My Family's Lyme Disease Story: Part I

 

 

 On September 10, 2011, I returned home from a shopping trip to sit down for a date-night movie with my husband, Frank. Just as the opening credits started to roll, Frank announced that he felt sick and needed to go to bed.

I was shocked. I thought he was joking at first. This is a man I had known for 19 years. He'd never been sick all of a sudden like that. Normally, if he didn't feel well he would just tough it out through a movie, but to suddenly feel so sick he can't even sit on the couch, never.

That night Frank vomited 8 times and had other horrible flu-like symptoms such as night sweats, congestion, headache, light sensitivity, and profound fatigue.

He started to have severe respiratory problems and we thought it might be pneumonia. I worried because his skin became pale and yellowish. He looked like he was starting to have liver failure.

I thought he might have Tularemia, also known as "Rabbit Fever," because we have a lot of rabbits in our yard and he had just mowed the lawn. Tularemia is passed through ticks and other insects after becoming infected by a mammal, often rabbits, or through inhaling the feces of infected animals. It involves fever, cough, and many symptoms he had. Little did I know how close I was.

When we went to the doctor 2 weeks later and Frank was diagnosed with severe bronchitis, it made sense. He had been having a lot of respiratory symptoms.

The primary care doctor gave Frank antibiotics and inhaled steroids. The lung x-rays came back "clear" but there was an unusual spot, an air pocket, in the lower lobe of one lung. Frank was told to come back in a month for a follow-up x-ray.

Instead of the antibiotics and steroids making Frank feel better, he got rapidly, dramatically worse. The symptoms were unbelievable- cough, congestion, fever, joint pain, difficulty standing and walking, anxiety and panic, low blood pressure, slow heart rate, vision problems, dry mouth and eyes, dizziness, extreme leg pain, weakness, difficulty sleeping, confusion, sore tongue, difficulty regulating body temperature, tingling and numbness in his arms, and difficulty breathing.

It was as if his entire body was shutting down. We thought that he might be having a reaction to the steroids. I didn't sleep for a whole weekend because I just sat up to make sure Frank would make it through the night. He told me to take out a life insurance policy on him and leave him in a medical facility somewhere.

When Frank returned to his primary care doctor on Sept 26th, he was already having cognitive problems. He was confused, had slowed thinking, and was getting lost in familiar places. His doctor immediately diagnosed him with Lyme Disease based on his symptoms and gave him a prescription for 100mg of Doxycycline twice a day for 2 weeks. The doctor said Frank should feel better within 10 days.

We felt relief at having a diagnosis without going through the problems of testing. Lyme Disease tests have a high rate of false negatives. I worried that the length of treatment would not be enough. I had worked for Sandy Connors whose daughter, Marlena, was featured in the Lyme Disease documentary, Under Our Skin. Sandy, a Lyme Disease advocate, had educated me on the difficulties of Lyme Disease diagnosis and treatment.

I began to research. As I scoured the internet, watched Under Our Skin, and read books, Frank got worse. In addition to all of his other symptoms, he started having profuse night sweats, interrupted sleep, stabbing bone pain in his shins, tingling and numbness in his extremities, migrating joint pain, pain in the soles of his feet, nerve pain on his legs, sensitivity to light, headaches, uncontrollable vomiting, and reduced appetite.

Then a rash started. First as just a red spot the size of a quarter on one leg and then spreading to multiple spots over both legs. As the spots grew, Frank's legs and feet began to swell. His legs from the knees down, including his feet, swelled to about twice their size.

The Erythema Migrans Nodosum rash as it was just starting

The rash wasn't a typical Lyme Disease rash (Erythema Migrans, or "EM" rash). It was much "angrier" looking and had tender lumps on it.

My research had me worried and wondering about several things. The first was the steroids Frank had taken causing something called a "Lyme Disease Steroid Disaster." This is an increase in the severity of symptoms due to steroids lowering immune function.

The next was the possibility of other tick-borne infections known as "co-infections." These included Babesia, Bartonella, and Erlichiosis.

And I worried about something called a "Herxheimer Response" or "Herx". This is a worsening of symptoms due to a flood of bacterial die-off toxins. I felt we needed an expert to help us sift through what was going on.

