The Lyme Patient’s Journey:
One day, seemingly out of nowhere, or maybe after a severe stress, or a surgery, a pregnancy, or an accident; maybe after a viral, or overwhelming bacterial, infection, you suddenly feel bad. In fact your general health suddenly and rapidly declines. Joint pain, fevers, muscle pains come and go. You go to doctor after doctor to no avail, so you research your symptoms on the internet. After extensive “research,” you come to the conclusion that you have Lyme. Maybe you remember you were bitten by a tick, maybe you don’t. Maybe you had a rash, maybe you didn’t. But the symptoms sure sound like Lyme. You go to your primary doctor. “Were you bitten by a tick? Did you have a rash, fever, etc. at the same time?” You’re not sure, so they blow it off as a diagnosis. GP’s are taught – you’re going to have an obvious bite, you’re going to get a rash and a fever. You take antibiotics for 15-30 days and that will work. No rash – no disease.
Back to the internet. More “research.” You read you don’t need to get a rash. You read that parents give it to their kids through birth, that it can be contracted from mosquito bites and every insect on the planet. You can get it from tears, semen, saliva. You kiss someone at the bar and that’s how you got the Lyme spirochete. The questions and uncertainty have now expanded from a person searching for answers to the Lyme conundrum. So you go back to your GP armed with this data. “Look, no rash, no Lyme. You just have something else. Chronic fatigue or fibromyalgia. Let’s give you something for the pain. We’ll send you to a rheumatologist, maybe counseling.”
So you take the measures into your own hands. You contact a Lyme support group or go back to the internet and are referred to a “Lyme literate doctor.” The doctor listens to you. For the first time someone is taking you seriously. The doctor acknowledges your symptoms may fit the diagnosis of Lyme disease. They run a Western Blot and an Igenix test. The Igenix test shows so many “bands.” More testing is done. It looks like you may have Lyme, Babesia, or one of the many other co-infections. So now you think “Hooray!” We figured this out! It was Lyme all along. This is a good thing. I knew it. You can’t treat anything successfully until you understand its cause. We’re on our way.
You begin care with your Lyme literate doctor. The Lyme doctor is treating you with antibiotics for the Lyme bacteria spirochete (and with other modalities for the co-infections which we will address later in this article). Maybe you’re one of the patients that go on the antibiotic pulsing protocols and have a miraculous recovery. We know many of these patients. But maybe you’re a patient who seems to “require” antibiotic therapy for 2, 3, 4, 5, or 6 years. And you don’t seem to be getting better and indeed actually are in fact getting worse. Your doctor orders more tests. Co-infections, metals, food allergies, and more. More medicines, tons of supplements and botanicals, herbs, chelations, pushes, hydrogen peroxide treatments and more. Some may make you feel better for a little while but overall you have the sense you’re not getting better. You’re losing hope and there doesn’t seem to be an organized game plan, a prognosis to figure out what’s gone wrong. Just more tests and more treatment with no end in sight. For many, if not most, the story ends here – with a lifetime of allopathic and alternative pain management attempts to “cure” the disease or simply manage your symptoms as you continue to suffer with your condition with no end in sight. And the reason for this is that the Lyme chronic pain patient at this point is not being treated for the cause of their ongoing symptoms and disease. But how can that be?
Let’s Look at the Testing and “Diagnostic” Procedures:
America’s Infectious Disease Experts (Center for Disease Control) says you have a rash, you get treated with antibiotics and in 30 days you should be fine. (So they are referring to the acute stage of Lyme. You had the rash and are in the first 30 days of infection.) During this time the doctor should run antibody testing (called an ELISA test) establishing whether you have developed antibodies to the Lyme bacteria. If the answer is yes then the next step is to run a Western Blot test that will further verify the infection. The CDC says that if your ELISA test is negative for having the antibodies to the Lyme bacteria you shouldn’t bother with the Western Blot test. If you have the rash, the symptoms and have two positive tests, you, as a doctor, should treat for Lyme. Remember – even if you are months or years out from your symptoms this very strict and scientifically sound approach is for the acute (within 30 days) infection.
Juxtaposed the Lyme literate doctor, who rarely sees a Lyme patient within the first 30- 90 days, will say no matter what the ELISA test says, you should get a Western Blot test. And we have our own criteria for interpreting these tests which is, let’s say, not as stringent as the CDC’s criteria; and by the way we use Igenix anyway. By all standards the Igenix testing (and subsequent co-infection testing) is understood to not be very accurate and subject to a wide variety of interpretations. This diagnostic rift is only the beginning of the Lyme patients’ barriers to improving their condition. Next we’ll discuss the four major problems this rift causes for the Lyme patient as well as discussing the treatment conundrum.
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.
We ended part I in last months’ issue by revealing that the chronic Lyme patient who is not responding to the present “classical” alternative Lyme protocols is because these are acute protocols attempting to address a chronic autoimmune disease.
Indeed Lyme has been verified to be an autoimmune disease. We have learned so much about autoimmune diseases within in the last year or so. We now know that rheumatoid arthritis is triggered by bacteria in the mouth, gut, and urinary tract1. We know that multiple sclerosis is associated with leaky gut syndrome and that it is also associated with chronic Epstein Bar infection. We also know that Hashimoto’s Thyroiditis is triggered by gastro-intestinal food reactions, genetics, stress, and infections in the thyroid from 1 to 3 different viruses. In our clinical experience we’ve observed gut and infectious components driving most autoimmune conditions. Sjogrens has been proven to be related to Epstein Bar viral and H. Pylori infections. This is the new field of autoimmunity. And we now know that chronic Lyme disease is an autoimmune condition that has joined the party.
