The Disappearing Pathogen Puzzle
There’s no doubt that Lyme is a serious threat. Approximately 20-30,000 people get Lyme disease from deer tick bites every year. Untreated the bacteria can cause heart, neurological problems and arthritis. Treated, the symptoms usually do disappear but not always. In some people who are treated, unfortunately the problems can continue for years.
The big question in the Lyme community is if its due to a reactivated infection or something else? Did the first round of antibiotics leave some of the bug behind or did it simply eliminate the bug a bit too late – after the damage had been done?
The consequences of that decision can be enormous. If you and your doctor believe the Lyme bacteria is still present after treatment, even if tests suggest it is not, then you may be in the store for a year or more of strong antibiotics and all that can entails. On the other hand, if you don’t believe that then you have other options ()but not a lot of them.)
Another Diagnostic Dilemma
As with other pathogens, diagnosing Lyme disease is not straight forward. A very heterogeneous bacteria means some antibody tests could miss a strain and a positive test is not necessarily indicative of an active infection. Since IgG and IgM antibodies can linger at high levels for years after successful treatment they’re not good indicators either. Positive culture and PCR tests can verify that Lyme is present but negative tests don’t rule it out.
Indeed a recent paper stated “There is currently no method available which, in addition to the serology, answers the question as to whether a specific case is a status post Borrelia infection or active borreliosis.” Determining whether an infection is still active is still, often a judgment call.
It’s another pathogen muddle….
This study should help a bit. It asked whether Lyme disease patients who’s erythum migrans rash popped up again after successful treatment had suffered a relapse or had gotten bitten by a different tick and become infected again. In all cases the genetic tests indicating that the second rash was due to a different strain of Borrelia and once they were treated with antibiotics again their symptoms and the infection disappeared again.
This suggested, contrary to received opinion in much of the Lyme disease advocacy community a) that Lyme infections are mostly effectively treated with the antibiotic protocols available and b) long term antibiotic therapy is not necessary.
This study suggests that
- If you have a Lyme rash by all means get it treated with several weeks or a month or so of antibiotics.
- If you had Lyme, been treated for it, got better and then relapsed you may very well have become re- infected. See your doctor for further tests and possibly another short-term round of treatment
- If you’ve had Lyme, been treated for it and never became well stay long term antibiotic regimes are probably not the answer. Several studies have shown that long term antibiotic treatment of Lyme disease is not more effective than placebo and, of course, caries risks of its own.
ME/CFS All Over Again?
There’s no doubt that the chronic Lyme patients are sick. If long term antibiotics aren’t the answer the question quickly becomes what tunnel they should go down next. Interestingly, the pathway may converge with another disorder with a pathogen puzzle; chronic fatigue syndrome.
Some striking similarities between the two disorders exist. Both can be triggered by infections and in their chronic state both are very difficult to treat. Both produce ‘highly varied and ambiguous’ symptoms and both, in many doctors practices, have become wastebasket disorders they plunk patients they don’t know what else to do with. From the editorial…
Moreover, chronic Lyme disease has become a common diagnosis for medically unexplained pain or neurocognitive or fatigue symptoms, even when there is little or no evidence of previous B. burgdorferi infection.
The editorial accompanying the study suggested the infection had either triggered an autoimmune response or that ‘spirochetal antigens’ remained. Pathogens can trigger autoimmune disorders and the Rituximab results suggest some people with ME/CFS could have an autoimmune disorder (or an infection).
Herpesviruses Rear Their Heads? There’s also the question of multiple undiagnosed infections. Lyme disorder patients are probably not often tested for herpesviruses (and chronic fatigue syndrome patients are probably not all that often tested for Lyme), yet Dr. Lerner has found that identifying Lyme disease when its present in ME/CFS patients with herpesvirus infections made a critical difference in his ability to treat them effectively.
Could the same be true in Lyme disease? Could the non-responsive patients have an undiagnosed herpesvirus infection? (Unfortunately the same type of diagnostic dilemma is present in herpesvirus infections).
Can we throw Borrelia burdorfii into the growing list of pathogens (EBV, parvovirus, Giardia, coxsackie, SARS) known to trigger a CFS-like state? Can we throw chronic Lyme disease (ie Lyme disease that does not resolve with antibiotics) into the post-viral subset of ME/CFS?
Lyme, ME/CFS, fibromyalgia, irritable bowel syndrome, interstitial cystitis – the list could probably go on for a while (rheumatoid arthritis) – can all be triggered by infections. The big question, of course, is how…..
We’ll keep an eye on Lyme researchers to see what they dig up.
SUPPORT HEALTH RISING
Make sure you don’t miss another one by registering for our free ME/CFS and Fibromyalgia blogs here...
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.