Recently a friend emailed me the website for Dr. Charles Crist (pictured) that contains a wonderfully concise description of the outstanding symptoms of Lyme.
This is important for several reasons. As the number of Lyme victims rise, the discussion and medical debate becomes louder and filters into hundreds of thousands of living rooms leaving fear and questions behind. Also, due to the complexity of Lyme disease, it is easy for skeptics to roll their eyes and mentally throw the baby out with the bathwater. As this terrifying epidemic continues to spread, we need to be able to fight for our medical rights and insist on the care we need, as well as discuss the disease in a rational manner.
Lyme disease can and will mimic any disease or illness. Most doctors will look for the more accepted explanation of our symptoms; fibromyalgia, MS, ALS, depression, arthritis, neuropathy…rather than risk stepping out of the mainstream (and the censure of their peers) by looking for Lyme. We need to insist. Knowledge is power, and we don’t need to understand the details of the medical terminology (and with Lyme fog that may be impossible anyways.) We just need to understand enough to ensure that our doctors are giving us the correct diagnostic tests, and not ignoring what could be vital diagnostic information.
Another confusing and often insurmountable problem – even for those doctors who are willing to to consider Lyme, is that the longer we have had it, the deeper it has drilled into our brain, ligaments, joints and soft tissue where blood flow is not as strong, and due to the intelligence of the Lyme bacteria, our body begins to accept the invaders and creates fewer and fewer antibodies – which is how they test for Lyme with the western blot – looking for antibodies that are created by our immune system when it senses a Lyme invasion.
This is why after years of suffering, when my body finally collapsed and I could no longer walk or tolerate sound or light of any kind (in addition to many, many other Lyme symptoms) my Igenex western blot was considered negative by the CDC while my husband who took the test only at my insistence had a clearly positive western blot according to the CDC although he had very few symptoms.
For a much more complete symptom list I offer an ebook called “Could I Have Lyme Disease?”AÂ along with many other ebooks at http://lymediseaseresource.com/Free_Ebooks.html.
Back to Dr. Crist in Columbus, Missouri. Following is what he has written about chronic Lyme disease that I feel is very valuable for everyone, but especially anyone who is interested in understanding why this disease is becoming such a hotly debated issue.
In many ways, borreliosis is like syphilis. Both of the germs that cause syphilis and borreliosis are called spirochetes (spiral-shaped bacteria). Before penicillin was discovered, doctors called syphilis a “great imitator”AÂ because syphilis can imitate or mimic virtually any disease. Likewise, borreliosis often mimics other diseases. Borreliosis can cause any symptom and any disease. People who have not been healthy need to consider this infection as a possibility if they are trying to find the cause of their medical problems.
When the initial bacterial infection occurs after a tick bite, people may develop a rash and experience a flu-like illness. Often the rash is a red ring resembling a bulls-eye, but occasionally the rash may be red all the way across. The key is whether the rash enlarges or gets bigger, not if it is a red ring or solid red. The proper name of the borreliosis rash is erythema migrans, erythema meaning red and migrans meaning the rash migrates or enlarges. In my opinion, a tick bite followed by a rash that enlarges and/or a flu-like illness is borreliosis until proven otherwise.
Borreliosis patients with a chronic infection most commonly have pain, tiredness, brain or thinking problems, blurry vision and neurological (nerve) problems. Remember, the borreliosis bacteria may cause virtually any symptom or disease. In addition to other symptoms, borreliosis patients usually also have hypercoagulation (thrombophilia), endocrinopathies (hormone deficiencies), toxic metal elevations, deficiencies of essential amino acids and essential fatty acids, and also vitamin and mineral deficiencies. Borreliosis patients are usually low in iodine, have allergies, dead infected bone (osteonecrosis) in the jaw, have neurotransmitter deficiencies, and may have chenical sensitivities. (These topics are addressed in other sections of this website.)
Pain is far and away the number one problem for those with borreliosis. Not all patients have pain, but most do. Any part of the body can hurt, including the head, neck, eyes, ears, jaw, arms, hands, chest, abdomen, back, legs, feet, muscles and joints. This pain is sometimes worse than pain caused by surgery! Morphine may not help.
Tiredness or fatigue is the second most common symptom of borreliosis. If you divided the pain symptoms into specific categories such as headache or joint pain, then fatigue would become the number one symptom. This tiredness has often been misdiagnosed as chronic fatigue syndrome. It can be so severe that the fatigue is described as complete exhaustion. Many are so tired that they lose their jobs and cannot help at home. They may also attempt a minor physical activity like walking to the mailbox or taking out the trash and become so tired that they have to go to bed.
The third most common symptom is brain or cognitive problems. Common symptoms or diseases include memory loss, decreased mental concentration, mood swings, irritability, depression, anxiety, panic disorder, manic-depressive illness (bipolar), obsessive-compulsive disorder (OCD), paranoia, schizophrenia, and “brain fog”.
Blurry vision is the fourth most common symptom in borreliosis, but that is with combining all of the various pains together and all of the brain or thinking problems together. The bacteria can inflame any part of the eye (causing conjunctivitis, iritis, uveitis, retinitis and optic neuritis), so having blurry vision as a common symptom is not surprising.
Finally, there are the neurological symptoms. Neurological borreliosis is also known as neuroborreliosis. Patients may experience numbness, tingling, burning, twitching, jerking, and muscle weakness. In addition, they may have seizures, and multiple sclerosis, Parkinsons, amyotrophic lateral sclerosis (ALS or Lou Gehrig disease) encephalitis, meningitis, stroke and dementia. As one neurologist who specializes in borreliosis put it, “The chapter on neurological Lyme disease is still being written.” As I stated earlier, borreliosis is like syphilis and may imitate or mimic any disease, including neurological disorders.
In addition to the above symptoms, there are “red flags” that I highly associate with borreliosis. These include memory loss, twitching around the eyes, Bell’s palsy (in which half of the face droops), tinnitus (which is ringing or buzzing in the ears), symptoms that affect one side of the body more than the other, symptoms that are worse when a patient first gets out of bed or that are worse in the winter, when patients use words like “strange” or “weird” in describing their illness, and finally, when patients have been to a good doctor (or many doctors) and yet the cause of the symptoms or disease is still unknown.
Borreliosis patients are often misdiagnosed as being hypochondriacs. They are told that they are just getting older, or that they are lazy, crazy or simply overstressed. They are often referred for counseling when actually what they really need are antibiotics. Because the symptoms can be so varied and are often so vague, borreliosis is typically not even considered for testing or treatment.
The responsibility must be with us to insist that Lyme be considered, and if our doctor is unwilling to consider this possibility then it is critical we find a doctor who has experience diagnosing and treating Lyme. Unfortunately, the longer we have it, the longer it takes to get rid of.
The good news is that a new infection of Lyme is easily spotted and easily treated. Again, the responsibility is ours. Dr. Crist can be found at http://www.drcharlescrist.com/index.htm.