Seeking and providing care for chronic ailments of any kind is rife with uncertainties and unanswered questions. As a patient, you want as close to a guarantee as you can get from your medical provider that the time, money and effort you’re pouring into your recovery is worth it. As a provider, I know that every case is different and that it’s irresponsible to make guarantees of any kind other than that I’ll do my best. Medicine is as much art as it is science; complex conditions may resolve miraculously and simple acute ailments may be frustratingly untreatable. Good training and clinical experience creates expertise and improves outcomes but ultimately it may not be possible for everything to resolve.
So when patients come to me and say they’re looking for a solution for their symptoms of chronic Lyme disease it’s important to get expectations very clear.
As I’ve written before, beyond the 2-week window of acute exposure where antibiotics may be effective we can no longer use the term cure. Instead we use remission. While some patients will have their symptoms evaporate and never return, others may require some kind of ongoing treatment in order to maintain their health. This could be very easy and mild, like following a moderate diet and performing a few minutes of daily breathing exercises; or it could mean that they need to use herbal medicines for a prolonged period of time, treating their bodies to prevent relapse and improve overall health.
While the very existence of chronic Lyme disease is controversial, and many patients are told by their providers that they have “post-treatment Lyme disease syndrome” (which I’ve discussed in a different post), their symptoms often do not abate and in fact may worsen significantly over the estimated 6-month recovery window if they are denied proper treatment.
Typically, Lyme patients at our clinic notice significant recovery in one or more areas within the first month of treatment. This can be as significant as a reduction or elimination of pain; less air hunger; the restoration of a functioning and regular digestive system; or heightened mental clarity. With continued treatment, more systems are restored and patients experience more vitality returning to their lives.
In my clinical experience, the longer someone has been infected by Borrelia and its ilk, the longer they can expect to take to recover. This can be prolonged by many factors: age, stress, other injuries or health concerns, and a history of unhelpful interventions such as prolonged antibiotic use or unnecessary surgical procedures.
In some exceptional cases a full course of Lyme treatment can be resolved in as few as one to three months. In most others, it will take six months to three years. Borrelia and its coinfections can cause degenerative changes in every system of the body that require proper treatment, consistency and time to heal.
Seasonal and environmental factors also play a role. Many patients are susceptible to cold, damp climates and especially the mold exposure that can come from living in them. As a matter of course, we always take extra care in the wintertime of the Pacific Northwest to protect the immune system and keep blood circulation to the extremities adequate. The road to remission is not always a straight line and it’s normal to experience plateaus or setbacks along the way back to health.
One of my favorite things in clinic is to let a patient know that I’m considering them in remission. This is like a graduation from care to return to “normal” life and it usually means the patient is able to work, play, exercise and take on new projects. It also means that they’ll be tested by life’s stresses and may need to return to the clinic in the future. Major events like accidents, traumas and new infections can cause symptoms to flare and additional care may be necessary. But when it comes around a second time, it’s usually faster and easier to treat, especially when it’s addressed promptly.
I hope you found this post informative and helpful. If you have any questions please ask away in the comments or send the clinic a message via our contact page.
This topic — like most in medicine — is not without controversy and I welcome your feedback. Please don’t misconstrue what I’m about to say as medical advice either general or specific. This information is merely for educational purposes.
The standard course of treatment for acute Lyme disease (the diagnosis of which you can see discussed here) is a 10-to-21-day course of antibiotics, usually Doxycycline or a similar drug, and is outlined here by CDC.
When used in a timely manner and for an appropriate duration this treatment is 80% to 90% effective and is one of the only times that Lyme can be said to be cured. Many patients do also utilize anti-microbial, biofilm-dissolving and neuroprotective Chinese herbal formulas during this time to increase their chances of a successful outcome, and following antibiotic treatment use formulas to heal the gastrointestinal system and promote a healthy gut ecology. Additionally, some patients who experience fatigue, pain, or depression following antibiotic treatment find Traditional Chinese Medicine to be exceptionally helpful to resolve their symptoms. For cases of chronic Lyme we use the term remission and make every attempt to ensure that remission is permanent.
