First the Basics: LDN 101

"LDN" (low dose naltrexone) is an "alternative" medication used with surprising success in treating immune disorders, both autoimmune and immune deficient. Taken orally at bedtime, LDN works by briefly blocking opiate receptors, thereby "tricking" the body into increasing endorphin production. Endorphins being a central part of the immune system, increasing their production has been shown to help correct immune defects.

3/21/11

About Herpes and MS

First, a quick update. It's late March, 2011 and I'm still doing really well, and of course still taking LDN, 4.5 Mg at bedtime. 
FYI, I'm still getting it via Priority Mail from The Compounder Pharmacy in Aurora, Illinois, but there are other trusted pharmacies who have a good track record of compounding LDN properly. There is at least one very good compounding pharmacy here in Austin, Texas, too, but when I asked, they didn't seem aware of the importance of using the correct binder with the Naltrexone, so I stuck with The Compounder; . It costs me a little over $1 per day including delivery; compare that to the cost of the "conventional" treatments!

The only other "medications" I take (relevant to my MS) are supplements, except for Amantadine, all
prescribed (or at least suggested) by my oto-neurologist, who believes strongly that herpes is the viral component involved in MS and in chronic inner ear conditions. And I'm doing so well that for the last year, I've only been seeing him every 6 months, to do follow-up testing to reassess my chronic inner ear issues (which are much better), and to maintain my prescription for LDN.

About herpes: While MS is still one of the more mysterious and unpredictable diseases around, most experts agree that there is an important, non-contagious viral component to MS, and many believe that we (MS patients) have a particular vulnerability to herpes infections.

I've never had Herpes I or II, but like many MS patients, I've had a lot of other herpes infections....

To start with, as a baby I had herpes angina, aka herpangina (basically, shingles on the inside of the mouth and throat, very painful); later in life I had it again as well as "regular" shingles (herpes zoster). As a child, I also had chicken pox (but everybody got that before the vaccine), an extraordinarily bad case of mononucleosis (with a severe relapse that was misdiagnosed as Hodgkins Disease), and pityriasis rosea (a relatively unimportant, self-limiting rash, believed to be caused by herpes VI).

Then, as an adult, like most MS patients, I tested positive for the Epstein-Barr virus (herpes IV), and there's my chronic labyrinthitis, which as I said my doc believes is also from herpes, probably herpes VI.

For these reasons, my neurologist, who is very much into Complementary and Alternative Medicine, has me on anti-virals. I used to take Valtrex, which works well, but that was when I worked in a family doc's office and had access to free samples; I can't afford to buy it. I've also been on Acyclovir and Amantadine, now just Amantadine.

Some of the supplements are pretty specialized, like "Neuro-transmitter Support" and "Neuro-Immune Infection Control". Others are generally supportive or immune-supportive, like CoQ10, DHEA, anti-oxidant blend, EPA & DHA, Bio-C complex, etc. (I'm only listing this stuff because I know from experience that people will ask, but I'm not suggesting you take any of it.)

For the last few years, I've been doing so well that I've rarely even thought about having MS anymore, although I realize that it could change; I know that, statistically, I'll probably develop Secondary Progressive MS someday, but I'll jump off that bridge when I come to it. For now, I don't really do MS; its been years since I searched the internet daily for MS news. I'm only updating this now so people won't assume that I died or something!

I turned 60 this year and am hangin' in there just fine. I always hope to hear more about LDN being tested and available, but since no one has a vested financial interest in it I'm not holding my breath....

Well, I guess that's more than enough verbiage from me. While there is no way for me to guess what the course of my disease would have been had I stayed on the conventional treatments, I have no doubt that LDN has made a positive difference for me, and that, at the very least, it's completely harmless. If you have MS, I hope you get a chance to try LDN. Like I've said before, I wish I'd tried it sooner, and that I'd never tried the other stuff....

6 comments:

Jo said...

