If you have not read part 1 you can find that here
So here’s problem #1 for the Lyme patient who does not get to their initial doctor appointment in the first 30-90 days post infection – The CDC guidelines are for acute infection. You get there (to the doctor) in 30-90 days with an acute infection, test positive for the bacteria, take the antibiotics, and for most people – get better. Problem #2 – most people don’t know when or if for that matter, they’ve been infected, don’t remember a rash and get to your GP months or years later. You are no longer acute, you are chronic. Problem #3 – You show up at the “Lyme doctor’s” office. You are going to get Lyme testing of all sorts that even the Lyme community doctors concede are at the least inconsistent and at worse, unreliable. Problem #4 – Because there really is no definitive testing for Lyme in the chronic phase and knowing that their patients are genuinely ill – there is an agreement among Lyme literate doctors that all chronic problems are Lyme related. This disconnect is a major problem for the Lyme patient.
So you can see the rift that we have going on in the Lyme disease world. And it gets worse.
In the general Lyme scientific literature there is a war going on between infectious disease research doctors, who are highly academic people that like everything in their world to be neat and precise, and the Lyme literate doctors who are clinicians who just want to get their patients better. The war is that the infectious disease researchers are saying that the Lyme literate doctors’ patients don’t really have Lyme based on the research criteria for Lyme and in fact the Lyme disease probably doesn’t exist. And you’re being bamboozled by these Lyme doctors. Lyme doctors say, “Well you know what, I got patients who are chronically ill, they have symptoms of Lyme according to my testing and it makes sense in my paradigm. So I treat them and I’m seeing good results in a percentage of these patients.”
Is it Real?
For the record, we practice functional medicine and functional neurology and we treat chronic Lyme disease. With all deference to the infectious disease researchers – Lyme exists. It may be over diagnosed, misdiagnosed, or not diagnosed – but for sure it exists. And, interestingly, if anyone in the medical profession promotes that it exists, it’s the GP. To further the confusion of who believes and who doesn’t, GP’s are now saying chronic Lyme is real1. “We see you patients coming in with a variety of symptoms and know that maybe you have Lyme disease. You take the antibiotics. You’re never fully recovered, but we know that it’s real. But we are GP’s. We are not infectious disease doctors (who don’t think it’s real). And we don’t really have the data to figure it out. What’s real, what’s not, what’s truth, what’s fiction.” This is what most patients have been through. This utter confusion and frustration. And it’s got to stop. And it will.
The Treatment Conundrum:
Within the Lyme world there are controversial arguments set out in favor of long term antibiotic use (2 – 6 years). This is because in the body, Lyme bacteria keep rearing their ugly heads. They appear and disappear. The fact that they appear and disappear is not a theory. This phenomenon has long been validated. These bacteria are called “persistors.” It’s not that these bacteria have become antibiotic resistant but in order to evade the immune system, they go in and out of tissues or turn into little balls (cysts) and become hard for the immune system to recognize and kill. This phenomenon is the crux of the argument for “pulsing” different types of antibiotics. So you take an antibiotic, then you don’t take it, you take it again, and this has definitely been shown to reduce the bacteria load along with this treatment. There are additional treatments for a laundry list of other issues – coinfections, parasites, heavy metals, cortisol levels, and more. One of the problems with these approaches is that a lot of them, especially the antibiotic therapies are for acute aspects of the conditions. If you’ve had the condition for 3 months or more or years, your body’s in a state of chronicity – which involves different systems and mechanisms.
So for years we have seen a lot of patients diagnosed with Lyme disease (and many who have been misdiagnosed with Lyme disease) come to our offices who have been on chronic antibiotic administration, multiple antibiotics at once while pulsing different antibiotics as well as numerous novel treatments for coinfections and a variety of other complicating factors and they still have many of the symptoms that they started out with. These patients don’t come to our office for Lyme treatment. Instead they are here for treatment of fibromyalgia, chronic fatigue, anxiety, depression, peripheral neuropathy, dizziness, vertigo, balance conditions, etc. All having been diagnosed with Lyme disease. And they are surprised that they do well in our paradigm. We surmised why that might be as technically were not treating them for Lyme. We were treating them for chronic pain and chronic diseases, chronic conditions.
On February 24, 2016 in Journal of Autoimmunity, there was a new research article on Lyme disease. For the Lyme patient and practitioner it should be a game changer. It’s the reason we’re writing this article. This article gives data that all chronic Lyme patients need to know and understand. We will be going into this article in greater detail in part II but the study definitely proves that – after 30 to 60 days – the Lyme disease that does not respond to the above mentioned acute care protocols – because it, not unlike rheumatoid arthritis, Hashimoto’s, Sjogrens, or Lupus, has become a chronic autoimmune based condition. And there is a way to calm it down and get it under control.
