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While CCSVI (the "vascular theory" of MS) has recently grabbed the lion's share of attention as an alternative approach to understanding and treating MS, there are some older "outside the mainstream" theories and treatments that also deserve some attention. While the list of purported MS treatments is long and sometimes quite bizarre (including everything from bee stings to ingesting colloidal silver), there are two controversial treatment approaches that do stand out, both of which have some strong anecdotal evidence to back them up. These two are LDN (Low Dose Naltrexone) and long-term antibiotic therapy.
LDN-Low Dose Naltrexone uses a long approved drug that was originally intended to help heroin and opium addicts kick the habit. In very low doses, the drug Naltrexone is said to have immunomodulating properties, and the Internet MS forums are peppered with patients who claim that LDN has helped relieve their symptoms and halt the progression of their disease.
Naltrexone blocks the opiate receptors in the brain, and is therefore useful in treating people addicted to heroin and other opium-based narcotics. The drug is typically used in doses of 50 mg for the treatment of addiction. When used in much smaller dosages, 3 mg to 4.5 mg, many MS patients report sometimes dramatic benefits from the drug. Patients suffering from other autoimmune diseases, such as Crohn's disease and Lupus also report symptom improvement and disease remission resulting from the use of LDN.
The use of LDN has been shown to increase endorphin production, and critics have said that this increase in endorphins ("feel good" chemicals produced naturally in the body) helps relieve patient's symptoms without actually addressing the core disease.
Unfortunately, Naltrexone is off patent, and as is the case with all off patent drugs, very little money is available to fund full-fledged scientifically valid trials, simply because there is not much profit to be made from drugs that can be bought cheaply as generics. Several small studies have indicated possible benefit. The results of a phase 2 trial on the safety and efficacy of LDN as a symptom relief drug for MS patients was recently released (click here), and "suggests that LDN is safe and may have positive effects on the mental quality of life in people with MS; but no effect on a patient's physical quality of life". I know that there are many patients taking LDN that would vociferously disagree with these findings, and insist that the drug has indeed positively impacted their physical condition.
I tried LDN several years ago, and derived no benefit from it. My disease presentation is very atypical, though, and I hesitate to draw any conclusions based on my experience alone. Since I now take narcotic painkillers to tolerate the avascular necrosis I developed as a result of steroid use, I'm no longer a candidate for LDN therapy. If I weren't on the painkillers, though, I'd probably give the drug another try, based on the positive reports that continue to filter in. For more information on LDN, click here.
Antibiotic Therapy-The use of long-term antibiotic therapy to treat MS is based on the theory that an infectious agent is responsible for Multiple Sclerosis. The two infections most often linked with MS are Chlamydia Pneumonia, and the Lyme disease bacteria B. burgdorferi.
Chlamydia Pneumonia is carried by a large majority of the adult population, and is usually thought to be harmless. Researchers at Vanderbilt University, though, in addition to British physician Dr. David Weldon, have linked CPN with MS in several studies, and have developed a combination antibiotic protocol, taken over a long period of time (usually 12 to 24 months) to combat the infection. This "Vanderbilt Protocol" has gone through many modifications, and is usually taken in conjunction with a wide variety of vitamins and supplements meant to enhance the effectiveness of the antibiotics and reduce any deleterious effects such long-term therapy might have on the body.
Many patients who have undergone the rigorous combination antibiotic protocol report vast improvements in their condition, with some even claiming dramatic improvements in disability levels and complete remission of the disease. Unfortunately, these reports remain strictly anecdotal, as no long-term blinded studies have been conducted to test the treatment protocol.
I tried a Combination Antibiotic Protocol about four years ago, and failed to see any benefit from it. Again, I hesitate to draw any conclusions based on my experiences, because of the atypical nature of my disease. For more information on chlamydia pneumonia, its links to MS, and the combination antibiotic protocol, please visit CPNhelp.org (click here).
Chronic Lyme disease (a tick borne infection) has also been implicated as a Multiple Sclerosis suspect. While quite controversial, some physicians and researchers claim that many cases of MS are in actuality misdiagnosed instances of chronic Lyme infection. It is known that the Lyme bug (B. burgdorferi) can attack the central nervous system, and can cause MS like lesions to show up on MRI scans. Some researchers have found evidence of B. burgdorferi in the spinal fluid and nerve tissue of MS patients, furthering the argument that at least some MS is actually Lyme disease. Standard tests for Lyme can often be inaccurate, and several specialized testing labs have developed protocols much more sensitive to detecting evidence of chronic Lyme infection in patients.
