Ask the Doctor
By Dr. Jack Burks
MSAA’s Chief Medical Officer
The Role of Gut Bacteria, Parasites, and Antibiotic Therapy in MS Treatment
Q: Upon reading MSAA’s MS Research Update, I was surprised at the omission of a treatment that hundreds of MS patients have undertaken. It has to do with the eradication of a bacterium, believed by many microbiologists and scientists to be the cause of MS and other diseases. I often recommend going to the website, Cpnhelp.org for people looking for more information. It involves following a protocol of certain antibiotics for a period of time. Some people adhere to this protocol for years. I just wanted to draw your attention to this, since many people with MS (in all stages) are involved with this.
A: This subject is complex and poorly understood, but recent research findings will stimulate more studies. As reported earlier by MSAA and others, one area is called microbiome or macrobiotics, which is looking at the flora (living bacteria) of the gastrointestinal tract.
It appears that both “good” bacteria and “bad-for-MS” bacteria exist in the gut. MS medications and probiotics can change the ecosystem of the gut and may help people with MS. As we learn more, watch for updates from MSAA. However, research is at a relatively early stage of development, and answers will require years of rigorous studies.
In addition to bacteria, certain parasites may play a protective role in MS. Research has discovered that parasite infection may reduce the risk and the severity of MS. These parasites appear to modify the immune system in a positive way to reduce disease activity. As mentioned earlier, as more news becomes available, MSAA will work to provide updates.
Q: Everything I hear or read states that fatigue and pain are serious issues for many people who have MS. I am fortunate to have excellent insurance coverage through my former employer. However, my insurance refuses to cover any of the medications that I have used in the past for fatigue and pain. I have used Nuvigil® (armodafinil) and Provigil® (modafinil) for fatigue and Lidoderm® (lidocaine patch) for pain, all with wonderful results. These were all covered by my previous insurance company. But with the insurance I have now, regardless of how much I work to follow their procedures for appeal, I have not been able to obtain any of these medications. The reason for the denial is that they are not FDA-approved with a specific indication for MS.
Can all of the agencies associated with MS come together to get FDA approval for some of the drugs that are proven effective and even recommended by authorities for those of us with MS?
A: You have hit on a major impediment to “Access to Care” for people with MS and other diseases. MSAA along with other MS Coalition members have previously teamed with the American Academy of Neurology to address many issues in your question. We all share your concerns.
In terms of your own situation, you may want to consider switching insurance companies to an insurer who will cover your physician-prescribed medications – if you are able to do so and if the new coverage would fit all of your needs. If you are looking at other insurance companies, be sure to examine the medicines they cover before switching. Since insurance companies make yearly decisions to change coverage, check each year before deciding on your insurance company.
Additionally, prescription assistance program information for symptom-management medications can be found on www.needymeds.org or by calling (800) 503-6897. NeedyMeds is a national nonprofit organization that provides online information to help people who can’t afford medications and healthcare costs.
You may also want to stay active in the fight for coverage of these types of symptom-management medications. You could continue to appeal the denial through your doctor and the medical director of your insurance plan. Other ideas include calling your state insurance commissioner and your congressman’s healthcare staff person, and possibly telling your story to the media. Be your most-vocal advocate.
Q: Years ago and recently, I experienced incredible fatigue and tingling. An MRI revealed a lesion on my spinal cord back in 2002, and my doctor started me on Avonex. A more-recent MRI showed another lesion in a different area of my spinal cord. My B-12 was and continues to be very low and blood tests revealed a deficiency in Vitamin D. I tested negative for neuromyelitis optica. I do not have protein bands in my spinal fluid. Since there isn’t a definitive test for MS, what is required for a diagnosis and what else would cause spinal cord lesions?
A: Your question brings up a number of complex issues when trying to diagnose and treat MS. Many MS experts spend an extra one-to-two years in additional training after their neurology residency to better understand these issues. Your questions are excellent, but you need to continue to meet with an MS expert to fill in the gaps. I expect your efforts will lead to more specific treatment recommendations.
Concerning an MS diagnosis, many diseases may mimic MS. For example, Vitamin B-12 deficiency may cause “subacute combined degeneration of the spinal cord” and pernicious anemia (a condition that occurs as a result of the body not making enough healthy red-blood cells). The origin is related to a lack of a protein in the gut (intrinsic factor) that should allow for B-12 absorption. Have your doctors considered this possibility? You need to continue to monitor and treat your low vitamin B-12.
In addition, your low Vitamin D level (of 23) may be linked to an increased risk for MS. If you haven’t done so already, you should ask your doctor about taking supplemental Vitamin D. I would also continue to monitor your blood levels of Vitamin D. Recommended levels vary; many MS doctors aim for higher levels of 60 to 75 ng/ml, while others may recommend a lower range.
Concerning your possible MS diagnosis, 85 percent of MS patients start with relapsing- remitting MS (RRMS), where patients typically experience neurological relapses followed by recovery. Your lapse in symptoms for more than 10 years may be related to the effectiveness of Avonex for you, but other possibilities must be considered.
With MS, the spinal-fluid test for protein “bands” is often positive, but not always. Tests to measure the speed of impulses to the brain (evoked potential tests) are usually positive, but not always. Eye tests are usually positive, but again, not always. The MRI usually shows “lesions in time and space” with multiple lesions at multiple times, but not always.
This is why I talk about “complex issues” in diagnosing MS. While you listed spinal cord lesions but not brain lesions, I will assume that these did not show on an MRI. If the diagnosis was MS, I would expect multiple MRI lesions in the brain, not just in the spinal cord.
If you lack significant brain lesions on your MRI, “Recurrent Transverse Myelitis” (lesions in the spinal cord, only) may be a possibility. If so, this may require a different treatment than what is used to treat RRMS. Therefore, you need an expert with more information to make the diagnosis of your problems. I suggest a second opinion at an MS center in your area. MSAA’s Helpline Specialists, at (800) 532-7667, extension 154, can help you to locate an MS center.
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Cherry Hill, New Jersey 08034
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Jack Burks, MD is the chief medical officer for MSAA. He is an international MS neurologist, writer, lecturer, and researcher, who assists with the development of new MS therapies and advises patients, families, MS organizations, and healthcare groups. Dr. Burks is a Professor and Director of the MS Program at Nova Southeastern University in Davie, Florida and has authored textbooks, chapters, and articles on MS.