Let’s go a little deeper into the mechanisms of Lyme as an autoimmune condition. This new study1 looked at Lyme disease patients from the perspective of one specific enzyme called Matrix Metallo Protienase 10 (MMP10). This tiny enzyme chews up collagen (the main insoluble fibrous protein in connective tissue) in joints to keep it physiology balanced normally. In the people who are inoculated with the Lyme bacteria the immune system starts making antibodies (immune cells that tell the brain that these are bad cells that have to be eliminated) to this MMP10 enzyme. Even if the inoculated person has been treated by antibiotics to kill the Lyme bacteria their immune system frequently, at the same time, is making antibodies to this enzyme (MMP10) – even if they are feeling better from the antibiotic therapy. And this same study has demonstrated that those antibodies that were created in those people that had been treated with the antibiotics but still had symptoms were the culprits for the ongoing problem.
For the non-biochemically or immunologically inclined – you may skip this paragraph. The difference between the above group that felt better with antibiotic therapy and the group that doesn’t feel better or feels worse is that there is actually a t-cell (t-cells or t-lymphocytes are white blood cells kill and play a central role in cell-mediated immunity) response that continues to try to kill the MMP10 enzyme. B-cells make the antibodies to the MMP10 enzyme, t-cells then come in to kill the targeted enemy. Except MMP10 wasn’t the enemy until the antibody’s mistakenly attacked and target them for being killed. This is a classic autoimmune response. And every time something wakes up your immune system it attacks all MMP10 enzymes in your joint collagen and you have autoimmune mediated joint pain.
So let’s say the Lyme patient is being treated with antibodies and your Western Blot or Igenix or Darkfield Microscopy say the bacteria is gone but the patient still feels terrible. It’s because your immune system is still killing the heck out of your joints (the MMP10 enzyme) and at the same time whatever other tissues in your body that your immune system has already been programmed to attack. The article that we have referred to in the references confirms that you are getting antibody attacks (an autoimmune attack) on those other affected tissues. Who knows what other tissues you may have developed antibodies to? In our office we see antibody attacks to the thyroid, gut, cerebellum, pancreas, and other structures daily. We don’t really know all of the other tissues that can be involved in an established immune attack. But we do know that it’s rarely only one. So the Lyme patient in the above mentioned example won’t just get joint pain from their immune system attacking the MMP10 enzyme – but instead they will get symptoms from all of the tissues in their bodies that are vulnerable to the generalized attack. If they have rheumatoid arthritis their symptoms will flair, Hashimoto’s Thyroiditis symptoms will flair, MS symptoms will flair, etc. If you don’t know that you have these immune conditions and these symptoms flair it creates quite an eclectic set of symptoms and quite a bit of confusion as to what’s going on. And the diagnosis is often Lyme and the approach is often to kill the bacteria and its “coinfections.”
What does it all Mean?
Once Lyme is chronic (has developed antibodies to MMP10) the approach is no longer to kill the bacteria. The answer is regulating your immune system. This is why we see consistently substantial improvement in our fibromyalgia patients who are also presented with Lyme diagnosis even though we were directing treatment only to dampen their immune system and stress response. In the end the problem for the chronic “Lyme” patient was autoimmunity all along.
It all starts in the gut. There’s definitely a gut-immune system connection. It’s a pretty well known fact that 70% of the immune system resides in the gut. We have observed clinically that by figuring out the GI tract and healing in terms of 1. Utilizing as many as 7 different diets based on that patient’s history, exam, and blood work. 2. Working with the bacteria population in the gut (we rarely use probiotics). 3. Killing off bad bacteria. 4. Making sure that antigens from food and bacterial components also are absorbed less because when they’re being absorbed at too high a rate in your gut your immune system is unable to calm down. When it calms down your immune system can better fight off other infections in your body and can come into better balance. 5. Killing off any pathogens in the area. 6. Healing the inevitable leaky gut. 7. Eliminate the increased cortisol load on the gut and immune system.
Relative to number 7, we have seen (and this is a key to long term recovery) that there is a significant brain/neurological component to addressing autoimmunity. So frequently chronic autoimmune patients are massively stressed out, often to the degree that you could accurately designate these patients as experiencing some level of PTSD. These sufferers have an over-firing fear mechanism in the brain (specifically in the amygdala) that is driving their stress hormone cortisol too high or too low in such a way that your immune system is further continuously out of balance allowing it to keep attacking your “healthy tissues.” And this is not a mechanism you can sufficiently dampen with drugs (Xanax, Prozac, etc.) or adaptocrines, or neurotransmitters for any length of time because none of them are directly affecting the mid-brain (the location of the fight/flight response) from which the problem originates.
So the initial battles for dampening the immune system are gut and “stress” mechanisms. Then, and only then, can the practitioner have any chance of directly handling any other contributing infections. Yes we handle the non-gut infections if at all last, not first. And that generally is the algorithm for chronic pain, many chronic conditions, autoimmunity, and as of February 25, 2016, “Lyme disease as well.”