I'm just wondering if anyone has any sort of info or insight as far as treatment efficacy,
The most effective abx was ciprofloxacin (levofloxacin would be more effective but it was more expensive and my GP couldn't prescribe it) but I had to suspend it due to tendonitis. I was then prescribed a combination of minocycline, rifampin and azithromycin which worked fine. After about four five weeks all B. symptoms were gone. I was on that regime for three months, that was seven years ago. Symptoms never came back.
Any info would be much appreciated!
In my case treatment helped a lot esp with CNS symptoms. Your best source of information is Dr Burracsano's guidelines. For me it worked out just like he writes in his guidelines.
http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf
BARTONELLA-LIKE ORGANISMS
It has been said that Bartonella is the most common of all tick-borne pathogens. Indeed, there seems to be a fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However, several aspects of this infection seem to indicate that this tick-associated strain of Bartonella is different from that described as “cat scratch disease”. For example, in patients who fit the clinical picture, standard Bartonella blood testing is commonly non-reactive. Furthermore, the usual Bartonella medications do not work for this- they suppress the symptoms but do not permanently clear them. For these reasons I like to refer to this as a “Bartonella-like organism” (BLO), rather than assume it is a more common species. Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles, especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red papular eruptions. Lymph nodes may be enlarged and the throat can be sore. Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is very insensitive. Therefore, the diagnosis is a clinical one, based on the above points. Also, suspect infection with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with a significant course of specific treatment.
The drug of choice to treat BLO is levofloxacin. Levofloxacin is usually never used for Lyme or Babesia, so many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact be infected with BLO. Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least one month. Treat for three months or longer in the more ill patient. It has been suggested that levofloxacin may be more effective in treating this infection if a proton pump inhibitor is added in standard doses. Another subtlety is that certain antibiotic combinations seem to inhibit the action of levofloxacin, while others seem to be neutral. I advise against using an erythromycin-like drug, as clinically such patients do poorly. On the other hand, combinations with cephalosporins, penicillins and tetracyclines are okay.
Alternatives to levofloxacin include rifampin, gentamicin and possibly streptomycin. A very recent article suggests that prior use of quinine-like drugs including atovaquone (Mepron, Malarone) may render Levaquin less effective. Therefore, in a co-infected patient, treat the BLO before you address Babesia species. Levofloxacin is generally well tolerated, with almost no stomach upset. Very rarely, it can cause confusion- this is temporary (clears in a few days) and may be relieved by lowering the dose. There is, however, one side effect that would require it to be stopped- it may cause a painful tendonitis, usually of the largest tendons. If this happens, then the levofloxacin must be stopped or tendon rupture may occur. It has been suggested that loading the patient with magnesium may prevent this problem, and if the tendons do become affected, parenteral high dose vitamin C (plus parenteral magnesium) may afford rapid relief. Unfortunately, levofloxacin and drugs in this family cannot be given to those under the age of 18, so other alternatives, such as azithromycin, are used in children. Incidentally, animal studies show that Bartonella may be transmitted across the placenta. No human studies have been done.
BARTONELLA & ”BARTONELLA-LIKE ORGANISMS”- · Gradual onset of initial illness. · CNS symptoms are out of proportion to the musculoskeletal ones- if a patient has no or minimal joint complaints but is severely encephalopathic (see below), then think of Bartonella/BLO. · Obvious signs of CNS irritability can include muscle twitches, tremors, insomnia, seizures, agitation, anxiety, severe mood swings, outbursts and antisocial behavior. · GI involvement may present as gastritis or abdominal pain (mesenteric adenitis). · Sore soles, especially in the morning. · Tender sub-cutaneous nodules along the extremities, especially outer thigh, shins, and occasionally along the triceps. · Occasional lymphadenopathy. · Morning fevers, usually around 99. Occasionally light sweats are noted. · Elevated vascular endothelial growth factor (VEGF) occurs in a minority, but the degree of elevation correlates with activity of the infection and may be used to monitor treatment. · Rapid response to treatment changes- often symptoms improve within days after antibiotics are begun, but relapses occur also within days if medication is withdrawn early. · May have papular or linear red rashes (like stretch marks that do not always follow skin planes), especially in those with GI involvement.