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Suzy Cohen, R.Ph.

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Feel Bad? It Could Be Lyme Unless Proven Otherwise

Posted: 08/28/2013 4:45 pm

Do you have symptoms that come and go? Are you on a medication merry go round? Have you been to 10 or 20 doctors without relief? Maybe you've been misdiagnosed.

Lyme disease, caused by Borrelia burgdorferi, is the No. 1 vector borne spreading epidemic worldwide. People often attribute uncomfortable symptoms to aging, stress, or the "aches and pains of daily living," especially if blood tests and body scans are normal. What if you have Lyme and don't know it?

It's not uncommon to get Lyme. If you've ever been for a walk in the woods, laid in the grass, live in or visited a Lyme-endemic area, or have a pet cat or dog, you may have exposed yourself to Lyme disease and associated co-infections. There is even the possibility of contracting Lyme if you were born to a mother who has been exposed. Tick born infections can also be transmitted from blood transfusions. This is scary, as Lyme has been found to persist in stored blood, and Ehrlichia and Babesia (two co-infections) have been reported in patients receiving blood transfusions.

Lyme Looks Like Other Diseases

Symptoms of Lyme vary, and you're more likely to express the disease if your immunity goes down and stress goes up. One clue is that discomfort plagues you! It's like a spinning dial, changing symptoms every hour, or day. You see, Lyme is a multi-systemic illness, and may affect every part of the body causing fatigue, stiff neck, headaches, light and sound sensitivity, tinnitus (ringing in the ears), anemia, dizziness, joint and muscle pain, brain fog, tingling, numbness and burning sensations of the extremities, memory and concentration problems, difficulties with sleep (both falling asleep and frequent awakening), chest pain and palpitations and/or psychiatric symptoms like depression and anxiety.

I interviewed Dr. Richard Horowitz, a board-certified internist in Hyde Park, N.Y., who has treated more than 12,000 chronically-ill patients with Lyme disease. This expert physician has noticed the trend of varying symptoms. He's dubbed it "Lyme-MSIDS," short for Multiple Systemic Infectious Disease Syndrome.

MSIDS is like Pandora's box. It involves not only the bacterial and parasitic infections mentioned above, but also associated viral and fungal infections, immune issues, inflammation, hormonal disorders, mitochondrial dysfunction (the mitochondria are the part of the cells responsible for energy production), sleep disorders, environmental toxins with heavy metals, and detoxification problems.

Dr. Horowitz's book, Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease (St. Martin's Press), presents a comprehensive diagnostic and treatment plan for those suffering from chronic, unrelenting symptoms, for those with Lyme disease, chronic fatigue syndrome, fibromyalgia or any chronic illness. I highly recommend his book, and you can buy it from Amazon.

Dr. Horowitz explained:

The majority of my patients suffer not only from Lyme disease, but a host of associated tick-borne infections, such as Borrelia hermsii (relapsing fever), Babesia, Bartonella, Mycoplasma, Chlamydia, Rocky mountain spotted fever, Q-fever, Ehrlichia or Anaplasma. Rarely, I see a patient presenting with Tularemia and Brucellosis. To see Borrelia burgdorferi by itself is unusual.

This collection of bugs and associated illness explains why the standard treatment protocol (consisting of 30 days antibiotic therapy) doesn't offer the cure for most sufferers. You can't just blow up bugs. Detoxification, hormone balancing, heavy metal removal and ramping up immune function are equally important.

Your Symptoms Are Real Even If Your Doctor Can't See Them

So if ticks are dumping their garbage into our bloodstream, causing various symptoms and organ damage, imagine how difficult it might be to get accurate diagnosis. Go to your physician, and you'll likely be diagnosed with depression, chronic fatigue syndrome (CFS or Myalgic Encephalomyelitis), fibromyalgia, an autoimmune disease such as rheumatoid arthritis or multiple sclerosis, ALS, Parkinson's disease or others. Worst of all, you could be told it's all in your head. In one sense that's true, Lyme definitely penetrates brain tissue! The consequences of misdiagnosis are lifelong because you will end up buying prescription drugs and supplements for a disease you don't have, and you'll probably never find complete relief. My article will inform and stun you all at once, "Long History of Pain? Think Chronic Lyme."

Conventional blood tests from regular labs are highly unreliable for Lyme. So are blood tests associated with other tick-borne infections such as Bartonella (cat scratch disease) and Babesiosis (a malarial type illness that causes day sweats, night sweats, chills, air hunger and an unexplained cough). How can you figure this out if blood tests are iffy?

To Me, It's Lyme Until Proven Otherwise

Suspect Lyme disease (and associated co-infections) if you have symptoms that come and go, causing good and bad days; the joint pain and muscle pain often migrates around your body, as does the tingling, numbness and burning sensations (Lyme neuropathy). Women often complain of a worsening of symptoms around their cycle (either right before, during, or after the menstrual cycle, it differs). Symptoms could worsen on antibiotics, if you get a Herxheimer die-off reaction. Sometimes symptoms abate with antibiotic treatment because you're reducing microbial load.

Lyme is a clinical diagnosis, and confirming the diagnosis of Borrelia burgdorferi (the causative agent of Lyme disease) through a reliable lab is important. I recommend IgeneX laboratory in California, because they specialize in tick-borne testing, and can detect at least two common strains of the organism.

