Hello, my name is Lisa.
I met Deb at a fundraising event last year. While at this event, I ran into a woman I know, named Sue. I mentioned to her that my then 19 year old son, David, had Lyme Disease and I was frantic. We had tried antibiotics, neuro-biofeedback and something called Lens treatment which is Low Energy Neuro-therapy to help with improving cognitive function, motivation, and mood and motor skills. None of these treatments helped my son.
Sue told me that I needed to meet Deb because she had dealt with Lyme Disease with her daughter and now had a ministry to get the word out, including supporting and praying for those with this illness. To say I was desperate for direction is an understatement. To my amazement, Sue grabbed my hand, walked me over to Deb and introduced us. I knew, as we spoke, that Deb would be very instrumental in my life; I just didn’t know how much that would be so.
Some background: In June of 2013, David was eighteen and he started to complain of really being tired. I thought his fatigue came from living in Prunedale with his dad, going to school in Gilroy and working in San Jose, in addition to running around as young adults do. David had been diagnosed with ADHD at 17 years of age and struggled with cognitive function and basic execution of routine tasks. We had been transitioning to a new psychiatrist to do therapy and medication management since the prior year he had gotten into legal trouble for self-medicating to help his anxiety and depression. David’s experimentation with drugs resulted in his arrest. However, David felt he could function better using this substance. For the first time in his life he could think clearly, concisely and organize his thoughts. Even his anxiety and depression would go away. Both his father and I were horrified about the substance abuse and got him into all types of help as we had no idea he suffered from anxiety and depression. The remainder of 2013 we dealt with his legal issue and tried to get him appropriate meds for his anxiety and depression. By now David was on his sixth different medication. All of them had side effects and none had shown any great improvement for him.
David had increasing headaches and was very tired. He also acquired Mononucleosis after he graduated from high school. He went to the doctor to see if the Mononucleosis had come back. Since it had already been a year, the doctor didn’t think it had come back, but thought that David needed more sleep because of his schedule. A month, later, David was almost sleeping around the clock. David was falling asleep at work and took some time off. He didn’t get better. He was falling asleep everywhere, including at the doctor’s office.
His father was alarmed and thought David was on drugs again. I pointed out that David didn’t go anywhere, no one came over and he didn’t have any money. David was behaving very strangely. He was clearly very tired most of the time. He could hardly do anything and still struggled to stay awake. He would mention something that he had seen outside the house that was not believable or that he heard something that seemed far-fetched to me.
We then went to a Thyroid Specialist and a Neurologist that ordered a brain MRI wondering if David had blown something with the drug experimentation. All tests for illnesses and disorders were normal. We tried even more medications for ADHD, anxiety and depression. One of the medications made him faint, which I believe contributed to a car accident. We then stopped all medications to see if they were the reason for the fatigue. After a sleep study with another Neurologist, he was told he had borderline Narcolepsy. The neurologist and his primary physician also suggested Chronic Fatigue. I didn’t believe that however and was determined to figure this out. By now I was Googling everything I could think of. The one common denominator on all my searches was this thing called Lyme Disease.
I had seen a bite on David’s shoulder a few months earlier, so I demanded his physician test him for Lyme Disease. Since David had also been hanging out at Lake Anderson a few months prior, I asked for a bacterial test as well.
Years ago I had met a women whose son had some mysterious illness for about a year. He was desperately ill. It turned out that Stanford University finally diagnosed him with Lyme Disease. I thought this disease was rare and mostly on the East Coast. So in spite of knowing about this young man, we continued to camp locally, back-pack and hiked here in Point Reyes and Yosemite, I thought we would never get it.
David was finally tested on the Center for Disease Control’s recommended two tiered Lyme Disease tests. The test came back with an indicator for Lyme Disease and David’s primary referred him to a Rheumatologist and an Infectious Disease Specialist. His Rheumatologist consulted with another Infectious Disease Specialist about the test indicating Lyme Disease and she prescribed antibiotics. David started them right away and needed to be on them for three weeks. We thanked God we now knew what we were dealing with and I was thrilled we were on the road to recovery.
I had no idea that this two-tiered testing system usually does not come back positive for Lyme Disease and these tests can be particularly unreliable. I have learned that this two-tiered testing system only captures a couple of different variations of Lyme Disease. There are many, many variations of this bacteria; something like 300. The positive test result was nothing short of a miracle.
David started the antibiotic in October, 2013. Within a couple of days David could stay awake longer although he was still fatigued. I was so happy things were moving in the right direction, but little did I know we had only just begun our journey into the realm of Lyme Disease.
A week later we took David to the Infectious Disease Specialist only to be told he didn’t believe David had Lyme Disease. He said “he has something…but I wouldn’t call it Lyme Disease” and told us to take him off the antibiotics after two weeks. This doctor was more interested in a medication called Adderall David had previously taken for his ADHD. He demanded the name of the doctor who had diagnosed Lyme Disease, as he was going to call her and give her a piece of his mind for diagnosing this as Lyme Disease. We were horrified and discouraged by this doctor. We then had follow up visits with both Neurologists, who had done the Brain MRI and the sleep study. Both said to continue the antibiotics and stated that if it were their child, they would continue the antibiotics and find another doctor.
