Sunday, November 27, 2022

I Have Ms And Lyme Disease

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What Blacklegged Ticks Look Like

Think the Lyme Disease Rash is Always a Bull’s-eye? Think Again! | Johns Hopkins Rheumatology

Blacklegged ticks are small and hard to see. They attach themselves to humans and animals and feed on their blood. They can range in size depending on how long they have been feeding.

You can find out if its a blacklegged tick by:

Adult female blacklegged tick at various stages of feeding. Photo: Government of Canada

Do Antibiotics Help Patients With Lyme Disease Who Are Also Diagnosed With Ms

Periodically, I post information about some of the findings from our big data project, MyLymeData. We call these Quick Bytes. In April, my Quick Byte on neurologic Lyme disease focused on how often Lyme patients are misdiagnosed with a neurologic condition including MS . The blog included a brief survey for those whose neurologic Lyme had been misdiagnosed. The survey asked about any antibiotic treatment they may have received. I report on the results of that survey here today.

Our MyLymeData registry asks patients if they were initially misdiagnosed with another illness, and if so, what the illness was. About 20% of respondents were told they had a neurological disease. 14% were misdiagnosed with MS, and 2% with other neurological diseases like ALS, Parkinsons and multiple system atrophy. When looking at this data, it is important to recognize that geography may play a big role in both the prevalence of neurologic conditions and Lyme disease in a particular area.

In my previous blog, I pointed out the dangers of misdiagnosis, particularly when patients are given steroids or other immune suppressants that may allow the infection to run rampant. I also pointed out that patients with Lyme disease can become terribly ill on steroids. These are the points to bear in mind:

  • Neurologic diseases, including MS, are progressive and uncurable.
  • Delays in diagnosis may permit irreversible neurologic damage to occur.
  • Vitamin B12 Deficiency Or Copper Deficiency

    A vitamin B12 deficiency can cause MS-like symptoms, says Conway. These symptoms can include fatigue, mental confusion, and numbness and tingling in the hands and feet. That’s because vitamin B12 plays a role in the metabolism of fatty acids needed to maintain the myelin sheath. Vitamin B12 deficiency can be identified with a simple blood test.

    A deficiency of the mineral copper can also cause symptoms similar to those of a vitamin B12 deficiency.

    Recommended Reading: Unusual Symptoms Of Lyme Disease

    Persistent Symptoms After Treatment For Lyme Disease

    It is well-recognized that some patients experience prolonged symptoms during convalescence from Lyme disease, and a subset suffer significant functional impairment., The most common complaints among such patients are arthralgias, myalgias, headache, neck and backache, fatigue, irritability, and cognitive dysfunction .

    A working definition was developed to categorize patients with post-Lyme disease symptoms , those patients with persistent clinical symptoms after treatment for Lyme disease, but who lack objective evidence of treatment failure, reinfection, or relapse . PLDS is not strictly speaking a coherent clinical diagnosis its primary value has been to define a patient cohort for further study. Nonetheless, it is worth considering how it conceptually differs from CLD. To meet criteria for PLDS, patients must have unequivocal documentation of appropriately treated Lyme disease, lack objective manifestations of Lyme disease, and have persistent symptoms that cannot be explained by other medical illnesses. Thus, of patients with chronic symptoms that have been attributed to Lyme disease, those meeting criteria for PLDS are those for whom infection with B burgdorferi is most plausible. This makes the studies of PLDS paradigmatic for the understanding of CLD.

    Neuromyelitis Optica Spectrum Disorder

    The Lyme Post: I Remember

    NMOSD is an inflammatory disease that, like multiple sclerosis, attacks the myelin sheaths the protective covering of the nerve fibers of the optic nerves and spinal cord, says Conway. But unlike MS, it usually spares the brain in its early stages.

    Symptoms of NMOSD can be similar to MS but can also include sudden vision loss or pain in one or both eyes, numbness or loss of sensation in the arms and legs, difficulty controlling the bladder and bowels, and uncontrollable vomiting and hiccups, according to Oregon Health and Sciences University.

    Treatments for MS are ineffective for and can even worsen NMOSD, so getting an accurate diagnosis is extremely important. A blood test known as the NMO IgG antibody test can help to differentiate between MS and NMOSD.