If you insist on using a local laboratory, ask your doctor to order an IgM and IgG Western Blot for Lyme disease. An ELISA or C6 Lyme Elisa peptide can be ordered, but those test(s) may still miss 50 percent or more cases. Don't completely rely on them.

If you get a positive IgM (with chronic symptoms) you may be told it's a false positive. I disagree. Doctors and practitioners like myself who belong to the International Lyme and Associated Diseases Society (ILADS) see patients with positive IgM antibodies in chronic Lyme all the time, and the medical literature has confirmed that this is possible. A positive IgM antibody means that you have definitely been exposed and should be treated appropriately, especially if other diagnoses for your symptoms have been ruled out. 

How else can you know that you have been exposed to Lyme?

Your Western blot blood test should check for specific bands on the Western Blot (outer surface proteins of the bacteria) that are indicative of exposure to Borrelia. These include the 23 kdA, 31 kdA, 34 kdA, 39 kdA, and the 83/93 kdA bands. 

Assuming you have the above classic multi systemic symptoms, and your Western Blot is positive for any of the above bands (without having received LymeriX vaccine), I'd suspect Lyme.

Most physicians agree that tick bites can transmit Lyme but many dismiss you unless a bullseye rash occurs at the site of the bite. But how silly (and potentially deadly) since only 50 percent of people ever get that rash and most people never even see a tick! They are tiny, but their health consequences are massive!
 
It's awful that there is such a stealth group of organisms, hard to detect, almost impossible to eradicate, and it mimics hundreds of diseases causing untold suffering every day in countries across the globe. Unreal. If you think you have Lyme disease, please find a doctor well versed in diagnosing and treating tick-borne diseases such as those who belong to ILADS. Get yourself treated properly as fast as you can because the longer you wait, the more symptoms occur. One more thing: Pets have the ability to infect you indirectly, so read "Can Your Pet Cause Illness?"

References:

Fallon, B., et al., Psychiatric manifestations of Lyme borreliosis, Jour of Clin Psychiatry 1993;54(7):263-68.

Fallon, B., et al., Late-stage neuropsychiatric Lyme borreliosis. Differential diagnosis and treatment, Psychosomatics 1995;36(3):295-300.

Georglis, K., et al., Fibroblasts protect the Lyme disease spirochete, Borrelia burgdorferi, from ceftriaxone in vitro, Jour of Infectious Diseases 1992;166(2):440-44.

Girschick, H. et al., Intracellular persistance of Borrelia burgdorferi in human synovial cells, Rheumatology International 1996;16(3):125-32.

Halperin, J., et al., Lyme disease cause of a treatable peripheral neuropathy," Neurology 1987; 37(11):1700-06

Hammond, R., et al., Alzheimer's disease and spirochetes; a questionable relationship, Neuroreport 1993;4(7):840.

Hess, Al, et al., Borrelia burgdorferi central nervous system infection presenting as an organic schizophrenia-like disorder, Biological Psychiatry 1999;45(6):795.

Horowitz, Richard, Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease, St. Martin's Press, October 2013.

Kohler, J., Lyme borreliosis in neurology and psychiatry, Fortschrift Med 1990;108(10):191-93, 97.

Legigian, E., Peripheral nervous system Lyme borreliosis, Seminars in Neurology 1997; March, 25-9.

Miklossy, J., Alzheimer's disease, a spirochetosis?, Neuroreport 1993;4(9):1069.

Pachner, A., et al., The triad of neurologic manifestations of Lyme disease: meningitis, cranial neuritis, and radioculoneuritis, Neurology 1985;35(1):47-53.

Pachner, A., Neurologic manifestations of Lyme disease, the new 'great imitator,' Review of Infectious Diseases 1989;11(Suppl 6):S1482-26.

Pachner, A., et al., Central nervous system manifestations of Lyme disease, Archives of Neurology 1989;46(7):790-95.

Pfister, H., et al., Catatonic syndrome in acute severe encephalitis due to Borrelia burgdorferi infection, Neurology 1993;43(2):433-35.

Preac-Mursic, V., et al, Survival of B. burgdorferi antibiotically treated patients with Lyme borreliosis, Infection 1989;17:355.

Reik, L, et al., Demyelinating encephalopathy in Lyme disease, Neurology 1985; 35(2):267-69.

Reik, L., et al, Neurologic abnormalities of Lyme disease, Medicine 1979;58:281-94.
Ross, Marty & Brook, Tara., Supplements and Advanced Treatments for Lyme and Associated Diseases. www.TreatLyme.net

Steere, A., et al., Lyme arthritis: A new clinical entity, Hospital Practice 1978;13(4):143-58.

Stein, S., et al., A 25-year-old woman with hallucinations, hypersexuality, nightmares, and a rash, Amer J of Psychiatry, 1996;153(4):545-51.

Waisbren, B., et al., Borrelia burgdorferi antibodies and amyotrophic lateral sclerosis, Lancet 1987;2(8554):332-33.

Zhang, J., et al., Antigenic variation in Lyme disease Borreliae by promiscuous recombination of VMP-like sequence cassettes, Cell 1997;89(2):275-85.

http://www.ilads.org

http://www.igenex.com/Website/#

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

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