A doctor in San Jose confirmed David had Lyme Disease and said he would keep David on the antibiotic for a while. He was tested for co-infections and did not seem to have any. Again, I was praising God for seeing us through this as He had orchestrated all events to bring us to this point.
By December, 2013, David was back to work and was improving. He was still fatigued, but was clearly doing better. Things were looking up as David was doing well and his legal problem was coming along. This had been a tough year because, sadly, my brother and mentor, Michael, had died of a heart attack. I had to deal with David’s illness and legal issues without my brother seeing me through. I felt 2014 could not be any worse, but little did I know the path of Lyme Disease can go on and on.
David’s dad, Anthony, moved to San Jose in January, 2014. I thought this would help David with more sleep and a shorter commute. That month David stopped the antibiotic because he felt better and it was bothering his stomach. We thought he was over the Lyme.
Sometimes people with ADHD have trouble with cognitive functioning and his psychiatrist suggested Cognitive Behavior Therapy which we tried. David however started falling asleep again a lot. His psychiatrist said she didn’t think David was done with the Lyme Disease. The Infectious Disease Specialist agreed and put him back on the antibiotic. When I asked about co-infections, the Specialist didn’t want to refer David’s tests to a lab back East saying he didn’t want to stir up any controversy in regard to this illness. I didn’t pursue better understanding of this controversy issue. The doctor mentioned some of his patients are on antibiotics for the rest of their life.
David was sometimes confused by going to a doctor’s office when we were supposed to meet at another doctor’s office. He was also beginning to show up with friends that were down and out or were also ill with psychiatric illnesses.
It was at this time that I met Deb Gutierrez. Deb told me her daughter’s story of Lyme Disease and gave me the name of her great doctor. I didn’t think David was that bad, like her daughter and we were already going to doctors. After asking Deb dozens of questions and many emails over time, Deb quite frankly asked me when was I going to stop messing around and take David to this doctor in San Francisco that had 25+ years of experience with Lyme Disease. After talking to David’s dad, we decided to try this out. David’s dad got him to move back with him, with the dog and begin a new treatment. At this point, David took a leave of absence from work.
After seeing the doctor in San Francisco, we learned David had late stage Neuro-Psychiatric Lyme Disease and possible co-infections. This is also called Lyme Encephalopathy or Neuroborelliosis. David was put on 3000 milligrams daily of two different antibiotics. He started on the medications right away and basically went to bed for a couple of months. His symptoms included joint pain, sweating, severe headaches, insomnia, tremors, tingling sensations, and nausea. David also became more defiant, irritable, aggressive, suspicious and angry.
I would cry myself to sleep, visit him, call the doctor and call Deb for support. I researched Neuro-Psychiatric Lyme and shared the information with his dad, his dad’s wife and my husband. This disease varies from person to person. This debilitating illness and the co-infections can get into the brain, so I began to question whether David ever had ADHD or was it just an early manifestation of this illness. Lyme Disease can be very fast or slow growing and can even be dormant for a very long time. I recalled that David was hospitalized at age 11 for dehydration for a flu-like illness and Lyme Disease can often start as a flu-like symptom. David has had lots of mosquito bites, a weird bite I saw on his shoulder, spider bites in childhood, much exposure in the outdoors, so I realized he’d had many opportunities for exposure to a tick bite.
David started intravenous antibiotic therapy after 3 months of daily aggressive oral antibiotics in September, 2014. A nurse assisting David said that many young people in the San Jose area are getting Lyme Disease and requiring intravenous therapy. Two weeks after beginning intravenous antibiotics every day, David got a reaction called Jarisch-Herxheimir, which means his symptoms worsened as the Lyme started to die off. David at one time, became completely psychotic. I called the doctors office and I called Deb; she walked me through the psychiatric episode on the phone and reassured me things were going to be better, it was just a temporary difficult day and it would pass. She was right, he calmed down with a low dose of anti-psychotic medication, but there was other psychiatric behavior including anxiety, depression, OCD, bipolar, rage, rapid mood swings, autism and schizophrenia type behavior. Fortunately prayer and our faith in God helped us through. David started getting better after a few weeks of intravenous therapy.
I couldn’t believe there aren’t any support groups, medical facilities or 24-hour hotlines to help families.
We also found out David had a co-infection called Babesiosis. This malaria-like illness tends to hide until antibiotic treatment is started. The Babesiosis had to be treated separately to ensure toxicity of the liver does not occur. We now know that David will continue antibiotic therapy for both illnesses for a little more than a year.
