It's been awhile...and not so good news

Well, this blog was/is about LDN and honestly we had hopes for this drug that was so highly rated by individuals looking for alternate cures for MS and other debilitating diseases - BUT Ed ultimately had to go back to the nuerologist who prescribed him Copaxone, which seems to be fine. We started this blog with the idea that Ed's experiences with LDN would be great, but knowing that we wanted to be truthful about his experiences on it.
LDN was not a miracle drug for Ed, but we will continue to document his experiences for those who are following and are interested in the things that we do try out.
Thanks all!

MS and food allergies

Ed has had some fallbacks with his MS, a lot more numbness in his upper body and left arm. It is a huge disappointment. His thyroid functioning is very low and his latest blood tests have shown that he does have a severe intolerance to (hold on to your seats!) gluten, eggs, soy, dairy and corn. His doctor is not impressed with the effects LDN on Ed so far, and has told us that his Vitamin D levels are way too low as well, so he needs to take a supplement. We have both been very busy and stressed lately, but a break in that has allowed us to reassess the situation. Our latest plan of action, in order to maximize the effects of LDN (because it should be working better, and overall, has not caused any major relapses), is to change our diets back to where we were last year. Being that I have a high gluten intolerence, we had spent a lot of time finding wheat/gluten alternatives, but his diet has since strayed from my own gluten avoidance. Basically, the doctor recommends that he cut everything out that he is allergic to, as well as sugar. We have decided that he will do several salt water flushes, get back on the 'water cure,' which he has lapsed on, and go all natural with meats/fruits/veggies. At this point, there is no reason to not tend to the diet issue. I recently read an article that made a lot of sense and would recommend that anyone suffering from MS read it as well: http://www.chetday.com/msandfood.html . It is so very hard to follow a perfect diet, but we have avoided this topic overall lately. Ultimately, it may be the most important factor though. LDN is helpful to a lot of people, but if diet plays a major role in MS, then we are beating a dead horse by avoiding necessary dietary changes.
Ed did stop taking the thyroid meds for about a month after the last post, and his body fell into a bad state. Unfortunately, he was busy and failed to renew his prescription, so I am also thinking that his thyroid is upset...(as was I when I found out ;P). Regardless, he is back on the medication.

Good stuff...

So, Ed has been feeling great lately. He has not had any relapses and any lost feeling in his upper body from previous attacks seems to be returning. So far he has been on LDN for about 4 - 5 months (?), around there. Things definitely improved after he started taking the thyroid medication. Unfortunately, there is no way to judge whether or not he would have had an attack during this time period, but I think that the improvements so far are ultimately a really good sign.

Just because it has been awhile

As far as new LDN info., not much to say. Ed has not had any problems necessarily...he suffered a kidney infection recently, but considering he doesn't have the same feelings as someone with a 'beginning' infection, I think that it started earlier and spread to his kidneys. That, of course, is just a complication. He seems to be doing better after getting on thyroid meds and his doctor (who is a amazing) said that a thyroid dysfuction could really affect the outcome of LDN treatment, so treating his thyroid now (with synthroid) could increase the benefits of LDN. He played a full weekend of a sled hockey tournament at the beginning of December and felt great after all the exercise (go Blackhawks - they won the whole tournament!) He still has only been on LDN for about 4 months, but has no real relapses.
B

Interesting...

I read somewhere that thyroid dysfunction is common in people with MS, Ed has even been on thyroid meds before, but his blood test results showed some pretty big problems. While this is not a huge surprise because a lot of autoimmune diseases (lupus, Grave's) can be linked back to the thyroid, I am curious as to why this has not become an issue until 4 years after his initial attack. Regardless, Ed does not have CPN, and his blood tests showed low levels of allergy to pretty much every food category, but ultimately his thyroid functioning is off the charts (in lack of production of the thyroid hormone, otherwise known as hypothyroidism). LDN can apparently ease side-effects of hypothyroidism (though not proven so far), and the doctor prescribed a high dosage of thyroid medication (synthroid).
I guess the ultimate questions are whether or not the thyroid is the main source of Ed's MS attacks, and why he would suffer from a thyroid dysfuction. I have gotten the impression in some past research that this is a 'chicken or egg' matter in regards to whether or not thyroid problems are a cause, or rather a result of MS's effect on the body. Who knows, maybe the body just reacts that way after MS attacks for a purpose, or maybe it is an undefined side-effect of drug treatments so far. I would be interested in hearing whether or not anyone has an opinion about those thoughts.

Doctor appt.

Ed's appointment with his doctor is actually next wednesday (26th), so it will be another week before we know anything about his blood tests. Otherwise, I am optimistic about the fact that he has not had any relapses so far, and I look forward to tracking (hopefully) more progress in the next few months now that he has almost hit the three month mark on LDN.