I have been diagnosed with MS in 2004.
I am very interested in your ear problems. My 21 year old son has been dealing with severe tinnitus. Many doctors and tests have not helped. Would love to discuss this with you.

flora68 said...

Hi, Jo:)

I'm sorry to say that I probably don't know any more about tinnitus than you and your son have learned by now; my stepmother had it her whole adult life and never got it to go away, but she only went to the family doctor for it, and she passed away over 10 years ago anyway, so there may have been significant advances since then.

Did you know that people who've been using cell phones for over 4 years have a 50% greater chance of developing tinnitus? That tells me that MANY more people WILL BE suffering from it, and the increased attention to the symptom should lead to more advances.

Anyway, I've been looking into it for you today and found some interesting links.

First, there was a study published just last month linking some cases of tinnitus with a problem with neurotransmitter functioning in the brain. I'll paste two links to info on that; first the medical journal article link, followed by a summary in Consumer Reports that's more understandable to the layman.

1. (The Journal Article link)
http://www.pnas.org/content/early/2011/04/15/1100223108.abstract?sid=cec3b4c5-f845-%20422d-b87d-b5379bab272e

2. (The Consumer Reports link) http://news.consumerreports.org/health/2011/04/researchers-say-the-may-have-found-the-cause-of-tinnitus.html

I mention the neurotransmitter issue because my otoneurologist has had ME taking something called "Advanced Neurotransmitter Support" for my chronic inner ear issues for the last two years or so, and while it took time, it's definitely helped me and might, MIGHT be worth trying for tinnitus. It's OTC and can be ordered from this site:

http://www.neurobiologix.com/product_p/37.htm

Another site of general interest re: tinnitus is found on a physician's blog, and sums up tinnitus both from a physician's and patient's viewpoint, giving a pretty good summary of what the patient goes through with chronic tinnitus and what the blogging doc feels doctors should be doing to help. POSSIBLY it could be helpful to you.

http://www.kevinmd.com/blog/2010/11/tinnitus-highlights-poor-doctor-patient-communication.html

That's all I've learned today, but maybe something in there will help. I sympathize with your son, and with you; I had tinnitus only briefly and didn't enjoy it at all. Hang in there!

Sarah said...

Flora - I'm so happy to see this post. Are you in Austin TX? I am here. I am 30 and diagnosed with MS when I was 18. I just started Rebif a few months ago and it makes me feel horrible. I am having a hard time finding a neuro to prescribe LDN. Can you point me in the right direction? I want to get off this rebif and start LDN but my neuro wouldn't hear of it....:( Any direction you could give me ould be so appreciated!! Thank you!!
Sarah

Sarah said...

Hi Flora - I am in Austin Tx as well and having troubles finding a neuro to prescribe LDN. I am 30 and was diagnosed when I was 18. I am on rebif - I started it just a few months ago and i don't like it at all. I gotta get my hands on this LDN that i keep reading about. Can you point me in the right direction? I saw you get it from the compounder pharmacy but who prescribes it for you? Thanks so much!!

Sarah

flora68 said...

Hi Sarah:) You might try NeuroSensory Centers of America, specifically NeuroSensory Centers of Austin, which is on a little road that's WAY out Bee Caves Road. Here's the contact info; good luck! Both doctors are very nice.
NeuroSensory Center of Austin
Kendal Lance Stewart, M.D, or
Wallace E. Taylor, Jr., M.D.,
300 Beardsley Lane, Suite D-101
Austin, TX 78746
Phone: (512)338-9840
Fax: (512)338-0863

The Patients Voice said...

Low-dose naltrexone has been suggested as a treatment for multiple sclerosis, Crohn’s disease and fibromyalgia. However for many LDN is still seen as very controversial. The Patient Experience is running a research blog to find our your views on LDN and its value! Please drop round and tell your story!

http://www.patient-experience.com/index.php/low-dose-naltrexone-a-research-blog-for-patients-and-caregivers/