I was 45 minutes late but I made it!

At this appointment, Dr Jemsek told me I would stay on IV Clindamycin but would be adding IV Zithromax. The IV Clindamycin would continue to target the spirochete form of Lyme, and the IV Zithromax would be added to start attacking Babesia head on. In addition, I would be taking the anti-malarial Mepron as well as the herbal Artemisinin to add to the battle against Babesia. Working these together helps prevent this protozoan from building up a resistance. I would be on a Monday, Wednesday, Friday schedule two weeks on, one week off, two weeks on, one week off. Because it is such a complicated science, this should only be done by a well-trained LLMD.

The protocol has been going well after a minor adjustment of adding some anti-nausea medications but unfortunately just the sight of Mepron, a bring yellow liquid with the consistency of paint, make my body sweat and go queazy. Dr. Jemsek says it has to be taken for 100 days to ensure we’ve gotten rid of Babesia, and this will be a day I will celebrate.

Holding on to hope!!

“The Lord is my strength and my shield; my heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song.” Psalm 28:7

Month Two: Return to Dr. Jemsek’s for Next IV Test Dose

Return to Dr. Jemsek’s for Month Two Protocol

November 27, 2013

Here I am pictured with my angel Dr. Jemsek

Here I am pictured with my angel Dr. Jemsek

Happy Thanksgiving everyone!!

Betsy and I returned to Dr. Jemsek’s on November 27th, the day before Thanksgiving, to have my next IV antibiotic test run and to learn what this month’s treatment regimen would be.

Dr. Jemsek explained that my last IV antibiotic, Merrem, is a broad antibiotic that targets the extra-cellular spaces allowing it to kill the corkscrew form of Lyme. He said that I will staying on Merrem but he will be adding a new one.

This month I will be getting IV Clindamycin, which gets inside the cell walls. He said it will help limit the spirochete form of Lyme, and that it sets the foundation for killing the coinfection Babesia. Both the Merrem and the Clindamycin will be dosed twice a day on Monday, Wednesday and Friday at 8 a.m. and 8 p.m. They will each run for about an hour meaning I will be on the IVs for 4 hours a day. On the off days, I will be running a bag of Lactated Ringers to help flush out the dead Lyme bugs that the IV antibiotics will kill.

I will also be taking oral Septra DS, which is used for killing Bartonella but is also used as a base for the anti-malarials I will be taking this month to target Babesia. In addition, I will take the supplement Artemisinin and the prescription drug Mepron, which are anti-malarials that fight Babesia. They will also be dosed on Monday, Wednesday and Friday.

This is a heavy protocol in terms of time and in terms of the amount of medications I will be on. But I am fortunate to be living with a nurse who will be able to observe me and assess me throughout this month’s treatment.

I do not start this new treatment protocol until Monday, December 2, so I am grateful to be able to celebrate Thanksgiving with my family before the heavy hitters begin. May you have a very happy Thanksgiving celebrating the many blessings in your life and thanking the Lord who is the giver of all good things. “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17

Do pray for me that I tolerate this new round of treatment well and that it kills the things that are needed so I can get well!

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.