A 30 year old female was first seen about 15 months ago. She believed she had been exposed to Lyme disease on a Maryland farm. She had a year of progressive symptoms before our first visit. She developed: joint pain, muscle pain, memory loss, numbness and tingling and sweats. She had been a patient at Kaiser and had previously tested negative for Lyme twice. Labcorp found 41 bands in the IgM and IgG positions. She was treated with: Amoxicillin, Biaxin and Plaquenil. After three months low dose Flagyl was added. An IgeneX test showed the dramatic IgM response with 11/14 bands positive after three months of treatment. Over time, her antibiotics were modified. Amoxicillin and Biaxin were changed to Ceftin and Doxycyline. She had a quick positive response to treatment, but her symptoms waxed an waned over a period of months despite continuous antibiotic therapy. After one year she reported about a 70% overall improvement. At that point Zithromax and Rifampin were used in place of the Doxyclyine. The Ceftin was continued. She showed some incremental improvement. About three months ago it was decided to target the Babesia syndrome. She was placed on Malarone and a low dose of Clindamycin.
Things quickly turned around. At our last visit, one week ago she was almost 100% improved. This is a very grateful patient who feel she might have become disabled without the help I provided for her.
Points: I think the Rifampin was of some help. I don't know why. The current model would suggest it was more active against a Bartonella organism. I would not make this claim.
The Malarone and Clindamyin was effective. The current model would suggest this treatment was active against a persistent form of Babesia. This is theory. There is no laboratory evidence to confirm this. It has been pointed out that Malaron and Mepron may also have activity against cystic forms of Lyme. There are other potential explanations for the efficacy of this therapy. Of course, she may indeed have had chronic Babesiosis. I have found, in my practice, that Malarone works just as well as Mepron. It is more palatable and much more cost effective. I do not push the dose beyond two tablets per day. I have found that the timing of its application is the critical factor. It is more effective after a prolonged course of more typical Lyme therapy. The addition of Artemesin may have some additional benefits, but I not yet convinced of this.
I believe the presence of a WB 31 band is good evidence that the disease was longstanding. It does not matter if it presents as an IgM or IgG band.
Wouldn't Clindamycin also work on Bartonella? Maybe it was the clindamycin that made the big difference and not the Malarone?
mingI see from several recent posts that you do not necessarily believe in BLO. Have you considered that the seronegativity of bartonella may be a result of an inability of the labs to pick up all the different strains that have yet to be identified? Was curious as to your thoughts on that. If a patient presents with neuropsych symptoms, foot/sole and shin pain, twitches, would you attribute this to Lyme in the absence of a positive bartonella test?
What about the pathogen that Clongen is working to identify....could this be "BLO"?
Hi, two tablets of Malarone is way too low. It may create resistance problems with Babesia.
Recommended dose is 2x3 malarone tablets per day - the amount of atovaquone is equal to usual recommended dose of 2x750 mg of Mepron.
A few basic points- one is the dose of Malarone being used for what purpose- the malarial dose for which the drug was designed? The second is- appropriate dose to treating what? If a patient has been thoroughly screened serologically, by broad species PCR, and by a careful blood smear done by a good microbiologist and zero evidence of babesia has been found- face it, we are probably treating something else that responds to the same drug. The mechanisms of action on these drugs, even when fully known, are such that a broad range of organisms can be affected. We use them to treat many diseases. Response to malarone or mepron therapy is not proof of Babesia- it is proof you killed something with sensitivity to that drug.
Patients with Lyme have foot pain. It is called plantar fasciitis. It is similar to tendinitis. Many Lyme patients have twitches- a common neurological complaint. Nearly all Lyme patient have neuropsychiatric complaints.
I am reporting my clinical results.
Malarone also has proguanil hydrochloride. These are synergistic drugs. You cannot compare Malarone to Mepron directly. There are no studies that I know of, for the use of Malarone in the treatment of Babesiosis. Where do these "recommendations" come from?
