Saturday, December 15, 2007

Trying Something New

I don't write much about MS because I choose to stay in denial about it. But the truth is, this last year has shown me that I really do have MS in spite of everything I do to slow its progression. The things I do are daily exercise (ideally), avoiding all processed foods (ideally), and taking supplements (ideally). Okay so I don't stick to everything 100% of the time, and I do cheat with lazy days and junk food, but for the most part I do pretty well.

I talk to people with MS who walk with canes and have a hard time speaking and seeing, and I see that I am incredibly lucky. I know that each person with MS is different when it comes to the progression of the disease, and I am very grateful that mine hasn't gotten as bad as it could get. Multiple Sclerosis is what it is, and it will progress no matter what method of treatment you use. I have a milder form of MS, so I believe I have more room to try different ways of treating it. Many say I am gambling with my health by refusing the medical treatments available today, but for me, it feels like more of a gamble to use treatments which only serve to weaken the immune system. MS is an autoimmune disorder, and it just makes logical sense to me to have a healthy immune system. So that's the approach I am taking. If it's a gamble, at least I feel well while gambling. I rarely get sick, in other words, and when I do I can usually fight it off without medical treatment. Not always, but usually.

With that being said, this year I have noticed more ongoing MS symptoms than I had before. My legs are often full of pain and stiffness, they go to sleep easily, and I am unable to walk as freely as I used to. Running is out of the question, although I can still trot! I am not at a point of using a cane, but I can easily see that coming. I can't walk down steps without hanging on for dear life. The house I am moving into (the Peer Wellness Center) is loaded with stairs, 4 flights total, so this has been a concern of mine.

When I first learned I had MS, I joined all kinds of online groups of people who have MS and I learned a lot from them. One group was called "Low Dose Naltrexone" (LDN), and they all decided to use LDN as their treatment approach. The anecdotal evidence was so compelling that I decided that if my MS ever got to the point that I really needed something else besides my current "Best Bet Diet" approach, that LDN was what I would try.

Naltrexone is an old drug prescribed 30 years ago to heroin addicts to block the brain's opiate receptors so that users couldn't get high. Needless to say, the heroin users didn't like it, so the drug became obsolete.

My therapist (who I don't see anymore) told me that Naltrexone could be used in people who self-injure so that they would HAVE to feel the pain in all its intensity, thus stopping them from self-injuring.

I thought, okay, another controlling torture drug. Chilling.

Anyway, not to get too off base here, Naltrexone was taken back then at 50 mg. It works much differently at lower dosages, one doctor discovered. He used it on his patients with AIDS. To learn more details than I can possibly write here, visit the Low Dose Naltrexone Homepage.

In a nutshell, your body produces natural endorphins at night while you are sleeping, and Naltrexone, taken at lower dosages (3 to 4.5 mgs), stops this process just enough for the body to decide it needs to release more natural endorphins to make up for the lack of them caused by the Naltrexone. More endorphins means stronger immune responses, which is something I didn't know before. This is why it works for many autoimmune disorders, and the BEST anecdotal evidence comes from people with MS.

This doctor has done some scientific studies as well, as the findings are always favorable. More studies need to be done, but because the drug companies would not profit in any way by bringing back this old, inexpensive drug, they aren't about to fund any studies. Instead they will continue to invest in keeping the current treatments for MS and other autoimmune disorders alive and prosperous (for them).

The doctors I have talked to about prescribing LDN are not aware of it enough to feel comfortable prescribing it. In other words, they don't have drug reps banging on their doors with abundant supplies of samples :grin:

So I am on my own for now in getting it. Without a prescription, however, along with a compounding pharmacy, I have to buy the pills from a Canadian pharmacy that doesn't require a prescription, and I can only get them in 50mg tablets.

And so I did. After playing mail tag with the post office for 2 weeks, I finally got the package yesterday.

I filled up a 50ml container with distilled water, dissolved the 50mg Naltrexone tablet in the water, then used a medicine dropper to take 3ml of the water. This dosage is equal to 3mg of Naltrexone. I can go up to 4.5 mg, but I am starting at 3 mg for now. If it works I will stay at that dosage. If it doesn't I will go up to 4.5mg. The LDN effect doesn't work if you take 5mg or above.

Last night was my first dosage. I am writing about it here so that anyone with MS can know once and for all if this is a viable option or not. We will learn together :o). It is supposed to be effective within 5 days of the first dose, but I swear I felt a difference this morning. I was able to climb down the stairs to the fitness room without hanging on to the rail! It may be a placebo effect, but the objective is to see improvement, which I did even if it was all in my head.