Many patients who are not diagnosed or treated quickly enough for this standard treatment to be effective may still be prescribed antibiotics and may still experience some relief — but that relief is often temporary.
Chronic Lyme disease, AKA Post-treatment Lyme Disease Syndrome (PTLDS) is a complex and chronic polymicrobial condition which does not respond to the use of antibiotics and where antibiotics may in fact be dangerous. The name of this condition is under debate but I prefer to use the term chronic Lyme as there is ample evidence (1) (2) (3) (4) (5) available that shows lingering infectious issues in the body; and many patients who seek help for this condition have never been treated by antibiotics at all. To use the PTLDS term is an insult to patients who have never received treatment; and to those that have received treatment, it is implied that an infection is no longer present (this often is not the case). This term is a blatant disregard for the suffering many patients with chronic Lyme experience and often gives them false hope that the condition will resolve on its own.
Patients diagnosed with PTLDS often are prescribed antidepressants, pain medicine and psychotherapy and shuffled out of their doctors’ offices as quickly as possible. These treatments are seldom effective and leave patients feeling unheard, unwelcome and isolated.
The preferred treatment for chronic Lyme by many physicians and practitioners who advertise themselves as “Lyme-Literate” is the prolonged use of multiple-antibiotic cocktails with the intention of trying to hammer the infection into the ground for good. These treatments are also not supported by evidence and in fact evidence is available (1) (2) (3) (4) which points towards a significant amount of danger in engaging in this type of practice. The misuse of antibiotics in children may have an especially harmful effect (1).
Any Lyme patient who has received a prescription for one of these cocktails will likely recall the cringe on their pharmacists’ face when looking at the script. That is because pharmacists are well aware of the dangers of utilizing antibiotics for prolonged periods of time, as well as the potential for drug interactions due to polypharmacy.
The three factors involved that cause the long-lasting suffering endured by Lyme patients, and their solutions:
Borrelia and coinfections, and toxicity must be eradicated when possible. The reason we use the term remission is because the emerging evidence seems to indicate that some of these infections cannot in every case be completely elminated from the body. Borrelia in particular, because of its ability to hide behind a hardened, thick biofilm shell in a cystic state for decades, may not be possible to completely eliminate.
Because chronic Lyme is a polymicrobial condition — not just one organism that causes the debilitating symptoms many patients experience, but a cohort of coinfections and environmental factors — merely using antibiotics by definition cannot be effective. In future posts I’ll describe each coinfection and comorbidity of chronic Lyme in detail.
Nonetheless, fight we must. Traditional Chinese medicine is exceptional at reducing infectious loads of bacteria, viruses, mold/fungi, parasites, and other metal & chemical toxicities. The botanical substances utilized for the last three thousand years in China have a long, safe and successful track record of dealing with even the worst infectious epidemics in human history and are uniquely suited to tackling these kinds of diseases today.
In future posts I’ll discuss some of the key ingredients we use to fight infections, how they are synergistically combined to increase their efficacy, and the latest research which documents how they work in scientific detail. Simply put because these are botanical medicines — plants which have evolved in some of the harshest climates and environments on Earth — they have developed the ability to fight chronic infections from multiple vectors at once and are able to get around the problem of antibiotic resistance.
Because of the first factor, we must strengthen the constitution and immune systems of each chronic Lyme patient to keep them healthy once the infectious load is reduced. As many have experienced, each subsequent month or year that their condition drags on weakens them against further infections. They may catch every cold that comes along, get a food-borne illness from a communal meal which others did not contract, be highly susceptible to environmental factors such as climate or mold toxicity or heavy metal exposure, and have multiple chemical and/or food sensitivities which limit their ability to travel or even leave their own home. The weakened immune system of these patients also leaves them vulnerable to flares of once-thought-eradicated infections such as Borrelia. Because it can be difficult to eradicate Borrelia entirely with certainty, once its infectious load is reduced we rebuild the strength of the body’s immune system to keep any possible lingering nodes of infection at bay.