Finally, Frank returned to his primary care doctor on October 4th. His doctor called in their infectious disease specialist. They both concluded that there was "no way" Frank had Lyme Disease because he would have been better by now. They didn't think the rash looked like an EM rash either. The infectious disease specialist said he didn't recognize the rash and couldn't figure out what Frank could be sick with.

They refused to test for Lyme Disease or any co-infections, and instead tested for Legionella, the bacteria responsible for Legionnaire's Disease. They dismissed me when I suggested that other people in the family would be sick as well because we all shared the same environment.

When the blood test results came back, Frank was negative for Legionnaire's Disease but the rest of his results were nothing less than shocking. Two markers of inflammation, C Reactive Protein and Sedentation Rate, were sky high. His white blood cells, platelets, monocytes, and neutrophils were elevated, and his lymphocytes, red blood cells, and hemoglobin were low.

Frank's doctor ordered a test for Mycoplasma and sent him to a rheumatologist. The rheumatologist diagnosed the rash as Erythema Migrans Nodosum (we later found out that this rash is associated with Bartonella) and ordered tests for Sarcoidosis, Lupus, and Parvo Virus. He did not believe it could be Lyme Disease or any co-infections but ordered tests for Lyme Disease and Babesia. He wanted Frank to stop the antibiotics and start on oral steroids. Frank refused until the tests came back, knowing that steroids could make Lyme Disease worse, even fatal.

We waited for the test results to come back. I started looking for a "Lyme Literate Medical Doctor."


Stay tuned for Part 2: Diagnosis

My Family's PANDAS Story: Just the Beginning

On April 4, 2012, My  9 year old daughter, had difficulty swallowing a gummy candy and had a long-lasting panic attack. There had been a lot of conflict and chaos in the house. L’s nearly 13 year old brother had been severely acting out and we had started looking into psychiatric assessment for pediatric bipolar disorder.

There are 5 kids in the house, at the time their ages were 13, 11, 9, 7, and 3 years. An older brother, age 22, was living in NY. For about a week there had been a lot of outbursts in the house, mostly from the 13 year old. I once commented that the issues seemed “contagious.”

In addition, several family members were having mild medical symptoms including congestion, runny nose, and difficulty swallowing.

L had been having problems with a friend starting to bully her at school. Steps were being taken to resolve the issues at school and L was feeling fine about going to school. She loved school.

The panic attack on April 4^th included shaking, hyperactivity, wide pupils, feelings of impending doom, extreme sensitivity to sound, the feeling of something caught in her throat, burping, and increased urination. I called the doctor's triage line. They said to give her some tea and try to get her to settle down. It took hours for her to calm down enough to sleep.

On April 5^th the exact same scenario played out that evening.

The next day, April 6th, was Good Friday and a day off from school. The entire day was filled with anxiety. L had feelings of impending doom and an extreme fear of choking. She would only eat bananas and drink tea. She was constipated but made multiple trips to the bathroom, even out in public. She would not eat ice cream when her dad took her to the ice cream shop with her siblings.

She developed a slight fever and vomited. She was congested, had a slight runny nose, abdominal pain, and a cough (only noticed in her sleep). She had separation anxiety and wouldn’t sleep alone.

The next day was exactly the same except she replaced bananas with applesauce. She had an expression of quiet panic. She would just stare straight ahead with a terror stricken look. It was as if she was afraid to move. She wouldn't even look at my dad, her grandfather, when he came over.

I knew by that morning that something was very, very wrong. I thought maybe an intestinal blockage or Lyme Disease, but I wasn’t really sure. I called the weekend pediatrician on call who thought L was fine. I asked about Lyme Disease, but it was dismissed.

The next day was Easter, April 8^th, and L would not eat any candy in her Easter basket, which is extremely unusual for her. She still had all symptoms but now would only eat toast. L was either unaware of the severity of her symptoms or was downplaying them. She would have a total emotional meltdown at even being asked questions about symptoms.

She saw her pediatrician on Monday April 9^th. Her pediatrician felt that all of her symptoms stemmed from the bullying incident at school, and she had coincidentally, simultaneously gotten a viral stomach illness. 

