Therapy for multiple sclerosis doesn't only mean medications made by pharmaceutical companies, but also physical and occupational therapy, cognitive and psychological therapy, meditation, yoga and other exercises and complementary and alternative medicines.
Complementary and alternative medicine is actually a big group of different types of therapy; many of them include herbal products, which are readily available even without prescriptions. This is because botanical products are treated like food products and so do not need FDA approval before being sold. However, anything that makes a medical claim for alleviating a symptom, disease, or diagnosis should be studies just like anything else we take as patients (or give as healthcare providers).
This means that just like we expect new medications for MS to be proven to be both safe and effective, we should expect the same from complementary and alternative medicines. Especially since many of the companies selling these products make big claims and charge a lot of money for them (and they aren't covered by health insurance). I wanted to use this space to go through what we do know about some of the medications and to talk about how we are moving forward in trying to prove that some of them do or do not work.
LDN (Low Dose Naltrexone) is a low dose version of an oral medicine called Naltrexone, which is an opiate receptor antagonist. Meaning, that it was developed in higher doses to block the effects of opiates, such as heroin. Remember that opiate receptors are involved with pain and I would love to hear from people out there who have been on LDN whether their pain increased on LDN. The problem with the LDN claims -- that it makes people feel better with MS is that there have not been scientifically rigorous trials looking at LDN in MS. But thankfully there are trials going on now -- so in the future we will know more about the safety and effectiveness of LDN in the treatment of MS.
Until we know more about the safety and efficacy of the different complementary and alternative medications, people should be cautious about taking chances with these untested treatments, especially when they cost large amounts of money. The cost of healthcare is high enough without you us having to spend money on untested treatments. The issue of untested safety is not an insignificant problem --- we are entering an era of MS treatments where we don't always know if our medications, even alternative ones, are going to be safe. We think of MS an autoimmune disease -- meaning that the body's military, or immune system, gets misdirected, and instead of attacking foreign invaders, like bacteria and viruses, the body attacks itself. Many untested pills make claims about 'boosting the immune system" -- which may or may not be good in MS (where the immune system is already a little hyped up).
As an example, minocycline is one of the hot medicines being looked at in many neurological diagnoses, but recently in a trial of minocycline in ALS (Lou Gehrig's disease) actually made the patients do worse, not better and it is no longer being receommended in ALS. Important safety information like this is only discovered through rigorous scientific clinical trials.
Complementary and alternative medicine (CAM) can be thought of as: (a) medications used in an attempt to cause disease modification; (b) medications used for symptomatic management; or (c) non-medication alternative therapy.
(a) CAM has never been proven to modify the course of MS, unlike the injectable and infusion medicines (and we are working on oral medicines in trials now). In the history of MS there have been different theories on where MS comes from. For a long time viruses were looked at as a possible cause of MS, and some researchers are still looking for a viral cause of MS. Most people are talking about an autoimmune cause of MS, but there is growing interest in the non-inflammatory aspects of MS, sometimes called neuro-degeneration. The great think about the scientific method is that our theories change as we learn more from laboratories and trials.
(b) As CAM is tested in various MS symptoms and either proven or disproven, they enter into the realm of Allopathic (conventional) medicine. This is why we are trying to do trials of various herbal medications to see if they are safe and effective. We expect this standard of our "Western" medicines, and we should expect the same from CAM.
(c) Many non medicinal CAM have entered into Western MS treatments already -- such as acupuncture, Tai Chi and Yoga.
Complementary and alternative medicines are great when they are proven to be safe and effective, but when they are unproven, and unsubstantiated claims are made they can be costly, ineffective, and potentially unsafe.
I look forward to reading your questions, but please remember that I cannot make specific medical consultations - for all of those you need to speak to your own personal doctor, nurse practitioner or physician assistant. I will answer general questions that can help ensure that you are empowered through education when you speak to your healthcare provider.
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