As an example, Many patients with chronic Lyme cannot produce a fever, and cannot recall having had one over 99.5 degrees Fahrenheit for decades. While it may be uncomfortable to experience, a major milestone for these patients is to experience a nice high fever as their body fights off an acute infection successfully.
Organ and tissue damage caused by the infections. The specific damage each major infectious and toxic vector of chronic Lyme can cause is an article I’ll write in the future. But to sum up briefly: microscarring, biofilms, and chronic infectious and toxic loads can reduce the function of the liver, kidneys, heart, lungs, digestive system, endocrine and nervous systems — every system of the body really. This must be repaired and Chinese medicine, due to its long history of working successfully with chronic degenerative conditions, is uniquely suited to be useful here. We have formulas which are able to influence gene expression for specific growth factors and restore detoxification pathways that are especially powerful in these situations.
Chinese herbal medicine is fantastically effective at addressing both the root cause of the suffering that chronic Lyme patients endure, and at relieving the symptoms.
This is a common question I get from patients and other practitioners I’m training.
The truth is that outside of a few specific examples which we’ll cover here, it can be difficult to get a concrete diagnosis for Lyme. But even if the diagnosis is difficult to obtain, there may still be strong hope for complete recovery. Please read on and contact us with your questions.
If you find a tick bite, you develop an erythema migrans rash (aka target lesion or bull’s-eye rash), and you get flu-like symptoms without any respiratory involvement (fever, malaise, joint pain, especially one-sided knee pain, digestive upset especially diarrhea), you can bet you’ve got acute Lyme disease. We call this a clinical diagnosis. No testing is generally necessary and it’s best to begin treatment as quickly as possible.
As terrible as it sounds, if you’re going to get Lyme this is the best-case scenario because your diagnosis is clear and the treatment is simple. Go to your primary care provider and ask about a course of antibiotics. A 6-week course is generally preferable. Finish the course as prescribed. Get lots of sleep, reduce your stress level for this period of time, and take generally good care of yourself — eat healthy, simple foods, get gentle exercise, surround yourself with your closest friends and family to cultivate happiness and a healthy microbiome.
Like most medicine this treatment isn’t perfect, and the antibiotics can be rough, but it’s very effective for acute Lyme and if it can save you from requiring long-term treatment to put chronic Lyme in remission it’s probably worth the discomfort. If the antibiotics are really messing with your system, or afterwards you just don’t feel like yourself quite yet, seek help from a skilled Chinese medical herbalist. You can also take Chinese herbal medicine at the same time as the antibiotics and there is some evidence that this makes the antibiotics more effective — multiple vectors of antimicrobial action reduce the likelihood of antibiotic resistance and adaptive behavior by infectious agents; herbs can effectively dissolve biofilms and make it harder for the bacteria to “hide;” and many Chinese herbs and formulas are neuroprotective and can help prevent Borrelia from entering the central nervous system where antibiotics are less likely to work. (1) (2)
When the course of antibiotics is completed, you’ll likely — but not always — be cured of Lyme. If the symptoms persist, see a practitioner who knows how to treat your presentation and understands your history; with luck and a little time you’ll be yourself again.
Two possibilities here: either you find a tick bite but have no signs or symptoms of infection, or you have an erythema migrans rash and flu-like symptoms without respiratory involvement, but you never found a tick.
If you’re in the first scenario: conservative measures are best. Not all ticks carry Borrelia, the bacteria that causes Lyme (though they can carry other pathogenic organisms). You can very often send in the tick for testing to determine what pathogenic microorganisms it was carrying. Contact your local county health department to see if they perform this test in-house, or use a commercial lab such as Tick Check. It’s important that the tick be removed from your skin properly; certain techniques may encourage more discharge from the tick of its stomach contents which can contain disease-causing pathogens.
If you’re in the second scenario: first ask yourself what you’ve been doing in the last week. Have you been anywhere that a tick bite is likely — Hiking? Camping? Gardening? Have you been in any grassy areas, especially areas where tall grasses are on the edge of a wooded area? Ticks, especially in their nymph stage (the most likely stage of life for them to carry Borrelia), can be incredibly hard to detect as they are only 2mm in size, smaller than a poppy seed.