I will keep you posted.


GiannaKali said...

You're a goddess. I hope that the LDN works for you.

Funny thing, someone left a comment on my blog regarding my endometriosis which is sometimes considered autoimmune as well. They were talking about LDN for that too. I had never heard of it before.

I tried to do a bit of research but there was virtually nothing about it connected with endo.

Anyway, stick to your guns. I don't know virtually anything about MS, but I did have a friend with Lupus, another autoimmune disorder and I KNOW what they were doing for her was killing her. It was awful to watch.

Trust your instincts. You have suberb instincts.

Jayme said...

Thanks, Gianna. I hope my instincts continue to serve me! Endometriosis is listed on the The LDN Homepage It has no side effects to speak of, so it may be worth a try. Or you can just wait and see if it helps me before you try it. As hopeful as I am, I will be very honest about this whole experience even if the experience is a bad one.

MSlayer said...

My daughter, age 32, has MS. We have seen some remarkable relief of leg pain, weakness & muscle spasms with injectible Glutathione. Rather than continuing bi-weekly glutathione injections, she has achieved the same response by using 100% whey protein (from GNC), which is a good oral source of glutathione. She uses it in every morning dissolved in water, but you could use milk or coffee. Her walking and balance are very good. She has encometriosis as well, so I'll be interested in whether your LDN helps that issue. Keep taking care of yourself - it's the only way!

Jayme said...

mslayer, I had an iradologist tell me many years ago that I should be taking whey protein. I never did, and then when I got MS and got into supplements, I learned from the Best Bet Diet to avoid whey. I think I will try it, though. From everything I am reading, I just can't see how it can hurt -- and I suspect it will help a whole lot. Thank you for the recommendation. BTW, Gianna is the one with encometriosis, so maybe she will try LDN and let you know how well it works for her.

GiannaKali said...

I use a whey protein powder. It is not a source of glutathione, it is a cysteine delivery system that converts to glutathione. Taking oral glutathione is not absorbable. I use a product called Immunocal and I take 20 grams a day and it helps with my withdrawals quite a bit. It's a very good immune enhancer and it is a gentle detoxer as well.

It is expensive but it has gone through clinical trials and has been proven effective so I've been nervous about changing brands. You do need a whey protein that has been process in a particular fashion and frankly I'm not sure what that is right now anymore (i've forgotten)

I've also learned that supplements of NAC (N-Acetyl-Cysteine) raises glutathione too. Like the whey protein that delivers Cysteine, NAC is actually cysteine. If you don't want to use whey the NAC may work. It's simply an amino acid and I've also thought about trying that as it too is cheaper than Immunocal.

mslayer, can you tell me exactly what you use. I would love to find something cheaper.

Jayme, I checked out the LDN page. I want to know more. Not ready to go that route yet---but you know my pain is so horrible for three days a month I'll probably be seriously considering it my next period. Ugh.

Jayme said...

Immunocal is expensive! I would try it if it weren't for the cost. Maybe when it gets more mainstream. It looks like only one company sells it? Whey powder is something I may try, though. I know it has to be processed a certain way. I just read about it but already forgot. Oh well, I probably won't take on anything new until after I move. I'll keep you posted on the LDN. I'm very curious to know its effectiveness with PMS!

bipolarblast said...

Immunocal is whey protein powder....I get it cheap, but my source is about to go dry.

Anonymous said...

You are a woman of courage! ~ D

Anonymous said...

No side effects? How much do you understand about drug interactions in making this recommendation to someone? Look at the website that you refer to...

Jayme said...

Information from the LDN Homepage:

Can LDN be taken with other medications such as tranquilizers or chemotherapy? How about interactions with alcohol or tobacco?

LDN can be taken along with any other medication or substance, so long as it is not narcotic-containing. Naltrexone is a pure opioid antagonist and it will block the action of narcotics. Some examples of narcotic-containing drugs are Ultram, morphine, Percocet, Duragesic patch and any codeine-containing medication.

Can LDN be taken along with any of the standard medications for multiple sclerosis?

It can, and many people with MS do this. However, all of the standard MS drugs, with the probable exception of Copaxone, are immunosuppressant and thus tend to oppose the beneficial immune system upregulation induced by LDN. Therefore, many people with MS try to wean themselves away from these other medications when they find that they are doing well on LDN.

Anonymous said...

Hi Exactly as you say.