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    Biological Explanations For Chronic Lyme Disease

    Several arguments have been made to support the biological plausibility of CLD and to justify its treatment with lengthy courses of antibiotics. One is that B burgdorferilocalizes intracellularly in the infected host, and that the antibiotics typically chosen to treat it do not penetrate cells effectively. Aside from the fact that B burgdorferi predominantly occupies the extracellular matrix, the antibiotics currently recommended to treat Lyme disease are well-established to treat a variety of intracellular infections. For example, doxycycline and azithromycin are first-line drugs for the treatment of Mycoplasma, Chlamydia, and Legionella, and doxycycline is the drug of choice for Rickettsia and related species. Ceftriaxone is effective against Salmonella and Neisseria, both of which are predominantly intracellular amoxicillin is effective against Listeria.

    Another commonly voiced argument is that B burgdorferi assumes a round morphology, variously described as cyst forms,spheroplasts,L-forms, and round bodies. These variants are said to be resistant to antibiotic treatment and require alternative antibiotics and dosing strategies. On close review of the literature there is little evidence that these variants arise in vivo in humans, let alone that they are associated with CLD-like symptom complexes or that they require treatment.

    Recommended Reading: Do Ticks In Florida Carry Lyme Disease

    Differences In Treatment Goals

    Options for MS treatment vary and are designed to manage symptoms and prevent relapse. Use of prescription medications, corticosteroids, and plasma exchange help keep the disease in check. Physical therapy, muscle relaxants, and other drugs are used to reduce fatigue, depression, sexual and bladder problems, and other miscellaneous symptoms. MS is a chronic, generally progressive, lifelong condition that can range mild to severe, whereas Lyme disease can be treated and usually cured.

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    Touched By Lyme: Strong Connection Between Lyme Disease And Ms

    TV and film actress Selma Blair created a stir this past weekend, when she announced on Instagram that she has been diagnosed with multiple sclerosis

    The Cruel Intentions actress, who is currently filming a project for Netflix, posted that she was diagnosed in August. She further stated:

    I am disabled. I fall sometimes. I drop things, she posted. My memory is foggy. And my left side is asking for directions from a broken gps. But we are doing it. And I laugh and I dont know exactly what I will do precisely but I will do my best.

    Alas, when somebody makes this kind of announcement, the first thing that pops into the heads of people in the Lyme community is What if its actually Lyme disease?

    Im not saying that every case of MS is caused by Lyme disease. But its very common for people who actually have Lyme disease to be misdiagnosed with MS. In fact, according to MyLymeData, 14% of chronic Lyme patients in the study said they had initially been misdiagnosed with MS.

    And unfortunately, MS treatment typically involves immunosuppressionexactly what you dont want with a bacterial infection like Lyme disease.

    Dr. Steve Phillips speaks on the connection between Lyme and MS in a video he and Dana Parish have posted on Facebook.

    Read more about the connection between Lyme disease and MS:

    Is Multiple Sclerosis A Symptom Of Lyme Disease

    Getting An MS Diagnosis In Your 20s | Elite Daily

    . and why is there no current ongoing aggressive human pathology being done in Canada specific to looking for Lyme in patients diagnosed with MS considering that Canada has some of the highest per capita rates of MS in the world?

    Lyme on the Brain Lecture Notes of Tom Grier

    MS and SpirochetesIn every Lyme disease support group in this country , there have always been at least one multiple sclerosis, MS, patient who turned out to have Lyme disease, and was recovering on antibiotics. But if this is true why is there is no documented connection between spirochetes and M.S.? As it turns out there are more than 50 such MS-spirochete references prior to World War II and going back to as far as 1911, and published in such prestigious journals as the Lancet.

    1911 Buzzard Spirochetes in MS Lancet

    1913 Bullock MS Agent in Rabbits Lancet

    1917 Steiner Spirochetes The Cause of MS Med Kiln

    1918 Simmering Spirochetes in MS by Darkfield Micro

    1918 Steiner G. Guinea Pig Inoculation with MS infectious agent from Human

    1919 Steiner MS Agent Inoculation into Monkeys

    1921 Gye F. MS Agent In Rabbits Brain 14:213

    1922 Kaberlah MS Agent In Rabbits Deutch Med Works

    1922 Sicard MS Spirochetes in Animal Model Rev Neurol

    1922 Stepanopoulo Spirochetes in the CSF of MS Patients

    1923 Shhlossman MS Agent in Animal Model Rev Neuro

    1924 Blacklock MS Agent in Animals J. of Path and Bac

    1927 Wilson The Rat as A Carrier of MS British Med Journal

    1927 Steiner G Understanding the Pathogenesis of MS

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    Lyme Disease And Ms Symptoms: Understanding The Difference

    | | | |

    Lyme disease is a tick-borne illness that can affect multiple organs and body systems. In some cases, Lyme disease impacts the central nervous system in whats known as neurologic Lyme disease . Neurologic Lyme disease can cause symptoms closely resembling those of multiple sclerosis .

