Friday, February 27, 2009

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.

13 comments:

EyeBob said...

Unfortunately LYmenet has many, many people who have many, many different problems. On the whole the folks who post there (me....less and less) are very well-meaning, but usually somewhat desperate. I would put myself in that category 2 years ago at the beginning of my treatment. What we all need are objective observers, like LLMDs with real knowledge of the nuances of all the ways that we are afflicted with TBIs. We also need them to understand how we are getting better, even when we can't see that ourselves. Often times our (the afflicted LYmies) progress is so slow that it's demoralizing...we go searching for alternatives....of all types....and hence...Lymenet. Don't get me wrong. I like Lymenet. I've learned quite a bit. Don't take this as a disparaging comment.

bt

Lauren said...

This blog has been the most informative information that I have read. To often, noone is willing to put themselves out there for reasonable scientific discussion, which is what you are doing.

You have helped me understand more about my disease and you haven't even treated me.

Keep up the great work! We need you.

girl mark said...

just for the record, lots and lots and lots of people on forums like Lymenet and Lymefriends.com regularly express support for what you have to say. I also agree w/EyeBob that the forums disproportonately represent the sickest and most desparate patients who aren't always thinking clearly and are sometimes ruder that they would like to be, take things out of context, etc. they become nicer people when their health improves.

Starlings Preschool said...

I read Lymenet quite often and also Lymefriends. I have learned what to take away and what not to. But there is a lot of good collective thought going on on these boards.

Seibertneurolyme said...

I heard Dr B speak in person once and he made the statement that Rocephin was bacteriostatic for Bartonella but not bacteriocidal.

I think much of the problem is that there is so little medical literature actually testing the various antibiotics and antiparasitics against borrelia or bartonella or babesia. Add to that the fact that the testing is so poor that no one really knows which infections they have to begin with and it becomes a big guessing game for the patient.

A few lucky patients have definitive testing and know from the beginning of treatment which pathogens they have. Unfortunately many people have been sick for many years and it is just in the last 5 years or so that lyme docs have started routinely treating and testing for co-infections.

Seibertneurolyme said...

Also want to add that I have followed the forums -- primarily LymeNet for the last 5 years. At that time Rifampin was the new drug on the block. There were a very large number of old-time patients who went into remission on that drug. Whether it was treating borrelia or bartonella or mycoplasma I couldn't say.

But I do know that many of those patients had done the IV Rocephin and just about every other drug out there and it was the Rifampin that put them on the pathway to greatly improved health.

I have never seen the same large number of patients leave the forum based on any other treatment.

Lyme report: Montgomery County, MD said...

Hopefully, the treating physician will have a plan to systematically cover the available therapies in an order based on clinical clues and clinical experience. I would hope it is not a guessing game for patients. But perhaps physician directed therapy will at times be based on an
"educated guess."

dogdoc said...

What he said.

Donk said...

I wouldn't minimize the importance of this blog. I've learned volumes about the disease I suffer from by reading your posts. I've seen experienced ID docs who wanted to help me, but had no clue how to treat Lyme (beyond the 28 day and you're done dogma of the IDSA). I really think they could learn from your clinical observations - if they wanted to take the time. Of course there are many who have totally closed minds about Lyme.
But as far as I know there are few if any docs trying to shine a light on this shadowy disease by blogging. This blog may someday be looked back upon as the catalyst that led to a cure for a national Lyme epidemic. Let's hope.

lyme4achange said...

Doc...

With all due respect to the good folks who attempt to keep sanity at Lymenet, there is a reason why some people who have left there call it "Lymenut".

There are a lot of anti-antibiotic people there, trolls, marketeers, sheeple and so forth. Because they are mixed in with the sick people on an internet forum, you have to be savvy to know what you are dealing with.

I don't even bother to read there anymore because thinking, especially making a devil's advocate point to spur conversation, is met with hate. If you question "authority" there or have an opinion that is a little different, you get banned. There is a lot of underlying politics going on there that hurt the Lyme/TBI cause. I'd likely just steer clear if I were you and let it slide.

On their behalf, a lot of bad information is circulated. A lot of online diagnosis by by self proclaimed (pseudo) experts. So the newer people, who are very confused and often suffering from cognitive difficulty, anxiety, and rage issues get misguided. In some ways you cannot blame them, because for some it is the first group they have ever been to that gave them the all-important validation for their illness.