I brought up the possibility of Lyme Disease but the pediatrician would not test her because she said her symptoms were not consistent with that. She had even had an embedded deer tick several years before. I knew that her symptoms could be neuropsychiatric symptoms of Lyme Disease, especially after my husband's ordeal 7 months earlier.

L restricted her eating even more over the next few days. At some point, and it could have even been the week before, she developed throat clearing (3 different sounds, alternated) and head rolling. Both of these were tics. L also spit frequently, especially after eating, and could often only lick her food. She had already lost 5 lbs. She was too sick and too scared (separation anxiety) to go to school.

I researched Lyme Disease and came across similar symptoms. In the process, I came across information on PANDAS as well. It seemed to fit perfectly. I couldn't believe how exactly the symptom description matched! I remembered that I had just read about PANDAS in Bipolar Kids.

L returned to the pediatrician on April 12th. Her pediatrician lectured her on eating properly and not eating in a “weird” way. She told her she was upsetting me and she needed to keep a food diary that I couldn’t help with. The pediatrician wanted her to see a dietitian and a therapist and felt it was still just psychiatric from the bullying incident.

When I brought up the idea of PANDAS, her pediatrician felt that it only involved tics and didn't recognize the head rolling and throat clearing as tics, but reluctantly did a throat culture. The rapid test was negative and we were sent on our way with no follow-up instructions. The pediatrician was on vacation the following week.

On the health report from that day's visit, her pediatrician had put in a diagnostic code for PANDAS under "Diagnosis." It said "suspected PANDAS," but at least it validated my suspicions and gave a diagnostic code that could be used. It proved to be important later when getting bloodwork or backing up a PANDAS diagnosis, even though the code was really just a catch-all anxiety code.

On April 14^th the strep culture came back positive. This supported a PANDAS diagnosis. A prescription for 5 days of Azithromycin was called in to the pharmacy because L is allergic to Amoxicillin. There was no information given on PANDAS or any follow-up suggested. It was treated just like a regular case of strep.

I started emailing and calling for expert PANDAS help.

Symptoms continued for the 5 days of antibiotics, though the anxiety was somewhat better. Symptoms waxed and waned. There seemed to be a loss of motor function, though subtle. L complained that her handwriting looked “messy” on a couple of occasions.

Two or three days after stopping the antibiotics L started restricting eating even more, and some days only had limited liquids (broth, PediaSure, etc). The tics increased. We became very concerned that she would need to have to go to the hospital for a feeding tube.

On April 24^th I spoke to a psychiatric nurse familiar with PANDAS, and a psychologist with experience with PANDAS. Both agreed that L sounded like she was suffering from PANDAS. Both sent resources.

On April 26^th L went to a new pediatric practice and saw a Nurse Practitioner because the pediatrician was on vacation. She ran some bloodwork, including her ASO titer. She thought it could be PANDAS/PANS (and now that she had researched it, was suspicious of other kids in the practice), but thought it more likely it was Eosinophilia or just general anxiety.

On April 27^th L’s ASO titer came back elevated, supporting PANDAS/PANS. I asked that she be immediately placed back on antibiotics, but the nurse didn't want to do anything until she saw a specialist or the pediatrician came back from vacation. I hoped L could eat enough to keep from needing a feeding tube.

May 1^st was a difficult day as L was very emotional and had abdominal and throat pain. The tics continued, even in her sleep. She was still having trouble eating. She looked pale. She would have a complete meltdown if I looked away from her for even a second.

She desperately wanted to eat, but just couldn't do it. She would make lists of the food she wanted to try to eat the next day. In addition to the severe fear of choking restricting her eating, she began to have a level of body dysmorphia due to rapid weight loss, very ritualistic eating (OCD), and other anorexic tendencies (for example, making food for others but not eating it herself). She also had some contamination fears surrounding food. She desperately wanted to eat, and would cry about it, but was too scared- literally terrified.

A week later we saw another pediatrician who was supposed to have experience with PANDAS. After waiting hours to see him, he didn't really talk about PANDAS/PANS at all and didn't seem convinced that her throat clearing and head rolling were really tics. He felt everything stemmed from allergies and that she should immediately have extensive allergy testing.

