Who knew that Abraham Lincoln was an unknowing, but hopefully effective Lyme Activist?! While he was busy fighting a War, freeing slaves, and reuniting a divided nation, he also tackled health care (sounds oddly familiar,eh?).
During the Lincoln administration The National Academy of Sciences was formed. This (impartial) group worked to gather scientists to discuss and advise the government about all matters scientific. After 150 years this was expanded into 4 Academies of which the Institute of Medicine, (IOM), was one.
With much criticism of bias (which was blatant), a meeting recently took place regarding the state of chronic Lyme. This meeting was ordered by a Congressional subcommittee to clarify the plight of Lyme disease patients, Chronic Lyme disease in particular. Information garnered from the meeting and comments submitted from scientists and physicians will be used to draft a report for Congress. Hopefully this will lead to greater funding and support of our illness. The report should be completed at the beginning of 2011. I was indirectly involved in the meeting. Here are the comments that I submitted:
I am a published author and physician currently practicing medicine in eastern Massachusetts . My medical partner and I have treated many Lyme patients, both acute and chronic, over the past 15 years. Unfortunately, the number of Lyme patients has steadily grown as the incidence of Lyme disease has tripled in our region in the last 2 years. I have also had personal experience with acute and chronic Lyme, having grown up in Cape Cod. I offer my recommendations below. Please consider these while drafting your report.
1. There is an urgent need for multidisciplinary centers, focused on the treatment, research and cognitive rehabilitation for patients suffering from chronic Lyme disease. Presently there are no centers that recognize and manage such patients effectively. This growing group of sufferers has been labeled "Post Lyme Disease Syndrome," implying that active infection is no longer problematic. Scientific evidence was presented to the committee demonstrating the existence of dormant and relapsing active chronic infection.
2. Chronic Lyme Disease must be redefined. It is a disease complex which results from numerous infections, and injury to brain, nerves, connective tissues, organs, bowel, genitourinary tract and more. This complex has devastating physical and psychosocial consequences. Acute Lyme disease and acute Rickettsial diseases were well represented in the meeting, but there was no substantial discussion about chronic Lyme.
3. Chronic Lyme patients suffer from infections of the brain (Limbic System in particular), as well as other organs including bone. Borreliia is a Treponemal bacteria capable of penetrating all tissues, much like Syphilis. This important fact is not recognized by most physicians and the public at large. Necropsy studies of patients who have died from Lyme disease, be it suicide of encephalopathy, demonstrate "chronic meningitis, the occlusive meningovascular and secondary parenchymal changes that we found are similar to those occurring in the meningovascular form of neurosyphilis." (Acta Neuropathol (Berl). 1990;80(5):568-72. PMID: 2251916)
4. Psychiatrists and psychologists must be educated, and included in further meetings. The leading cause of death from Lyme disease is suicide, yet this was not mentioned in any discussions. I practice in one of our nation's oldest and largest Lyme belts and am surrounded by major academic centers, yet there are no psychiatrists or psychologists that I am able to refer my patients to, experienced in the treatment of the psychological manifestations of chronic Lyme disease . Most psychiatric manifestations are due to brain involvement as well as the severe isolation and lack of community and medical support.
5. EEG, brain imaging studies, and pharmaceutical trials are needed. Psychiatric symptoms are frequently triggered by excess stimulation (light, noise and emotional stress). Anti-seizure medications such as Lamictal, Neurontin, and Ativan have proved most effective in our patients. Unlike classical depression, patients suffering with Lyme associated depression remain interested in their environment and loved ones. Unlike classically depressed patients,
Lyme patients miss their premorbid functional state, rather than shunning it. Antidepressants are often ineffective and often exacerbate preexisting insomnia, headache, and mood lability.
6. Cognitive decline, learning disabilities, memory loss, loss of balance, loss of motor strength, bone pain, dental pain, varied urinary and bowel symptoms, sensory disorders which include neuropathic pain syndromes (shooting nerve pains, vibratory sensations, headaches, noise and light intolerance), visual disturbance, insomnia, and mood disorders are the primary symptoms in our chronic Lyme patients. The only chronic Lyme symptoms discussed with any depth were fatigue and joint pain. Though important, these symptoms are not the primary concern to chronically infected patients. During the proceedings, the only clinician, a rheumatologist who specialized in chronic fatigue and joint pain, failed to mention these symptoms and the need for clinical trials. No clinical or research based neurologists were included in the panel.
7. Studies are needed to investigate hormonal deficiency and hormonal disruption common to chronic lyme sufferers. Many patients are deficient in the pituitary hormones ADH, TSH, and ACTH. They commonly suffer from premature menopause, and ovulatory dysfunction, particularly problematic in adolescent girls and young women as such deficiencies are known risk factors for bone loss, as well as physical and psychological symptoms.
8. Programs providing counseling for pregnancy concerns must be developed. Transplacental infection is well described in the literature (Gestational Lyme borreliosis. Implications for the fetus.
Rheum Dis Clin North Am 1989 Nov;15(4):657-77). This is a major public health concern as children born to actively infected mothers suffer a wide range of learning and developmental delays in addition to blindness, and fetal death. This important topic was not mentioned in the meeting. Clearly education of all obstetrician gynecologist and the public at large must be undertaken. Currently all expectant mothers are screened for Syphilis, no screening for Lyme disease is done, even in heavily endemic regions.
9. Clinical collaboration is needed with veterinarians as their research and literature offers the bulk of information of many co-infections, particularly Bartonella. As mentioned briefly in the meeting, Bartonella infects nerve, bone and bone marrow, dental tissue, and down regulates the immune system, perpetuating chronic infection.
10. Recognition and investigation of Tick borne bacteria and protozoal contamination of our nation's blood supply must be studied. A program to monitor blood banks must be developed to limit this serious threat to national health.
11. There is an urgent need for educational support and recognition of learning disabilities and psychosocial trauma in children and adolescents suffering from chronic Lyme disease. Schools, community social workers, and pediatricians must be informed of this growing problem. As shown on the CDC website, the most commonly infected age group for Lyme is the pediatric population. Only one pediatrician served on the panel, and his discussion was limited to diagnosis and treatment of acute Rocky Mountain Spotted Fever.
I would like to thank the committee for addressing this growing epidemic which has become a major public health concern. It was heartening to see opposing medical groups begin a meaningful dialog necessary to better understand the nature of this disabling and complicated disease complex, we call Lyme disease. It is vital that meetings continue and that funding be made available as soon as possible to address this growing national epidemic.