4.5 mgs

The doctor upped the LDN dosage to 4.5 mg. Initially (from the beginning), my legs felt stronger, but lately it has been off and on - somedays I feel good and some days I don't. The higher dosage is giving me really strange and vivid dreams. I haven't had any 'relapses' or major issues. A couple weeks ago I was tested for food allergies and CPN (chlymadia pneunomiae - see www.cpnhelp.org). I will find out the results this week. I have also been looking into heavy metal poisoning as the origin of my MS. Regardless if LDN works great or not, we are still trying to find the actual cause of the disease.
-Ed

Latest

Ed missed two days of LDN over the weekend due to our failure to pick up the prescription in time (we have to either have it shipped or pick it up an hour away from our home). In the past few days, he has had more weakness in his legs, and some loss of sensation above his waist. From our research, LDN is best assessed at the three month mark or later, so we are going to wait to make any real judgments about the drug until then. We are not sure as to whether his current losses are a result of missed days, but we are going to have it automatically shipped every month in order to avoid that issue again!

Ed's thoughts

I don't have anything to report really, I feel better. I am back to standing and I have more energy. No relapses...

No News is Good News

So far, things are the same, but I wanted to keep updating our blog, so a little boring I guess! But, in my opinion, and in any case with MS, no news is good news. Ed has been off of Rebif for 3 weeks (and been on LDN) and has since only felt better. Time will tell, of course, whether there is any further progression (or if it stops) and whether or not he regains anything that has been lost so far.

Ed has been feeling really good, more energy, and suprisingly - so far - no side-effects from coming off of the rebif. His legs have been a lot stronger (while they were feeling really weak in the last few weeks on rebif). He has felt more energy too. His leg spasticity increased when he went up to 3mg of LDN (he started on 1.5 for a week), though that has also subsided. He is avidly doing the water cure, which has made a huge difference, and has strange, but manageable, dreams after he started on the LDN....

Ed has been on LDN for 1 1/2 weeks and off Rebif for 1 week. So far so good. He started the WC over two weeks ago.

LDN, the Water Cure and Multiple Sclerosis

My husband, Ed, suffered an acute Multiple Sclerosis attack in 2005 (at the age of 27), 4 months after our son was born, which left him paralyzed from the waist down. He received a firm diagnosis a few months later. While it appears to run in his family, we were told by neurologists at the Mayo Clinic in Minnesota that MS is NOT known to be hereditary, though I have heard otherwise. For example, a recent article published in Forbes Magazine claims that there are "two genes associated with autoimmune disorders, HLA-DR2 and HLA-DR4..." which are "found in 65% to 75% of all MS patients..." There are many theories on MS, but it seemed to us that the origins of this enigmatic disease will only be found at the end of a rainbow...

So, here we are, obviously not doctors, but people simply curious to find a solution other than the options that he has been given. After a few years on Rebif, and a few relapses, Ed informed me that his treatments were not working any longer. He was tired, and I knew that his lack of control over the situation was ultimately frustrating and saddening him. We had really tried a lot of things. As previously mentioned, we sat at the Mayo Clinic for several days only to be told that we should continue to "maintain" his state, meaning no more progression, and yet we still had no solution for that except pure chance and hope (faith even?)....

We tried acupuncture, vitamins/supplements, diets, reiki and even colonic-irrigation. (I was sooo ready to accept this procedure as an all encompassing solution to every disease/problem, that it would work miracles as people have claimed online, but unfortunately we were left $200 lighter with an uncomfortable experience and a silent car ride home.)

While we had done some previous research on Low Dose Naltrexone, we knew that he could not be on Rebif at the same time; the two drugs would counteract each other. The transition period would possibly leave him at risk for a major relapse. Months later though, it no longer seemed to matter. The current treatments were not working. I finally sat down and did more research on LDN, as well as "The Water Cure," which I had heard about several years ago. The testimonies seemed unreal. It appeared that everyone (and I mean every single testimony anywhere online) made claims that Naltrexone, FDA approved to treat heroin addiction - in low-doses - stops the progression of multiple sclerosis and, in many cases, helps sufferers regain lost functioning.

[If you have MS or another disease and are interested in LDN or the water cure, I recommend that you do your research and decide for yourself. This blog has two links on the side bar to start you out.]

It was difficult to find someone to prescribe LDN - though it has no side effects and apparently has a high success rate in halting the progression of MS - but we definitely found a doctor who is very enthusiastic. Neither one of his neurologists would get involved. He first began the 'Water Cure' and started the LDN once the prescription arrived in the mail.

Over the next few months/years/decades we will post his experiences with LDN and the "Water Cure." I strongly encourage you to visit the websites and decided for yourself if either one is right for you. While we found great information online about MS and LDN, we have not found anyone tracking their experience. MS is such a day to day thing, uncertain and scary as well, that we thought it would be a good idea to walk others through Ed's transitions by posting updates on a regular basis.

-Bridget Freeland