Many years ago, all pharmacies engaged in compounding medications. Over time, with the increase in manufacturing of prescription medications and the oversight of the FDA, compounding became more of a “niche” service for particular patient populations. A modern compounding pharmacy now makes formulations that help fill the gaps in treatment where a suitable commercially available medication is not available. These formulations often complement FDA-approved medications and do not just replace them. While the first-line antibiotic treatments for Lyme disease are commercially available, it is well known that patients often develop associated unresolved symptoms. Compounding pharmacies are often able to make medications for treating Lyme and other conditions that patients are not able to obtain elsewhere.
Why Compounding Has Become More Prominent
The development of effective treatment options lags when a medical condition is not immediately accepted in mainstream medicine. Doctors then sometimes rely on compounding pharmacies to provide medications that have been proven in research to be effective, but have not received any investment from companies to be developed into a manufactured drug. While the rigorous FDA approval process is absolutely beneficial to patients, it precludes the entrance of promising, novel therapies that may turn out to be effective and safe but are not highly profitable.
Making available medications that can not be obtained commercially is one benefit of compounding. Another reason Lyme disease patients use compounding is to customize their treatment based on their unique sensitivities. A compounding pharmacy is able to make medications by using bulk pharmaceutical ingredients. Each prescription is made for the individual patient. That means, for example, that a commercially available medication that has 10 excipients and 1 active ingredient, could be made by a compounding pharmacy with only that 1 active ingredient and no excipients.
Compounding for Lyme Disease and MCAS
It is known that borrelia burgdorferi can induce mast cell activation syndrome. As Lonnie Marcum explains in her excellent article on the subject, excipients in medications can lead to MCAS symptoms in some individuals who have been infected. Excipients are sometimes essential parts of manufactured medications. They make the manufacturing process easier, improve stability of a medication, or may be used to add flavor and color to make a medication more palatable. These excipients do not have an effect on most patients. However for patients with Lyme, MCAS, mold illness and certain other conditions they may have a profound effect. Compounding for Lyme does not involve just treating the original infection but also the associated conditions and effects it has on the body.
The first step any MCAS patient should take is finding triggers and then practicing avoidance of those triggers. If the product that is causing the reaction is not removed, it will be a consistent struggle to find symptom relief. Medications that may be obtained from a compounding pharmacy for treating MCAS include ketotifen and cromolyn. Ketotifen is an antihistamine available in other countries for treating asthma, allergies, and mast-cell disorders. In the United States, since there is no FDA-approved oral version, it can only be obtained through a compounding pharmacy.
Low Dose Naltrexone
Low dose naltrexone has been studied for treating numerous conditions related to inflammatory responses and the immune system. The drug naltrexone is actually FDA approved at a dose of 50mg for managing opioid addiction. At a dose of 0.5mg to 4.5mg, however, the drug exhibits different effects by boosting endorphins and decreasing inflammation. Low dose naltrexone is a non-toxic drug with few side effects that has been successfully used to treat fibromyalgia, Crohn’s disease, multiple sclerosis and more. Compounding pharmacies can make naltrexone in the lower doses that are needed to improve these conditions. Although LDN has not been studied for treating Lyme disease, some patients are using LDN to improve joint pain, brain fog, and sleep issues. In most cases it is offered only after a patient has failed to find symptom improvement from first-line treatments.
Pain Management Medications
Chronic pain is often associated with Lyme disease, especially neuropathic pain resulting from nerve damage. Topical pain creams made by a compounding pharmacy can include multiple ingredients in one formulation. Gabapentin, ketoprofen, cyclobenzaprine, and other medications can be used to improve both muscle and neuropathic pain. Topical application directly to the area of pain is often preferable to taking an oral medication that may have gastrointestinal side effects. The combinations of medications that can be made into a cream by a compounding pharmacy can not be found in any manufactured product.
Treating Other Conditions
If a patient is suffering from an infection that causes sensitivity to certain ingredients, it can affect how they are able to take their medications for other conditions. For example, if a patient is dealing with Lyme disease, MCAS, and also has a thyroid condition, then their thyroid medication may start to cause problems for them. There seems to be some overlap between Lyme disease patients and those suffering from mold toxicity. While various explanations for this have been proposed there is not enough evidence to draw a conclusion on their connection. However a compounding pharmacy can provide treatments like pure cholestyramine for mold toxicity. Cholestyramine is a binder used to remove toxins from the body that can be compounded without additives, sweeteners, and other ingredients that may cause patient sensitivities.
LDN and Lyme Disease – https://www.ldnresearchtrust.org/ldn-lyme-disease
LDN Research Trust Conference – https://www.ldnresearchtrust.org/conference-2019