Nolan Schaefer and Lisa Latella were married in the summer of 2005. Nolan's hockey career took them to Cleveland that Fall. There was a lot of travel during the year as Nolan was called up to the San Jose Sharks of the NHL several times. During the hockey season Lisa was walking in a wooded area almost every day. This is the most likely place where Lisa contracted Lyme disease, but they will never know for sure, as they never found a tick or saw a rash. In the off season Nolan and Lisa live in Connecticut, a state notorious for lyme disease, but it didn't help nearly twenty doctors figure this mystery illness out any sooner.

     The first and only sign of Lyme disease came in the form of what was thought to be a knee “injury”. Although looking back Lisa also complained of fatigue, but since she was very active she attributed it to her rigorous exercise program.  This and many other symptoms continued to be explained away until her diagnosis. She had noticed a slight pain behind the knee while working out, but thought it was subsiding until she developed obvious right knee swelling while washing the dishes one evening in June 2006.  She saw an orthopedic doctor, and he dismissed the pain as a possible twist or strain to the knee and perhaps a slight tear to the meniscus.  She was told to treat with ice and rest and anti-inflammatory medication, in hopes the injury would go away. Later that week, she shut the front door, and experienced such excruciating shoulder pain, that it was necessary to put that shoulder in a sling.  Another “injury” the Schaefer’s thought, as well as the doctor.  And the timing of the two joint problems so close together was just dismissed as bad luck.

After a clean MRI, normal blood-work, and declining exploratory arthroscopic knee surgery, Lisa and Nolan sought a second opinion and she was diagnosed with patello-femoral syndrome, a common knee problem for young women.  Physical therapy was prescribed and the pain and swelling subsided for a few weeks, but as soon as she resumed normal activities, it became worse than ever, and while trying to rest the right knee again, the left knee developed the same symptoms.  The pain was much worse this time, and she had trouble even getting from the couch to the bathroom, but after 3 visits in one week to the orthopedic, he was still confident it was just bi-lateral patello-femoral syndrome and told her to continue with physical therapy on both knees.  Lisa took it upon herself to see a general practitioner, where she explained her knee problems as well as every other strange symptom she could think of, no matter how small, in the hopes she would find an explanation.  That was the beginning of the long road Nolan, Lisa and their family traveled for one year, never meeting anyone who strongly suspected lyme, or tested for it properly.  By the time Nolan’s hockey season started in October of 2006, Lisa was nearly incapacitated with two “injured” knees, a recovering shoulder, and unbearable back pain.  All problems seemed to get better and would then return worse, leaving everyone baffled and discouraged.

     Early in October, Nolan was re-assigned to the AHL in Worcester where things continued to get worse.  Lisa could not lie in a normal bed, walk up the stairs, or walk more than a few steps.  While staying in a hotel Lisa developed new symptoms including heart palpitations and flu-like symptoms.  She never felt so sick, but no one connected the sickness with the joint pain.  After several trips to the urgent care there, Nolan tried to use his resources through hockey, and go to the doctors assigned to the team.  The first doctor thought anxiety from the move to Worcester, or an untreatable connective tissue disorder was to blame and told Lisa to continue to do physical therapy. After several visits due to increasing pain, he went as far as to say she was taking advantage of her husband’s job by coming in to see him so often.  She asked him for a second lyme disease test, and was told it came back negative.  The second doctor, who appeared to be an angel, said he would take over the case and promised the couple that they would figure it out and get Lisa better.  They were grateful he ordered a ton of tests, but was very hard to get a hold of, and often disappeared for weeks at a time, not returning their phone calls.  Lisa’s case seemed to be too challenging and too time-consuming for “the best doctors”.  

    Lisa went for a brain scan, bone scan, echo-cardiogram, multiple MRIs, and to multiple specialists.  The only tests that showed anything were the MRIs of her shoulders.  She was suffering with severe bursitis and tendonitis, but without explanation.  These are typically overuse injuries, and Lisa's activity level was extremely low.  Lisa, again, strongly suspected lyme disease. It was the only possible explanation, so she asked the doctor for three weeks of doxycycline, what Lisa had read to be the standard treatment for lyme.  They both agreed that at this point that the potential outcome would outweigh any risk there was in taking antibiotics unnecessarily. Lisa also asked to be referred to an infectious disease doctor at this point, but the orthopedic discouraged her and responded by saying that "they would only throw a wrench in what we are doing." He gave Lisa her first cortisone shot (big mistake), prescribed five days of doxycycline, and told Lisa he would only prescribe more if she saw a difference.  Lisa begged for the full three-weeks, stating that if the diagnosis was correct she feared creating a "super-bug" with a shorter dose of antibiotics.  Needless to say, there wasn't a miracle after 3 weeks, and the medication was stopped.

The couple struggled through the rest of the hockey season. Lisa tried to focus on her physical therapy since there was no medical answer.  A bomb was dropped when Nolan was loaned to Hershey Bears, six hours from where they were currently located. Lisa's mother then took family sick leave to come stay in Worcester where Lisa was showing some improvements in physical therapy.   She had found a gifted and caring physical therapist, who tried everything she could think of to get Lisa functioning again.  During this time Nolan was called up to San Jose for a week then sent back to Hershey. He was in Hershey for a couple more days then called up again to San Jose for three weeks and eventually traded to the Pittsburg Penguins who then re-assigned him to Wilkes-Barre, PA. The couple re-united there and battled through the rest of the season seeing more doctors, physical therapists, and acupuncturists, and others while sleeping on the floor of a hotel in Pennsylvania, because the back pain made the hotel bed intolerable. No symptoms improved, no diagnosis was given, and out of desperation, Lisa agreed to try a round of prednisone.  Lisa had a terrible feeling about taking it, and had to force herself to try it.  Little did she know that her intuition was right, and that prednisone was probably the worst thing for someone with lyme, as were her cortisone shots, and prescribed long term use of anti-inflammatories.

     Going home for the summer brought some hope even though the couple still hadn't figured anything out, and they just searched for their latest physical therapist. After a friend told Lisa about a lyme specialist in New York, and another friend called to tell her about a girl with lyme disease with similar symptoms, Nolan searched on-line, found a doctor, and made an appointment for that week.  The couple went to the appointment with the thought it would be one more thing ruled out, however, the doctor immediately began treatment. He said that the symptoms were too much to deny, and the blood tests he gave Lisa came back positive for Bartonella, a co-infection of lyme. They were thrilled and shocked to have a diagnosis but it didn't make things easier. Lisa started trying different oral antibiotics, felt much worse for a while, and is now taking them intravenously.

     That is where they are today. They continue to struggle with this terrible disease. They fear that it may have caused permanent damage to her joints and nervous system since she had it so long before detection.  They continue to keep a positive attitude and are hoping for the best with the intravenous treatment. It was a very hard year for everyone involved and it has changed their lives. They have a greater appreciation for life and love. This is why they decided to start this website. If one person can be helped, if one case can be avoided, then the website is a success.