I feel like my feet are slowly dying. I can’t feel cold in them now in many places and I have patches of persistent numbness. I have recurring temporary pain and tingling as well. When I asked a Kaiser neurologist about this very recently, I was told that I’m not alone. Many other people are having this mysterious nerve damage in the feet. When I asked about impaired blood flow to my feet, which looked mottled, I was told to check with my Kaiser primary care doctor about that.
This was one of several surprising comments during the visit. Was my Kaiser neurologist not aware that impaired blood flow damages nerves and could explain this mystery she spoke of? She seemed quite uninterested in why. To paraphrase, she said,
“We don’t know why. We have tests for small fiber nerve damage, but we can’t tell you the cause.”
Small Fiber Nerve Damage Risk Factors Absent
This left me sort of astounded. Are there no research laboratories? I don’t have any obvious risk factors for neuropathy. I have not taken chemo drugs, I do not have diabetes, HIV, or hepatitis C. I have not taken excess zinc or B vitamins, my heavy metal panel is normal, and I’m not that old. Why my feet are going numb (and this morning my entire right arm) is supposedly a complete mystery to Kaiser neurology. The neurologist carefully avoided making any comment about the fact that I had multiple tick bites, a blood bleed in my eyeball, stiff neck, loud tinnitus, random temporary blindness, fatigue, joint pain, stabbing pains, sparse non-inflamed folliculitis, muscle twitches and strange buzzing vibrations, all symptoms of neurological Lyme disease and co-infections. So yeah, complete mystery.
Understanding Small Fiber Nerve Damage: A Challenge for Kaiser Permanente
Small fiber nerve damage, or small fiber neuropathy (SFN), presents a complex and often perplexing challenge for healthcare providers, including those at Kaiser Permanente. This condition primarily affects the small nerve fibers in the peripheral nervous system, which are crucial for transmitting pain and temperature sensations, as well as regulating autonomic functions such as heart rate and digestion.
What is Small Fiber Neuropathy?
Small fiber neuropathy occurs when the small unmyelinated C fibers and myelinated Aδ fibers are damaged. These fibers play essential roles in sensory perception and autonomic regulation. Symptoms can range from tingling and numbness to severe burning pain, often beginning in the feet and hands before progressing to other areas of the body.
Symptoms and Progression
Patients with SFN may experience a variety of symptoms, including:
- Pain: Often described as burning or stabbing, particularly at night.
- Sensory Changes: Tingling, numbness, or hypersensitivity to touch.
- Autonomic Dysfunction: Issues such as abnormal sweating, dizziness upon standing (orthostatic hypotension), and gastrointestinal problems.
- Skin Changes: Discoloration and abnormal sweating patterns can also occur.
The progression of symptoms can vary significantly among individuals, making diagnosis and treatment particularly challenging.
Diagnosis Difficulties
One of the primary hurdles in managing SFN is its often elusive diagnosis. Traditional nerve conduction studies may not reveal abnormalities since these tests primarily assess larger nerve fibers. Instead, skin biopsies measuring intraepidermal nerve fiber density have emerged as a more reliable diagnostic tool. However, many patients remain undiagnosed or misdiagnosed due to a lack of awareness about the condition among general practitioners.
At Kaiser Permanente, as with many healthcare systems, there is a pressing need for improved diagnostic protocols and greater awareness among healthcare providers regarding SFN. This is crucial not only for accurate diagnosis but also for timely intervention.
Potential Causes
The causes of small fiber neuropathy are diverse and can include:
- Diabetes Mellitus: A significant number of diabetic patients develop SFN.
- Autoimmune Disorders: Conditions like Sjögren’s syndrome or celiac disease can lead to nerve damage.
- Bacterial Infections: Infections such as Lyme disease and others can harm nerves through toxins or direct invasion.
- Viral Infections: Infections like HIV and hepatitis C have been linked to SFN.[2]
- Genetic Factors: Mutations in sodium channel genes (SCN9A and SCN10A) have been implicated in some cases of SFN.
- Toxic Exposures: Certain chemotherapeutic agents and environmental toxins have also been linked to the development of this condition.
This complexity underscores the importance of comprehensive patient histories and targeted testing to identify underlying causes.
Treatment Challenges
Currently, treatment options for small fiber neuropathy are limited and often focus on symptom management rather than addressing root causes. Medications such as analgesics or antidepressants may be prescribed to alleviate pain; however, these do not address the underlying nerve damage.
Kaiser Permanente’s approach to managing SFN could benefit from a multidisciplinary strategy that includes neurologists, pain specialists, and physical therapists working collaboratively to create individualized treatment plans. This could enhance patient outcomes by addressing both symptoms and contributing factors more effectively.
Lyme Disease and Its Overlooked Impact
Lyme disease is another critical factor that can contribute to small fiber neuropathy. Caused by the bacterium *Borrelia burgdorferi*, Lyme disease is transmitted through tick bites and can lead to various neurological complications if left untreated. Spirochetes from Lyme disease can live in the myelin sheath of nerves, causing damage by excreting neurotoxins that disrupt normal nerve function.
Kaiser Permanente’s policies regarding late-stage Lyme disease have raised concerns among patients and advocates. Late-stage Lyme disease can manifest with severe neurological symptoms that overlap with those of small fiber neuropathy, including chronic pain, numbness, and cognitive difficulties. However, Kaiser’s guidelines often limit recognition of these late-stage complications unless they are accompanied by clear early symptoms or positive blood tests.
This approach has led to frustration among patients who feel their symptoms are dismissed or inadequately addressed. There is a growing call for Kaiser Permanente to reconsider its policies on Lyme disease diagnosis and treatment, particularly regarding late-stage manifestations that may not present with typical early indicators but nonetheless require urgent attention.
To be fair to Kaiser all of my Lyme tests through them have been below the threshold they have set. My latest “score” with my damaged immune system (IgG subclass deficiencies) is 0.67 and according to Kaiser Infectious Diseases, one needs to have a score of 0.94 or something to qualify for one’s symptoms of Lyme disease being attributed to Lyme disease. The test kit maker for one of the tests they use, Zeus Scientific, says it can not be used to rule out Lyme disease because some people do not make antibodies. The $1000 Igenix panel I did showed that I have two positive bands and three equivocal, but even by Igenix standards, I am not positive enough to be positive for Lyme disease. Perhaps I have a little known strain or it is hiding well in my nerves, or perhaps I have something else, but I know this much: I have multiple tick bites, one tick was on my arm for about 5 days before I discovered it, there was a red rash around it as well, and I have had years of recurring Lyme disease symptoms.
Conclusion
Small fiber nerve damage remains a significant medical mystery that challenges even well-resourced healthcare organizations like Kaiser Permanente. As research continues to evolve, there is hope that advances in understanding the pathology of SFN will lead to better diagnostic tools and treatment options. Increased awareness among healthcare providers is essential to improve early detection and management of this debilitating condition, especially when considering the potential impact of diseases like Lyme that may complicate patient presentations.