Like chlamydia pneumonia, chronic Lyme disease is treated with long-term antibiotics, in the case of Lyme often given intravenously. For info on Lyme disease misdiagnosed as MS, click here. For general info on Lyme disease, click here.
My personal take on this is that these different theories may in fact all be correct, for different subsets of the MS population. Given the heterogeneous nature of MS, I believe it's likely that what we call MS is probably a collection of related diseases that share common characteristics, each of which might respond to different treatments and therapies. The wide disparity in the effectiveness of current MS treatments from patient to patient could be explained by the fact that MS patients are not all suffering from precisely the same disease. MS is a complex beast, and it could very well be that infectious, genetic, toxic, and vascular issues all play a role in the Multiple Sclerosis spectrum. Unfortunately, there is still much to be learned...
What an excellent post and so good to be open minded.ReplyDelete
Interesting research recently released.
I come from a lyme disease perspective and note that several Lyme doctors say that all the patients they have seen with MS had Lyme disease so i guess that is quite likely to be a high number.
From my own experience I found some antibiotics worked much better than others.
Good luck in finding something that helps you.
Hi Marc, Good clear post, I ahve sent my doctor the link to the CPN website.ReplyDelete
Be interesting what she thinks of thgis info.
Thanks alot for resea reseaching this and presenting such clear information.
Have a good day today.
"The wide disparity in the effectiveness of current MS treatments from patient to patient could be explained by the fact that MS patients are not all suffering from precisely the same disease." Yes!ReplyDelete
Thanks for keeping us all up to date. I always check your blog for any "new" ideas on MS. And Because I enjoy reading it. The videos are great too. Please keep it up.ReplyDelete
Thanks Mark, for mentioning LDN. I am one of those who are benefitting from LDN, thank goodness. Yes, it might not work for all but with an estimated successrate of 70-90% people should be told about it. It's stopped the progression of my MS before I deteriorated too much. I was lucky.ReplyDelete
So thanks for letting your followers hear about it.
I do like reading your blog, thank you for it.
Thanks for the food for thought and links.ReplyDelete
Thank you, I recently found your site and already you have in a couple of entries summed up a year of my own lookings around. One interesting observation is the association between chlamidia pneumonia and atherosclerosis and the potential complications that could occur in combination w/ccsvi. I hope your treatment finds you well and with much deserved relief.ReplyDelete
Thank you for all your insights and up to date information. I have used LDN for 4 years now and the disease progression has been very very slow. Just wish I had known about LDN when I was diagnosed 2 years before when I could still walk some. I hope the Liberation research yields something for us. If you see me riding around on my scooter in Manhattan please shout out!ReplyDelete
spot on with the lyme info. My nero says i have CIS but i went to a LLMD and he says i have a classic case of Lyme disease. I dont know who to believe. My thoughts are a few months of antibotics are not going to hurt,so its worth a try.
Please look up Dr Garth Nicolson. Testing for the specific bacteria is very important. Antibiotic treatment protocals are different for mycoplasma.ReplyDelete
Food for thought- chronic bacterial infections including lyme and co-infections cause hypercoagulation. Does this cause your veins to go crazy? Some docs say if you have hypercoagulation that antibiotics are useless unless you use blood thinners.
I found your site yesterday and have enjoyed it. It has taken me years to put together the details, much of those I now find on your site. It could have saved me a lot of looking.ReplyDelete
I have also believed MS is a catchall for many similar disease variants that have different root causes and treatments effect differently. Until we get some ways for differentation, all treatments will show low rates of effectiveness. When we can treat similar cases we will find more effective solutions.
The LDN science page is helpful for explaining what it could be doing. http://www.ldnscience.org/ LDN has been great for me so far.
I'm still reading and love your writing. Forrest in SC
I want to very careful, my wife was just diagnosed with primary progressive M.S, I have used a very careful antibiotic regimen, and she declining very fast , now the Fatigue is gone, not more slide , We use higher dosage of azithromycin, along with Mino and metronidazole sequently, PLUS we use preventive acyclivor, that complettly dried up the Herpes simplex. Be carefull of kooks. Best wishesReplyDelete