We learned that Lyme Disease can hide, divide, go dormant and change itself. We learned that the body does not recognize Lyme Disease as an invader because it lives in tissues and cells and not in the blood stream. Only when it is properly treated does the body recognize it as an invader. The Jarisch-Herxheimier reaction David had experienced, is referred by Lyme Literate physicians as Herx and this is when Lyme is dying off, the toxins are being released into the blood stream and the body then recognizes it as an invader.
Lyme Disease is rarely diagnosed early, but if diagnosed early, it can be easily treated. However, if diagnosed late, treatment can go on for a couple of years and it is difficult to eradicate.
Ticks infected with Lyme can also carry co-infections, as many as 12 of them with more emerging. Sometimes a person cannot recover from Lyme Disease until the co-infection is addressed. David’s illness is going away with this treatment. He is getting better every single day. I am hopeful he will soon go back to school, work and resume his life.
Lyme Disease can impact you or those you love. If you own a cat or a dog, you can acquire it. Birds carry ticks as well. Not all ticks are really visible. Ticks can be the size of a pin point or a sesame seed. Some people will know they have been bitten because of a bulls-eye rash they develop or they see the tick. However, over 50% of people with Lyme Disease do not remember a tick bite or a rash. If you suspect you have this illness, you must see a Lyme Literate doctor, there are many here in the bay area including Dr. Amen and Dr. Stricker in S.F. who is currently treating David.
If you or a loved one have been diagnosed with a disease and the medications aren’t working, or you have migrating symptoms, please consider being tested for Lyme Disease and co-infections. Seeing many doctors is common with Lyme Disease patients and David saw many doctors before he had a correct diagnosis. David is now emerging as a person that is very smart, very polite, amicable, considerate and who has more ability each day to execute and focus.
I recommend a free documentary called “Under Our Skin” that can be viewed online. It provides a lot of information on Lyme Disease.
The San Jose Mercury News reported on the increase in Lyme Disease in the Bay Area in the summer last year.
Stanford University released a study in February 2014 about finding Lyme Infected ticks throughout the Bay Area in our parks and unincorporated areas. Newspapers across the country and the world are now regularly reporting the increase of this illness and trying to increase public awareness. Celebrities are coming out about their own struggles with Lyme Disease. This lack of awareness is also in our physician community so many people are being misdiagnosed or turned away and are getting sicker. What Deb is doing here is critical. Anyone of you or someone you love could be affected by this illness. Many of you probably know someone who is sick and is not getting any better who may just have this disease!
This is because Lyme Disease is called the Great Imitator. Its list of symptoms are long and varied and it presents itself differently in each person. Lyme Disease can mimic many diseases such as ALS, ADD or ADHD, Autism, Chronic Fatigue, Crohn’s Disease, Encephalitis, Fibromyalgia, Irritable Bowel Syndrome, arthritis, Lupus, Meningitis, MS, OCD, Parkinson’s Disease, Depression, Anxiety, Bipolar, Raynaud’s Syndrome, Rheuamatoid Arthritis, Scleroderma, Sjogren’s and Thyroid Disorders and that is just some of them.
In David most of his symptoms have been psychological and psychiatric: depression, irritability, disorientation, over or under emotional, too much sleep or too little sleep, difficulty falling asleep, anxiety, OCD, memory loss, confusion or difficulty thinking, comprehension issues, forgetfulness, word finding difficulty, headaches, arthritis and the ability to execute.
Deb has been a huge blessing as well by providing me with wisdom, encouragement and support through this journey. I thank you Deb for using your personal experience to reach out to help others who have to deal with this too. I thank you for being the hands and feet God uses to help me, my son and my family.
Not everyone has Lyme Disease. But there are people that are very functional with Lyme Disease and only have annoying symptoms. Or an immune event can take a person with Lyme from a functioning level to a complete disability.
I see a homeless person different now, or a wayward teenager, or a person talking to a cigarette, even people that have committed a crime, I now wonder, does this person have undiagnosed Lyme Disease? I think it is possible after this experience.
Please consider supporting Deb with her non-profit, Lyme Disease Awareness Foundation organization, her prayer group and spreading the word about Lyme Disease. You can also support Lyme legislation and write your Congress representatives that support Lyme research, testing and treatment. You can also help someone that is struggling with a debilitating illness that may be misdiagnosed. I am not calling everything Lyme Disease, but there are too many people misdiagnosed with other illnesses. People that have been sick for years are finding out that they have Lyme Disease.
My journey is not over, but My God is with me and providing a path for me and for David. David continues to get better each and every day. There are still ups and downs but the ups are outweighing the downs now. He is expected to be on treatment throughout this year but the improvements are becoming more and more apparent. He is eating better, taking an interest in his health, walking, doing some hobbies and handling more each day. He is cooperative, loving and amicable and starting to execute! I don’t see the ADHD, anxiety or depression symptoms! Thank you Jesus!
Thank you again Deb for doing a fabulous job for those in desperate need of assistance. May you be blessed as much as you bless those around you. With God, your compassion for people who are ill; and your direction, David is on the road to recovery!
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