Lab testing for Lyme disease is not yet a mature science. You can get an IGM Western Blot test from your primary care provider but these are not 100% accurate and have a high rate of false negative findings. Nonetheless, if you’re showing all of the symptoms of an acute infection and you’ve recently been spending a lot of time outdoors, there is a good chance you’ve contracted Borrelia and should take appropriate measures. A course of antibiotics may not be inappropriate and it’s worth having a conversation with your primary care provider to see if that’s right for you. If you’re averse to using antibiotics, especially without a concrete diagnosis, you can use constitutionally appropriate Chinese Herbal medicine. Make an appointment with an experienced practitioner and there is a good chance you’ll get out of things okay.
If you recall a tick bite, an erythema migrans rash, and you now have symptoms of chronic Lyme disease or “Post Lyme Disease Syndrome” (the accuracy and use of these terms is hotly debated), you almost certainly have had exposure in the past which is now causing your symptoms. This must be treated by a skilled professional. Many “Lyme-literate” physicians will utilize prolonged cocktails of multiple rotating antibiotics despite evidence contrary to the efficacy of such methods and the harsh side-effects they have on the body. Treating these cases with Traditional Chinese Medicine as a “damp” disease, or as Gu syndrome — outlined by my mentor Heiner Fruehauf — is largely effective, though it can take some time. Consult a practitioner with training and experience in this area please.
This is again an area in which the science of biomedical diagnosis is not yet mature. Many tests are available which claim to have differing degrees of accuracy but only a few are actually helpful. I’ll outline those here:
IGG Western Blot: 5 positive bands are required to report a case of Lyme to public health authorities. In my clinical experience, this threshold is too high and ignores many cases of persistent infection. If patients present with history and symptoms of likely exposure to Borrelia and confections, and have even one positive band on this test, I generally recommend an initial course of diagnostic treatment with Chinese herbal medicine. The risks involved with treatment are low and if the symptoms improve or a Herxheimer-like reaction appears, we can make a likely clinical diagnosis of chronic Lyme disease.
CD57: The utility of this test is somewhat controversial. The CD57 test is not specific to Lyme as there are other possible reasons that a count on this test could be low. However, as TCM treatment is not specific to Lyme either, I find that having patients get this test at the beginning of treatment can be helpful so they can see an objective measurement of improvement as they heal.
A note on ordering labs: In the state of Oregon my license does not permit me to order labs on behalf of my patients; so I always refer to other types of providers who can do this. Some patients have found ways to order labs themselves; I recommend going through a licensed provider who can help you interpret the test results accurately.
If you are in this category this can be a frustrating and nebulous affair. Many patients with symptoms but no clear diagnosis have a difficult time finding effective treatment and bounce from provider to provider looking for answers. Making sense of the different attitudes towards the existence of chronic Lyme disease, the diagnostic criteria required to name it as such and the treatment methodology can be daunting and exhausting.
I hope these guidelines are helpful. As a piece of commentary I will add that the vast majority of patients with chronic Lyme I treat have a clinical diagnosis. They are either in category 3 from above (tick bite with rash) but did not receive treatment with antibiotics timely enough for it to be effective or were not treated at all, or in category 4: chronic insidious onset of complex and changing symptoms which wax and wane but become worse over time and are hard to diagnose but show a positive response to treatment as Gu syndrome.
One final word on coinfections: Lyme is considered a “polymicrobial” disease — it is a syndrome tied particularly to different strains of Borrelia but also frequently involves other bacteria, molds, viruses and even parasites. Extensive (and expensive) testing can be done to identify the specific microbes involved in each patients’ case; many of these tests are also not mature in their accuracy and speaking from clinical experience once we have a diagnosis of Borrelia and begin treating as presented in TCM terms, we always assume the presence of multiple different infectious agents and treat the patient as such.
If you have questions about the information presented in this blog post please contact my office.