II'm no better but i'm no worse, that's a good thing. I already spoke with the pharmacist about upping my dosage in small increments. I'm gonna try it soon. My dh is also on Asacol and 10 mg of prednisone for the time being.

My 18 year old son does have Crohn's too. He's on Mercaptapurine and has been doing very well.

I just want to add that my 22 year old son is showing some symptoms of a gastro nature now too :(. He is vomiting about once a week for no reason, he has horrible bouts of heartburn like pain, he's getting ulcers in the back of his mouth. He does not want to go the gastroenterologist. I certainly understand why. I tried to explain it's not necessarily Crohn's but he is very reluctant after the he!! his dad brother have been through.

I'm trying very hard not to show how terrified I am. He still lives with us so I will just make the appt. And drag his skinny butt to the doctor.

No worse is great, Joelle, especially with all the stress you have had lately.:hug:

Geez, Joellelee! You must be starting to wonder about the water around there, eh?

Cherie

Good morning check-in.
 

It is a beautiful Spring Sunday morning. The temperature is going to be in the low seventies, and it is sunny and breezy. I am having one of those rare mornings where I can hardly wait to get started. I am going to have to ration my vigor, and my objective is to use up every ounce of energy I can muster without wearing myself out too early in the day. My trusty electric weed whacker is charging in the corner, and the flowerbeds could use some minor sprucing. I’ll lug my tools around the yard with me on my rollator, and I’ll take plenty of sit-down-and-stare-into-space breaks. Then it will be time for the event of the day (drum roll)! My trusty John Deere, super-charged, zero turn radius lawn mower waits in the shed. I usually save that “chore” for last, when my legs start to feel like clay. I’ll just hop on my steed and mow the heck out of the two acres of lawn we maintain. And when I start to tremor and stumble too much to be practical, I’ll retire to the garage – er - I mean the solarium, to pamper my achiness in the swim-spa. Ain’t life grand?

Thank you, LDN!

And guess what’s bloomin’ around here today –

http://i101.photobucket.com/albums/m...f/Flowers3.jpg

http://i101.photobucket.com/albums/m...f/Flowers4.jpg

http://i101.photobucket.com/albums/m...f/Flowers5.jpg
:)

Since this is an update thread I thought I’d let you know how my ambitious Sunday went. I hit the back yard around 11am. I puttered a bit in the flower garden and I pruned some of the Peonies whose blossoms were past prime. I loosened the dirt around the Impatiens, and I discovered that my trusty weed whacker isn’t as trusty as I had thought. I guess the battery doesn’t hold a charge any more.

It was beautifully breezy, but I was overheated in no time at all. By shortly after noontime I started to have reduced hearing in my right ear, which often is my first sign to take a chill. Long about then my sister visited, and we sat in the shade and gabbed for a couple of hours. My strength returned, so I started to mow the lawn with my fancy-shmancy rider mower. About half way through the job, we got a pop-up shower, so I moved headquarters back into the house.

Although I really didn’t even do a full hour of light yard work, considering my stare-into-space breaks, I felt all worn out. It just feels good to be useful and do at least a little “normal people” work. I never really do accomplish as much as I had intended, but that’s OK. With LDN I am just grateful for being able to muster enough ambition to enjoy a day like yesterday.

I am, too, so thankful for LDN. I'm starting to have some problems with the weather changes...my body doesn't like it.:mad: But I remember what it was like before LDN and, believe me, it's so much better going, with it's help.

It's gonna be a looooong Summer, but not nearly as bad as it could be..:)

I love hearing all your positive stories, but, your not so positive stories are also welcome...maybe we can help.

:grouphug:

I remember summers "pre-LDN". Not fun. They're still challenging but not as much as before. At least I can tolerate being inside in the cool A/C......before LDN I was just plain miserable whether I was inside and cool or outside and hot.

We have a "smog index" reading each day during the summer months along with the weather forecast. I've found that the dirtier the air outside is the harder time I have adjusting to the temperature changes. Maybe it just comes with getting older. :rolleyes:

I started LDN is the Winter, so this will be a new experience for me. Summer is not as bad as Winter, IMO.

Although, I never stayed out too long because I don't sweat. I get overheated very quickly. I rub cold water on my face, arms and legs to let it evaporate and cool me off. I wear a hat. I love hats.

In the Winter I can't get warm. I am always cold. Hands and feet are like ice blocks, and that is inside the house with socks and slippers on. :( I wear hats and gloves and bundle up. Too much clothes and hassle in the Winter. Then the ice and snow factor. Yikes!