Though he wasn't convinced it was PANDAS/PANS, he said we could have her tonsils removed, "pulse" antibiotics by following a 2 weeks on/2 weeks off schedule, and look into having strep injections, explained as being like allergy injections. I had heard of having tonsils removed as a PANDAS/PANS treatment, and pulsed antibiotics for Lyme Disease treatment, but I had never even heard of strep injections.

He did not run any tests and did not think anyone else in the house should be tested for strep. He gave no advice on when we could expect her to be able to go back to school. We left exhausted and deflated.

Symptoms continued as we waited for her new primary care pediatrician to come back from vacation. She was having restricted eating, anxiety, ADHD symptoms, emotional lability, etc. Her tics continued.

I decided to have the family tested for strep anyway, especially because I was feeling sick. I tested positive and so did my 13 year old son (the one having the pediatric bipolar symptoms, all Bipolar symptoms went away with antibiotics).

On May 15th, we had our appointment with the new pediatrician. It was horrible! She wouldn't listen to anything I had to say, and basically told me she would only discuss it with another doctor. She wouldn't look at any research I had brought to show her. She repeatedly contradicted herself as she demonstrated how little she knew about PANDAS/PANS, or even OCD.

She believed L probably did not have PANDAS/PANS and could not believe she hadn't been to school since April 5th. She told me to get her back into school immediately, as if that was more important than her eating.

She repeatedly said that she had a feeling I wouldn't keep her as L's pediatrician, so much so that it was more like she was telling me not to come back.

The only good thing to come of the entire experience was that we left with a prescription for 2 months of Keflex. I think she just wanted to get rid of me, but I didn't care because I now had antibiotics. And she was right. We never went back.

Since L wasn't really eating during this time, taking her liquid antibiotics was difficult. She had to take them 3 times a day. First she would cry and cry, and try to work up the courage to take them. Then, when she was finally able to take a dose, she had a set ritual she had to follow. It could take up to 45 minutes for her to take a dose.

As with eating, she would spit a lot after taking medicine. And the stress of taking the medicine would cause a temporary increase in her tics.

A couple days into taking the Keflex, she started to have an increase in her anxiety and had frequent urination. Then she started with medical symptoms including fever and a sandpaper-like rash all over her torso. My oldest son had had Scarlet Fever at age 2 and the rash was exactly the same, except she didn't have the redness.

I had been told there can sometimes be a worsening of symptoms when antibiotics are started, but this definitely coincided with something medical. I gave her some Ibuprofen and it rapidly reduced her anxiety.

By May 22nd, her symptoms had reduced enough where she felt comfortable going to school for a 1/2 day. It was a little bit of a hard transition because she felt things were different with her friends.

She went to school for another 1/2 day on the 23rd and 24th, but by the 25th her symptoms were significantly reduced and she started going for full days. I walked her because she still had anxiety about the school bus.

She could now take her medicine on her own and it only took a couple minutes, though she still needed to take it with chocolate milk.

The next day was a rough day. She had increased anxiety and tics. She even started a new tic- a deep sigh. The day was filled with "checking behaviors" (can you die from sweating? can you die from eating too much? can you die from lifting heavy objects? etc.)

The next month followed the same pattern of ups and downs. There were periods of increased anxiety, OCD, and tics that corresponded with medical symptoms like fatigue, flushed cheeks, and stomach pain.

But right around the end of the 2 months of antibiotics, the symptoms all faded. The rest of the summer was healthy, happy, and just plain normal. We almost forgot that there was PANDAS.

We finally had an appointment with a psychiatric nurse specializing in PANDAS. She said L had very classic PANDAS and she could easily officially diagnose her with PANDAS based on her health records, health diary, test results, and a PANDAS/OCD scale.

She said, especially because it was caught early, she may never have an exacerbation again. We, however, are taking it one day at a time. We are trying not to let our guard down too much. We try to stay healthy, be aware of any strep exposure, and keep up with her health diary. But, I must admit, every time I hear her clear her throat, I jump a little bit.