Lyme Handbook

Excerpted from CANLYME.COM

Dr Sam Donta presented a comprehensive, compassionate, cutting-edge lecture to Mass. CFIDS/FM Association members on November 3^rd, 2002.  His topic was “The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues.”

Dr. Donta presented the symptom lists for chronic Lyme disease, chronic fatigue syndrome (CFS), fibromyalgia (FM), and Gulf War Illness (GWI).  He pointed out the similarities between them, and found there were few differences.  He has treated hundreds of patients with these illnesses.  He found that CFS and GWI have identical symptoms, and FM is only distinguished by a positive tender point exam, that is often positive in CFS and GWI as well.  Clinically it is almost impossible to distinguish or differentiate these illnesses.

He has concluded that chronic Lyme disease is remarkably similar to CFS, FM, and GWI.  These multi-symptom disorders have similar symptom patterns consisting of fatigue and neurocognitive dysfunction, along with numerous other symptoms that probably relate to altered neurological function.  Musculoskeletal symptoms may be more frequent in FM and in some patients with chronic Lyme than in CFS, but the definition of CFS and GWI also includes muscle aches (myalgias) and joint aches (arthralgias).
Lyme Disease: A distinct difference between Lyme disease, CFS and FM is that the origin of Lyme is clear.  Lyme disease is caused by spirochetal bacteria transmitted by the bite of an infected deer tick.  This bacteria is the Borrelia burgdorferi bacteria.  It was identified in the late 1900s in Europe.  The US was late to recognize what Europe had described.  Lyme disease was not formally identified by the CDC until 1977 when arthritis was observed in a cluster of children in and around Lyme, CT.  Since that time Lyme disease has been identified in many states.  The CDC reports that it causes more than 16,000 infections per year in the US.  Some researchers feel that the prevalence is higher than that.

CFS and FM: Dr. Donta feels that Lyme disease is an important cause of CFS and FM.  In addition to Lyme, there are a number of other possible causes.  The evidence is still circumstantial though.  Epstein-Barr virus (EBV), the major cause of infectious mononucleosis, continues to be debated as a cause of CFS.  It is uncertain whether EBV can cause symptoms other than fatigue, such as myalgias and arthralgias that are not seen during acute or reactivated EBV infection in patients who are being immunosuppressed, but it remains possible that EBV could cause one type of chronic fatigue disorder.  There are also other herpes viruses i.e. HHV6 that are being evaluated as potential culprits.

Dr. Donta reported that in Lyme disease, the nervous system seems to be the primary target for the bacteria causing the disease.  Patients with Lyme disease express many neurologic symptoms such as pain, paresthesias including numbness, tingling, crawling and itching sensations, as well as cognitive difficulties and mood changes.  Even the joint pains and occasional arthritis appear to be neuropathic in origin, as anti-inflammatory agents such as ibuprofen and other nonsteroidal anti-inflammatory drugs (NSAID) have little if any effect on the pain.  Experimental evidence from animal models also affirm the localization of B. burgdorferi DNA to the nervous system.  Dr. Donta postulates that the disease mechanisms could involve inflammatory responses, autoimmune responses or toxin-associated disruption of neural function.  Any inflammatory responses appear to be weak, and there is no compelling evidence that Lyme disease is a result of immunopathologic mechanisms.

Commenting on his research, Dr. Donta speculated that if they are correct, and lyme bacteria is a nerve toxin that interferes with the transmission of the nerve impulse, then that is all you need to impede the normal flow of information.  There is a lot of cross-talk in the nervous system.  This toxin will decrease that cross-talk causing delayed responses resulting in cognitive problems– the brain fog so commonly described in all these multi-symptom disorders.

Dr. Donta emphasized that the most important aspect of treatment is that it must be long-term— 12-18 months, sometimes 24-36 months.  This length is not unusual in the treatment of infectious diseases i.e. TB.  In the first few months of treatment patients can expect an adverse reaction, symptoms will increase and you’ll feel worse.  You need to be able to hang in through this period, and allow 3-6 months of a treatment trial to determine if it is working.  The earlier in the disease process that you start on treatment, the more successful it is.  The more chronic the condition the less successful it is, and you’ll need to treat over a longer period of time.  This treatment resulted in substantial improvement and cures in 80-90% of patients with chronic Lyme disease.  There are 10-20% who do not respond– generally those with a strongly positive Lyme test.

More at: http://www.canlyme.com/fibrocfslyme.html