There was a broo-ha-ha on other more scientifically oriented forums when you made the comment a few months ago about certain docs being 'discredited'. There was a complete misunderstanding about what you meant by that. I have been attacked online for making comments exactly like those...but many lyme patients are either unable or unwilling to see the truth behind the dogma.

Your honesty is never going to please many of the Lyme activists. Don't even try...just do what you are doing. Because if we do not face ourselves honestly, how will we know what to do to move forward? You have people on lymenet who have, and will, wish this illness on doctors who wouldn't help them. I once got a PM that someone said they hoped I would never get better.

I was called an IDSA troll because I questioned Stricker being politically fit to be a large figure in lyme. Not because he isn't a fabulous doc, I know a few west coast people who say he saved their lived and I find him eloquent and intelligent. However, his past faux pas in research lead me to think he should stop bringing attention to himself, as he is a big target for the mainstream and will never live down his past "discreditation'. I simply wish he would be a little quieter and continue to help and treat patients and let someone with a less injured past talk to media instead.

Many docs do not read the forums. What I can tell you is that while some people genuinely want to help and think things through critically, you're better off not reading them as it will depress the crap out of you. The Lyme community is in shambles and unfortunately it is one factor in why we do not get taken seriously and that this disease is not taken seriously. If you spend too much time in the forums you might start believing the IDSA's "Lyme Hysteria" and that would be a tragedy.

I read here because you delve into differential diagnosis, you try to keep an open mind. Everything is not Lyme, clearly. There are many other diseases and many other problems out there. People who have Lyme can have other problems not even related to lyme, and can put off treatment for those problems because they immediately attribute every symptom to their lyme. You know that. However the dogma in that forum believes something else.

You will find that if your version of having an open mind doesn't gel with Lymenet's theory of what an open mind is that you will be roasted.

Like eyebob said, some ARE well meaning.

However, uberalternative nefarious advice has taken over, and if you use any new ideas or corrective criticism you will not be accepted there.

I was banned there for saying something just like what I am posting here on a completely different forum. While I was at a completely different IP address at the time and could go back if I chose, I have no interest. The political and scolding email or PM (I forget) I got regarding that was designed to upset and scare me into "behaving" and not criticising Lymenet openly. The thing is, I'm not scared of them, and not scared of not being wanted in their community. Neither should you be. Being dissed at lymenet, doc, is a badge of honor at this point, wear it well. If they don't like what you have to say, chances are you are doing something right.

As a side note, You mention the rocefin IV being what many respond to best. While this may be true, those of us who are allergic and therefore have not tried it are often at the end of what they can have available to them.

Have you looked into tigacil yet? Because it works on the efflux pumps of the bacteria it looks promising but I am not a doctor. As a doc perhaps you can find out the blood brain barrier thing about this newer drug, because I am interested in knowing more.

dogdoc said...

There is an in vitro study showing tigacyl with a lower MIC and cidal activity compared to doxycycline for borrelia burgd. One big problem at this time I believe is cost without insurance coverage for it.

Grateful said...

Dear Doc,

I have a relative being treated by you and I am so grateful that she found you. You are a godsend.

I wondered if you could comment in a future post about Tygacil (as mentioned by DogDoc) and Invanz. You have not yet used either of these drugs on my relative, but they seem to be promising. What do you know?

In your blog posts of 11/20-21/08 you mentioned Invanz (ertepenem sodium). You mentioned that your patient was treated by another doctor with Invanz (a "beta lactam antibiotic that seems to kill everything with a cell wall: gram positive, gram negative and anaerobes.") You said the patient got MUCH better after being on this treatment.

For anyone interested, here is a link to Invanz:
http://www.invanz.com/ertapenem_sodium/invanz/hcp/index.jsp

Tygacil (tygecycline) is a new class of antibiotics called glycylcyclines. Like Invanz, it attacks gram+, gram-, and anaerobes, but works on a different mechanism. It is being studied by Dr. Ben Luft in Stony Brook, CT.

Here's a link to Tygacil:
http://www.wyeth.com/hcp/tygacil

Nexus said...

I've been reading your blog on and off today, and have found your blog to be most interesting and thought provoking. I prefer to avoid black and white thinking as well.