You do have a valid point that whatever was being treated responded to either Malarone or Clindamycin or the combo of drugs.
However, a single PCR and one bloodsmear does not definitely rule out Babesia or Bartonella. Dr K would be one of the first to agree that these PCR tests produce high levels of false negative results.
Unfortunately few patients have enough money to order 6 or 8 PCR tests or however many are needed to rule out a false negative. There are few if any studies showing the actual false negative rates for Babesia or Bartonella. Those I have seen for Lyme report something like 4 or 6% of patients with Lyme have a positive PCR.
I frequently see comments where you retest patients for Lyme by Western Blot and they seroconvert.
Do you retest for Babesia and Bartonella as well? Just curious as to whether any of those patients seroconvert as well.
Seibertneurolyme- I agree with you 100% on the sensitivity levels of PCR's and smears for Babesia and Bartonella. I do very much also think people should be treated with what make them well- reguardless of whether it has a name or not. However, both Babesias and Bartonellas of all types are commonly carried subclinically across the species (humans and animals)so there presence or absence truly does not indicate clinical disease. Even when they are found, it does not mean that is what is causing the clinical signs. Bartonella and Babesias are a bit different than Lyme PCR wise- they are blood bourne organisms versus Lyme which prefers to live in the tissues. I would suspect highly that if we did brain and joint capsule biopsies and PCR's on them, that we would come up with fairly high rates of Lyme PCR positives. However, not many of us want to lose a peice of brain or joint to see.
The biggest issue I see with calling something a Babesia or Bartonella organism that we are treating for when we cannot document it clinically is that it prevents us from looking for and finding the real disease organism that is responding to the Malarone, or Mepron, or Rifampin, or whatever. For example, the blood "bacteria/parasite" Dr K is working on. The chances of that being a BLO and not amplifying to any of the known bacterial primers is slim. I am about to make what I am sure will be a very unpopular point. The antibiotic types we use to treat are very broad spectrum- for example, malaria- a very well studied blood parasite- has sensitivity to doxycycline and the floroquinalones as well as the drugs we traditionally use to treat it. Toxoplasmosis, another parasite, has sensitivity to a number of antimalarials and antibiotics including Mepron and Clindamycin. This blood bacteria/parasite- whatever it is- may be the primary disease and not a co-infection. It may be that it cross reacts with the western blot for Lyme esp in IgM (which is documented for other organisms at the "specific" bands) and that we have some other emergent, unknown infectious disease that is being recognized as and called Lyme.
Nothing else has ever seroconverted.
Regarding your last comment, LLMD....does this mean that you retest and retest for babesia and bartonella, and if a positive doesn't show up at the beginning of treatment, it doesn't ever? Or is it that you don't test?
It seems I have read lots of posts elsewhere about people "finally" getting a positive test, after treating awhile.
I retest periodically.
Of course patients frequently get re-infected.
I give UP! I have been fighting this since 2007. I've been through the IV Rocephin, the Babesia treatment, the oral antibiotics for lyme, babesia, and bartonella. I am better than I was in 2007 but something is still wrong. My Igenex test showed two positive bands for lyme but my doctor says I'm almost out of the woods with lyme and he now believes my main issue is bartonella. I do have terrible lymphadenopathy and sore throat, with headaches and neck tension. I am now on Minocycline, Flagyl, and Clindamycin. This combination of meds makes me so sick I have to go to bed. The sickness comes soon after I take the antibotics. My doctor tells me it sounds more like I'm having a reaction to the meds rather than a herx. If these meds aren't doing me any good I don't want to put myself and my family through this. I'm 44 with a 14 and a 12 year old. It is nice to not have my entire neck feel swollen and achy. It really is bad after ANY exertion whatsoever. I'm tired. I'm ready to call in Post Lyme Syndrome, Fibromyalgia, and Chronic Fatigue Syndrome and be done with it.
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