This weekend is ILADS’ annual meeting. Many people have written to me about their failed Lyme treatments. Please see earlier posts here and here for my thoughts on chronic Lyme Disease and the disastrous treatments still being pushed by ILADS. If you take a look at their agenda for this meeting, it’s pretty clear that they’re still advocating the same old, same old. There is one talk on XMRV, one on HIV and one on CFS, so there’s a little progress, but the rest of the agenda indicates that they are unable to incorporate anything new into their thinking at all. They don’t know anything about viruses and it would seem they are unwilling to learn. Deplorable. Months before I wrote my open letter to ILADS, I was very vocal with the powers that be in that organization and was told that their guidelines were being revised. But I’ve seen or heard nothing that indicates that it is happening. Why change it? It’s working out pretty well for them. Completely irresponsible!
Here’s a case for you. Adolescent female who didn’t recover when treated for Lyme the way her siblings did. Has been treated for Lyme several times with no results for over a year. Lives in Europe and can’t get any treatment there at all. They had to travel to the US to see an LLMD to get a prescription for an antibiotic and a SPECT scan. The antibiotic didn’t work and the scan is not relevant to anything. Wouldn’t change anything no matter what it shows. The mother of this girl requested an XMRV test and was refused. So he orders tests at Igenex, but won’t order a test from VIP Dx, even for a patient who has traveled from Europe and can’t get tested there. I think there’s steam coming out of my ears while I write this. I know these guys. I knew them when I was in practice and some of them were my doctors. I can list all the reasons why they are behaving like ostriches for as long as they can get away with, but the reality is, I don’t understand. They aren’t dumb, though you couldn’t tell from their behavior. So I can only conclude that they are self-serving. Poor patients.
The current ILADS guidelines should be an embarrassment to every member. In my opinion, this document is contributing to tremendous ongoing unnecessary patient suffering. Exempli gratia, chosen at random: 27. Sequential treatment
“Clinicians increasingly use the sequence of an intravenous antibiotic followed by an oral or intramuscular antibiotic [19,37,101,47,48]. In two recent case series that employed combination therapy and sequential therapy, most patients were successfully treated [19,47]. A logical and attractive sequence would be to use intravenous therapy first (e.g., intravenous ceftriaxone), at least until disease progression is arrested and then follow with oral therapy for persistent and recurrent Lyme disease.”
Let’s take a look at the references. 19, 37 and 47 are from the J Spiro Tick Dis, so not retrievable on PubMed. 101 is a lecture by Joe Burrascano MD, an ILADS member. 48 is a paper that says that clinicians don’t follow the IDSA guidelines. Nothing about efficacy. And no references after 2003 in the entire document. For that alone I would think someone would want to update. Just for credibility. Though I don’t know why you’d want credibility without a clue of what to do.
When you put out a document like that, it is also necessary to look at the effect the document has on the real world. Obviously something the IDSA has never done. But two wrongs don’t make a right. ILADS is supposed to be the good guys.
One thing is increasingly clear to me, chronic Lyme burns itself out to be indistinguishable from CFS. LLMD’s are generally not knowledgeable with respect to CFS. None of my Lyme doctors suggested that I had CFS. Nothing about the end-point of what is being called chronic Lyme fits with an active bacterial or protozoan infection. All the antibiotics in the world, even paid for ones, won’t fix it.
The cytokine storm that occurs when chronic Lyme patients are given antibiotics, called a “herx” by LLMD’s, is not a good thing in my opinion, if it persists beyond a short time. The idea that it means that you are killing Borrelia burgdorferii is, I believe, a complete myth.
Lyme Disease responds to treatment. If it’s going to respond, almost any broad spectrum antibiotic you throw at it will work. Tetracyclines, macrolides, penicillins, cephalosporins work. Patients who do not respond to antibiotics in an obvious way clinically will not respond no matter how long they are blasted. The patients who do not respond likely have a retrovirus or more than one retrovirus. They need specific treatment for the underlying cause of their disease. I am hopeful that all this deviant treatment, on both sides of the fence, will eventually become an anachronism. But for now, a word to the wise. Don’t do what I did.
Patients who do respond to antibiotics, relapse and respond again may need to be maintained on long-term antibiotics. I want to say this very clearly, because I am being cast as anti-antibiotic and I am not. I am against persisting when it is a losing battle. I fully acknowledge how difficult these decisions are at this time. They need to be made individually within the context of the physician patient relationship, but they must be informed by what is known. And what is known is changing very quickly.
We don’t know what part tick-borne disease plays in the total picture. Any good doctor knows what he doesn’t know and acknowledges it. There is obviously a place for antibiotics in this patient population, but the fact that some respond doesn’t justify the huge iatrogenic injuries that are occurring. I’ve heard of quite a few gall bladders lost to Rocephin and a couple of people who still have their gall bladders, but have chronic right upper quadrant pain. And untold losses to the Bartonella witch hunt. People permanently harmed by quinolones and aminoglycosides.
Most of the patients who write to me are clearly hyperimmune or autoimmune. They do not get opportunistic infections in the way that AIDS, transplant or other immunosuppressed patients do. Borrelia burgdorferi and certain activated viruses probably play a part in pathogenesis, but are not opportunistic in the same way that happens with HIV. They do not overwhelm and kill the host.
Of course, if current HIV drugs control the disease, LLMD’s and CFS doctors will quickly become irrelevant. So why would they want to try them? Even if the patients are X+ and are begging for prescriptions. They’d lose their captive audiences. People traveling from all over to pay outrageous amounts of out-of pocket cash, which the doctors can justify to themselves, since they can’t get paid adequately for what they do under the current system, as the patients aren’t covered for what they have. Eventually ID doctors will treat it.
My husband was diagnosed with cardiac Lyme and treated with antibiotics twice for persistent arrhythmias, dysautonomia and the usual TBD suspects. Oral antibiotics made him worse. IV antibiotics gave him C. diff. He is now much better, having refused treatment for almost three years, other than a 5 day course of Alinia a couple of years ago that helped. Ali, who I once considered antibiotic dependent, has had no antibiotics since last fall. Her case actually supports ILADS’ conclusions more than most, and even she is proving them wrong.