We are no closer to any acceptance by the medical community of the existence of chronic Lyme disease. Patients and their physicians alike are dismissed.
Lyme is difficult to treat. IV antibiotics are frequently required. In my experience, the disease is frequently under-treated. Excessive concerns about severe Herxheimer reactions are frequently associated with inadequate therapy.
The goal of therapy is clinical remission. The persistence of the organism in cells makes it virtually impossible to eradicate. Despite this, some patients may experience a sustained remission off antibiotics. Other patients may have a remission maintained with low doses of antibiotics.
We still know very little about the disease. I would be concerned about claims that a physician is a "Lyme expert." No such experts exist at this time. The term LLMD has no specific meaning.
Patients frequently harbor a parasite that may or may not be a species of Babesia. The existence of this parasite may be impossible to prove based on current diagnostic standards. Treatment of this entity is critical for recovery of many- not all patients.
Ehrlichia is a fairly common co-infection. It resides in white blood cells. It too can be somewhat difficult to treat, but it usually responds to antibiotics well.
Bartonella appears to be a rare coinfection based on objective measurements. The optimal treatment for this bacteria is a matter of debate.
Bartonella like organism- "BLO" does not exist.(My opinion)
There are major, yet unidentified, co-infections- at least one of which is very difficult to treat. This is the small, highly motile, gram negative bacteria seen in the blood of most Lyme patients. This bacteria is highly resistant to most antibiotics. At this time it is not clear how to treat it. An unidentified small protozoan has also been seen in the blood of Lyme patients. This too is unidentified, but may account for some the clinical responses seen with Flagyl and anti-malaria drugs.
Rickettsia species may be frequently transmitted as a co-infection, but are probably eliminated with anti-Lyme therapy. Atypical Rickettsia have been identified in 20% of Ixodes ticks.
Mycoplasma species and Chlamydia pneumonia are frequently present in Lyme patients. They are intracellular and are also difficult to eliminate. Their role in the pathogenesis of the syndrome is not well known.
Standard allopathic treatments are very effective. I believe the role of CAM in managing this disease has been over emphasized in most quarters.
Therapy must be individualized. It remains difficult to predict how individual patients will respond to any given regimen.
Chronic Lyme disease is associated with objective measurements and findings.
The role of vitamin D remains unanswered. For now, I see it as a marker which relates to an immunological response to infection.
CD57 counts appear to be of little clinical benefit.
Many, if not most of the symptoms associated with chronic Lyme disease, reflect the bodies immunological reactions to infection, rather than infection per say. Auto-immune responses play a large role in the pathogenesis of the disease syndrome.
Proven antibiotics (classes) include: beta-lactams. macrolides, quinolones, rifampin, Flagyl/Tindamax, anti-malarials- Plaquenil, Malarone, Mepron, clindamycin- related to macrolides, tetracycalines and artemesin. I see no significant role for sulfa drugs like Bactrim.
Complementary medicines which appear helpful include: Bile binders- Welchol and Questran. I remain unconvinced about any others. I am cautious about recommending things which have no proven clinical benefits.
Information about Lyme and tick borne illness remains very confusing and contradictory. Lyme patients need to become well informed about their illness so that they can partner with their physician. Patients must also be informed so that can decide whether or not a physician's approach makes sense to them.
Patients and doctors should not be wed to a particular paradigm. If a therapy isn't working then something else should be tried.
I do not believe it is ethical for physicians to sell supplements and books to patients from there office. It may be legal, but I see it as a conflict of interest.
The vast majority, yes 90% or more of patients, experience significant improvement when the correct therapy has been established. There remains a small minority of patients who are resistant to treatment. Even these patients generally improve to a variable extent, if the physician is both creative and persistent.
Multi-specialty Lyme clinics must be developed in the coming years.