Riveting blog by a wife, nursing mother and second year medical resident who found everything coming to a screeching halt when she developed Lyme disease. (But none of her doctor colleagues believed that....)
Lyme Disease Manifesto For My Dear Colleagues
Last year in March I was a nursing mom of a ten month old baby boy, a wife to my husband and a busy second year medical resident. I loved my residency and my life and had energy to do it all, and with a smile.
Last year in April I developed L’Hermitte’s sign. Anytime I would get the stethoscope off my neck to listen to my patient’s lungs I would feel a tingling into my buttocks and toes. My primary doctor sent me to a neurologist who thought I had a mild case of transverse myelitis. Lyme titer was done and was negative. My symptoms progressed to feeling seizure-like presentation, overwhelming emotions, headaches, light and sound sensitivity. The next two neurologists told me my MRIs were negative and that I needed to take a break from my busy life of a nursing mother and a resident physician, that this was all psychosomatic.
I went to see a psychiatrist who examined me, took a history that revealed intact coping skills and requested I go back to a neurologist for further evaluation of an organic cause.
The fourth neurologist I saw was the head of the division. He told me that all was normal and that I had a “oversensitive nervous system”. He told my husband, who was already struggling to comprehend my ongoing cognitive decline and lack of energy, that I “needed a vacation”.
Everyday I was losing short term memory, tasks were difficult to execute, I was getting lost driving and could not write the date on paperwork, I started having neuropathic pain. My family, who thought that I had some sort of mental breakdown were beside themselves, and I was losing their support.
I was so sick, I could not get off the floor. I did not have enough strength to lift my arms and wash my hair. I could not hold my baby, I could not go to work. When I wrote to my doctors about my progressive symptoms – they suggested neurontin and SSRIs.
I felt I was the only person that could figure me out. With great difficulty in concentration I would sit with my laptop researching what could be going on with me. Lyme disease kept coming out as the number one differential. Infection made sense to me, why otherwise would every system in my body be affected?
Going over my medical school books I did not find any diagnosis of “oversensitive nervous system”. Going over my family’s history the only diseases transmitted genetically besides stubbornness were hemorrhoids and hernias. This was neither.
I felt very alone. The doctors were unable to help with diagnosis, my family was confused and kept telling me to “pull it together”. As luck would have it, I suffered from all three things I inherited from the incredible women in my family, stubbornness being number one, and even with my infected brain, I was still working hard and determined to figure out what was wrong with me. Lyme disease, again, kept coming out on my searches. Then, I kept finding patients’ blogs. People just like me, similar symptoms, similar story.
I decided to reach out to a Lyme Disease physician who had decades of experience. He told me to go and see an infectious disease physician. Three days later, I was lying down in her office, in my scrubs, unable to put on any other clothes, barely able to walk. My heart rate was in the 120s.
She did tests and found I had positive Lyme C6 Peptide and a positive Bartonella titer. I started treatment with Doxycycline 200mg BID and then Rocephin IV. My cognition cleared up two weeks after treatment – I could think again. But my weakness, paresthesias continued. After the month of the antibiotics she suggested I stop and see how I do. A month after stopping the antibiotics I developed facial palsy. I was started on 10 weeks of IV Rocephin. After that I continued on oral antibiotics. I was able to function well, but anytime I would try to get off the antibiotics I would start experiencing fatigue, increased paresthesias, headaches; so I stayed on.
I could work, take care of my family and start gently exercising. But no matter what I did, I could not get off the antibiotics without my symptoms returning with a vengeance.
My new primary care physician tested me for more microbes and I tested positive for Borellia Hermsii. While on the antibiotics I was still functioning well, so other than realizing I could have died from Hermsii and how lucky I was to have had treatment, I kept plugging along my regular life.
In April of this year I worked 80+ hours per week. I had difficult time keeping up with my oral antibiotic and supplement regimen and became noncompliant. Three weeks into it, I started developing severe headaches, chills and sweats, swollen lymph nodes and fatigue. I am now on my third bout of IV Rocephin. I am also on oral antibiotic regimen and supplements to help support my body during this process. I will continue treatment until I am well.
Tick Borne Illness is a disease which we do not understand. CDC had over 40,000 cases of it reported in 2010 in the US. Every state had patients living with this illness. We as physicians have no idea how to treat it, unless it is caught early, within the first couple of weeks. Many people never find a tick and many never develop the rash, which contrary to popular belief is not always bulls-eye but maculo-pappular.
Ticks carry many pathogens, not just the Borrelia Burgdorferi, but Borellia Hermsii, Babesia, Bartonella, Anaplasmosis, Erlichiosis, Rocky Mountain Spotted Fever, amongst many.
As physicians we need better tools. We have no good tests for early Lyme disease. Only about 11% of people are positive on our standard tests within the first 4-6 weeks of presentation. Even the most sophisticated testing with the Lyme C6 Peptide reveals only 66.5% of the patients with Lyme Disease. If left untreated this illness can affect every system in the body. Studies reveal the spirochetes are faster than all of our blood cells and difficult for our immune system to conquer. The damage can be permanent and lead to complete disability.
Much controversy exists in the medical community regarding Lyme Disease. Some physicians believe it is treated easy, eradicated by a couple of weeks of antibiotics, and that the rest of the symptoms people suffer from later are due to a compromised immune system.
Other physicians think that there is sufficient evidence to suggest persistence of infection.
The truth probably lies somewhere in between. A recent study suggests persistence of the organism after serious long term antibiotics and reveals a need for different antibiotics than what we are using now and courses which are “pulsed”.
The truth is that we need to listen to the patient and treat each patient as the unique individual that they are. The microbes affect different systems and some are more affected than others. People should be treated with whichever medicines make them feel better. Antibiotics are not opiates, and if they help the patient function, then they should be on antibiotics, until they are better. They should also be on probiotics and nystatin. Physicians who do not feel comfortable treating Tick Borne Illnesses and feel overwhelmed with the complexity their patient brings should have a place they could refer their patient for further evaluation and treatment. It is unethical to ignore patient’s complaints and withhold treatment.
In near future, there will be better tests and we will have a greater understanding of this complex of diseases. We will have Tick Borne Illness panels that will test for the co-infections and we will figure out the best antibiotic cocktails to address this serious infection. In future every physician will be comfortable treating these illnesses. This is the hope.
In the mean time we are limited to the current testing. We have to make our patients a priority, we have to treat these infections fast and thoroughly.
I am fortunate that I belong to an institution which sets standard for the medical world. I am protected and nurtured by three wonderful physicians. Two of which have had a personal experience with Lyme. Two of the three physicians do not charge me for their services, the third one takes insurance. I am unable to afford treatment otherwise. It is expensive on so many levels.
Most people do not have this support. They are very sick and very alone. Abandoned by their families and their doctors. Their bodes very ill, unable to advocate for themselves, they vanish. Many become misdiagnosed with neurological illnesses, psychiatric illnesses and become home bound. Their lives previously rich and healthy are now non-existent. Some take their own lives.
We have to change the current situation. We have to figure out the Tick Borne Infections, and what makes our patients ill. We have to protect, trust and take care of our patients. We, after all, are Care Givers.
This is a movie by freeskier Angeli VanLaanen whose story motivated me to tell mine.
