LymeNet- It's about thinking!

This is a one time response.
One of my loyal patients brought in dialogue from a forum called LymeNet. I do not read forums. He was concerned about people disparaging my writing. I told him I was happy that folks were reading my stuff and discussing it. I certainly do not expect people to agree with everything I write. If they disagree with everything it is OK. As a friend of mind is fond of saying: "This is America." I welcome reasonable criticism and am not offended by it in any way. A Blog, unlike a book, is a fluid process. It reveals my thinking in real time. I have changed my mind about many things and I expect this will continue in my ongoing quest for knowledge. I perceive this to be a good thing. Lyme/TBD is a very gray area of medicine. Whereas most physicians prefer dealing with the black and white; I, for some reason, have always been attracted to the gray areas of medicine and other disciplines.

The term "pure culture" Lyme refers to patients thought to have only Lyme. It does not mean that Lyme has been cultured from a patient. I have never cultured Bb from any patient. The best I have accomplished is positive PCRs from synovial fluid and blood.

Please read dog doc's comments. I am not black and white in thinking. The point is that we treat empirically without knowing for sure what we are treating. It is very difficult, if not impossible, to prove that "Bart" patients have Bartonellosis. What we know is that there is a subset of patients who respond better to certain antibiotics. Several co-infections: Bacteria in white blood cells, motile organisms in the blood and a small tumbling organism- resembling a small parasite, have now been seen in TBD patients but remain unknowns. These organisms have been seen through a microscope at 1000 power in whole blood wet mounts by Dr. K., who has extensive experience and training in molecular biology, parasitology and microbiology.

Batonella has, and can be seen in the brain; in a couple of case reports it has proved fatal. But- there are only a few case reports. It is widespread, perhaps the most common tick and vector borne infection found in humans, and it is not generally considered to be highly pathogenic. It is far more likely, in my opinion, that most CNS syndromes in Lyme/TBD patients are do to Bb. AND- most Lyme patients with CNS symptoms respond better to Rocephin than any other drug.

This is not to say that other pathogens or coinfections do not contribute to CNS symptoms. For example, we know that HHV 6 is the most neurotrophic virus in existence. Stratton and Weldon have clearly demonstrated that CPN is a major player in MS. How then does one know with certainty that so called Bart drugs are not really targeting CPN. The point is that there is much we do not know. I think the gate theory may have validity. Lyme may be the gateway germ. It may damage the immune system in such a way that other, heretofore, benign germs, become opportunistically pathogenic. If this is the case, then the treatment of Lyme alone may frequently put these other germs back in their box.

LymeMD is just a blog. If I say controversial things it is to get people thinking; obviously that is the case. Tons of microorganisms can cross the blood brain barrier: bacteria, viruses, protozoa, fungi and who knows what else. For the most part, these are infrequent occurrences (I think). In patients with Lyme disease/neuroborrelis, Bb is generally assumed to be the culprit until proven otherwise. Admittedly, in patients with profound sweating I consider Babesia or a Babesia like organism to be a major factor. I prefer to treat for this after some Lyme therapy; I have found this approach to be more effective.

I do not rely entirely on lab tests despite rumors to the contrary. Many patients treated even with IV antibiotics are seronegative. That includes Babesia as well.

Biofilms are of unknown significance. This is not a specific feature of infection with Bb. Nearly all bacteria can form biofilms. The formation of biofilms has been best described with regards to oral cavity bacteria. These bacteria usually do not cause clinical disease unless the biofilms are disrupted by active inflammation.

The successful treatment of patients with TBD frequently requires patience and trial and error. There is no one "miracle" drug that works for everyone. I wish there was.

Some patients respond best to: Rocephin, Biaxin, Plaquenil, Doxycyline, Minocycline, Cipro/Levaquin, Rifampin, Zithromax, Cleocin, Mepron, Malarone, Amoicillin, Amoxicillin at a high dose with or without Benemid, Omnicef with or without Benemid, Ceftin, Flagyl, Tindamax and others, this is just off the top of my head. At least one patient had a spectacular response to Ivanz.

Experience? I have treated an average of 50 patients with tick borne illness per week for the past 3 years. I schedule face time with patients, 60 hours per week. As of late, I typically see 75 Lyme patients per week. Patients are referred to me on a regular basis by other well known LLMDS, especially the sickest ones. I treat several physicians and their families.

I do not claim to have the experience of Jones or Burrascano. But I am constantly in a learning and thinking mode.

Politically the focus should be on Lyme. This is where the best scientific evidence exists. People in "Lyme land" should not loose sight of this. If the politics do not change LLMDS will become a threatened species.

I am saying that LLMDS should not work within a rigid box. The correct paradigm is far from established. As noted, Dr. Burrascano has frequently changed his opinion and emphasis.

My words should never be construed as authoritative. That has never been my intent or claim. But at least I am putting food for thought on the table.

I starting writing this Blog for personal reasons. I am not computer or internet savvy. I hope this has helped straighten out some confusion generated by my comments.

Many voices on the forum sound very angry, perhaps rightfully so. However I would suggest that a more sanguine, and perhaps unified approach, would be more helpful in effecting the political change that we all desperately need.

PS: I never suggested that Rocephin kills Bartonella. Rather, I suggested that many patients diagnosed with Bartonella based strictly on clinical grounds get better with Rocephin. The implication here is that the described syndrome was the result of Bb infection, not Bart. One can conjure up many other explanations. Sometimes my comments are misunderstood and/or taken out of context.