    The similarity in these symptoms leads some people with MS to wonder whether they have Lyme disease as well. Some seek testing for the presence of antibodies against the Lyme infection to determine whats causing their symptoms.

    There are several key differences between Lyme disease and MS. If you suspect you have either condition, it is important that you seek prompt medical attention and diagnosis. Treating Lyme disease with antibiotics as early as possible can help prevent the illness from progressing.

    What Does The Research Tell Us

    There is an obvious overlap in symptoms with both MS and Lyme disease. The MS-Lyme disease connection has been studied as far back as 1911. In 1957 Time Magazine published a story on a Philadelphia-based bacteriologist who reported success in cultivating an obscure microbe, a spirochete, which she found in the spinal fluid of MS victims. She believed multiple sclerosis could be caused by the spirochete and early treatment could lead to cure or alleviation. Make sure to check our big article What Causes Multiple Sclerosis ?.

    In the documentary Under Our Skin Dr. Klinghardt states, We never hadin the last five years a single MS patientwho did not test positive for Borrelia burgdorferi. Not a single one.

    Please watch the video I created below for a closer look at the infections involved with Lyme disease, and how theyre related to multiple sclerosis. And please share with anyone who could benefit from this information!

    Recommended Reading: Cvs Minute Clinic Lyme Disease Test

    Low Seroprevalence Of Lyme Disease Among Multiple Sclerosis Patients In New Brunswick

    Published online by Cambridge University Press: 29 June 2020

    Gregg MacLean
    Affiliation:Department of Medicine, Horizon Health, Saint John, New Brunswick, CanadaDepartment of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada
    Peggy Cook
    Department of Medicine, Horizon Health, Saint John, New Brunswick, Canada
    L. Robbin Lindsay
    Affiliation:Zoonotic Diseases and Special Pathogens Division, National Microbiology Laboratory , Public Health Agency of Canada , Winnipeg, Manitoba, Canada
    Todd F. Hatchette
    Affiliation:Department of Medicine, Dalhousie University, Halifax, Nova Scotia, CanadaDepartment of Pathology and Laboratory Medicine, Nova Scotia Health Authority , Halifax, Nova Scotia, Canada
    Duncan Webster*
    Affiliation:Department of Medicine, Horizon Health, Saint John, New Brunswick, CanadaDepartment of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada
    *
    Correspondence to: Duncan Webster, MA, MD, FRCPC, Division of Infectious Disease, Department of Medicine, Saint John Regional Hospital, Saint John, New Brunswick, CanadaE2L 4L2. Email:

    Lyme Disease And Ms Are Often Confused

    Emerging Tickborne Illnesses: Beyond Lyme Disease

    The symptoms of Lyme disease and MS can be similar. Doctors may confuse one with the other. To diagnose these conditions, your doctor will need to conduct blood and other tests. If your doctor suspects you have MS, you may need:

    Its unlikely that you have both Lyme disease and MS, but its possible. Some of Lyme diseases symptoms can mimic those of MS. It can also follow a relapse-remittance course, where symptoms come and go.

    If your history and medical results suggest either condition, your doctor may decide to try antibiotic therapy to see if theres an improvement in your symptoms. Once they fully determine your condition, youll begin a treatment and management plan.

    If you have Lyme disease or MS, its important to seek medical advice right away. Despite the different outlooks for Lyme and MS, early diagnosis and treatment for either condition is imperative to your overall health.

    Also Check: Doctors Who Treat Chronic Lyme Disease

    Structural Damage In The Brain Or Spinal Cord

    Herniated spinal discs, where a collapsed disc can put pressure on a nerve root and cause neurologic symptoms cervical spondylosis, aka degenerative spine disease that can cause neurologic symptoms when pressed on the spinal cord Chiaris malformation, an abnormality of the formation of the cerebellum where it sits too low and puts pressure on the brainstem or spinal cord, causing neurologic symptoms.

    Do I Need To See An Infectious Disease Specialist To Get Tested For Lyme Disease

    No, you do not need to see an infectious disease specialist.

    As noted above, any type of physician should be able to order the correct diagnostic tests, interpret your test results, and provide antibiotics to treat Lyme disease. This is especially true the earlier the disease is caught.

    In fact, American Lyme Disease Foundation points out that waiting for an appointment with an infectious disease or other type of specialist can actually delay your diagnosis and treatment. If you were bitten by a tick, notice symptoms of Lyme disease, or believe youre at risk for Lyme or another tick-borne disease, its important that you make an appointment with a doctor immediately even if its your primary care physician.

    That said, there are plenty of reasons why you may want to consult with, or get a second opinion from, someone with specific experience with Lyme disease. In other words, you may want to make an appointment with a Lyme-literate doctor . Read on to learn more.

    Read Also: Antibiotics To Prevent Lyme Disease

    Lyme Disease And Multiple Sclerosis

    In a recent MS article, a neurologist looked at 100 MS patents and tested their blood for Lyme antibodies using very basic testing. Her general study idea was quite smart, based on what we know of both illnesses. For example, the excellent book by Dr. Reik, Lyme Disease and the Central Nervous System, shows that both diseases can have an overlap of symptoms, including findings on brain CTs and MRIs which show injury to nerve tissue.

    In this article by this sincere neurologist, she said only one had one possible positive lab finding.

    Why do I feel this notion of trusting routine Lyme labs is a disaster? While MS certainly exists, the reliance on junk labs performed at massive testing centers is very worrisome, since I have seen many relatives, friends and patients come up negative on these labs repeatedly while having certain Lyme symptoms. Sometimes on the 5th to 10th try they suddenly become positive. Or they were referred to IgeneX and they were positive by the Jones criteria . These missed patients were treated with antibiotics and other anti-spirochete Lyme treatment and they improved. So just keep in mind, the treatment for MS is actually very different than Lyme treatment, and might make the spirochete able to advance in the body.

    So can we agree with our sincere colleague about her 1/100? Until I have testing done at labs that specialize only in tick disease, I would be careful about rushing to a final diagnosis.

    Where Blacklegged Ticks Live

    What is MS? – National MS Society

    We continue to track where infected and uninfected blacklegged ticks are being found.

    Public Health Ontarios Lyme disease page has a map that shows areas in Ontario where they estimate you are more likely to find blacklegged ticks.

    Blacklegged ticks are spreading to new areas of the province because of climate change. They can also spread by traveling on birds and deer. While the probability is low, it is possible to find an infected tick almost anywhere in Ontario.

    Ticks are most active in spring and summer, but can be found at any time of the year when the temperature is above freezing.

    Also Check: How Do I Know If My Dog Has Lyme Disease

    Diagnostic Blood Tests Can Cause Confusion

    Diagnostic blood tests, recommended by the Centers for Disease Control , are analyzed for B. burgdorferi-specific antibodies, commonly thought of as the most important tool for the diagnosis of Lyme exposure. The test can, therefore, come back with negative results if the tick bite was less than a month before because it can take weeks for the body to develop an immune response which would produce positive test results. A clearer path to Lyme diagnosis occurs when there is a classic bulls-eye rash, but the rash doesnt develop or is not visible in all cases.2,3 The most common route when neither MS nor Lyme can be definitively diagnosed is to closely monitor the patient over time to see if there is progression or difference in test results.

    The Chronic Lyme Disease Controversy

    Chronic Lyme disease is a poorly defined term that describes the attribution of various atypical syndromes to protracted Borrelia burgdorferi infection. These syndromes are atypical for Lyme disease in their lack of the objective clinical abnormalities that are well-recognized in Lyme disease and, in many cases, the absence of serologic evidence of Lyme disease as well as the absence of plausible exposure to the infection. The syndromes usually diagnosed as CLD include chronic pain, fatigue, neurocognitive, and behavioral symptoms, as well as various alternative medical diagnosesmost commonly neurologic and rheumatologic diseases. Perhaps the most recognized and contentious facet of this debate is whether it is effective, appropriate, or even acceptable to treat patients with protracted antibiotic courses based on a clinical diagnosis of CLD.

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