Marion, it sounds like you are doing so well. Good for you.

joellelee, I am sorry to hear you and your family are having so many problems with your/their health. I hope the LDN starts kickin in soon for you. Feel better soon.

this will be my first summer since getting diagnosed last summer. so far i have noticed that high humidity does seem to slow me down a bit. i havent seen any real heat issues, persey yet,but we'll see.i did have a strange feeling while driving home from work yesterday though. i was sitting at a stoplight and the sunlight on the side of my face felt like the heat from a campfire.right there on my face. so i have notived that i do precieve heat and cold differently than i used to.

I prefer winter, since you can always bundle up and get warm. In the summer, even with A/C, you can't always escape the effects of the heat and humidity.

Daily LDN, Prozac and an asprin, once in awhile, helps a lot..:D

I do take an aspirin when I get over-heated too. Then I lay on the bed. Usually I fall right to sleep exhausted, so I am forced to take a nap.

My face and neck gets red, like children do when they are running or playing in the hot weather. Only I am just out in it.:(

Interesting reading of anothers' experience with LDN:

http://ms.about.com/b/2009/06/03/jul...th-15.htm?nl=1

Anyone else take an LDN survey from Skip's?
 

Skip's Pharmacy just called and wanted me to take a 5 min. survey. I never do surveys, but I made an exception for this one.

He asked the kinds of questions you would expect, with one of the first being "Why are you taking LDN?" When I said MS, he asked if I had been diagnosed by a doctor. Instead of being True/False, the choices were "Consistent" or "Transient."

My response to what improvements I've experienced was that I have more "stamina" and more "clarity of thought." He asked if an MRI had shown any improvements since taking LDN, but I haven't had an MRI since last August when I began. He also asked if I had been able to reduce or discontinue any meds since LDN. I said yes (ADs) and he asked which one.

When it was finished, I asked what the info would be used for, but he didn't know.

Any thoughts on where this survey might lead?

Skip does these kinds of surveys periodically and he takes a big part in the LDN Symposium every year. I think it's in June or July. so he's probably gathering info.

Thanks for taking part..:hug:

LDN check-in.

Hi All,
I went to my MS Specialist last week for my regular check-up. Again, she was very surprised at how many improvements since the last visit. She gave me a very long exam, with lots of testing, and said, "You are making me a believer in LDN."

She does not prescribe it for me, so I didn't ask her for a script. Let her keep tracking me and one day she will prescribe it to whomever asks for it. :)

I get it from my PCP. The MS doctor had her nurse call him, to ask him to write it for me. She only does the DMD's.

I was thinking. I bet someday they will come out with a drug, so similar to LDN for a MS treatment drug, and charge a high price for it.

We know there is no money to be made with LDN for the researchers. So if they change one ingredient or add something to it, they can get it to clinical trials and get it FDA approved for MS. :D
Just my late night thinking. :hug:

I've thought about that too, Lady. I even wondered at one point if I should be telling people about this stuff, in case someone catches on and finds a way to charge $50K a yr for it ... :)

My MS Specialist just says "I guess I'll see you next year then ...". I have to be her easiest patient.

I am thrilled that it's worked out so well for you, especially so far into the disease process. I know you were very nervous with all the other medical issues you had to contend with . . . but I haven't really run into anyone that has had any problems from LDN. I always think about potentially steering even one person wrong though ... even now.

They should just put it in the water supply, don't you think? ;)

Cherie

Put it in the drinking water? Nah! I think I would buy a bottle of water though, if it had LDN in it. Good idea, ya think? Bottled water, by the case, at your local supermarket. No prescription necessary.
Cure whatever ails ya.:D

Seriously, I am also very happy. :) I laugh at jokes and TV shows, and always have smile on my face. I find myself humming or singing too. I guess because I am happy for the improvements.

I am feeling so much better, and lots of residual stuff is gone too. It sure makes me wonder why I was skeptical to try it, and then took so much time to research it, that I thought I waited too long for it to work for me.

Now, six months down the road, and it seems to be helping more each week. Still on 3.0 mg. It seems to be just right for me.

While talking to the Neuro I was telling her about some symptoms I had when I was 16 years old. She said, they could have been MS symptoms back then. I never thought about that. In my early twenties maybe, but not as a teen I thought. I guess I'll never know that answer. :confused:

As a kid I had plenty of sunshine, lots of fish, cod liver oil every morning (icky!) veggies and fresh foods but I was sickly. I caught every childhood disease, so had plenty of anti-bodies to illnesses built up. Hmm I had allergies too.

So I can see my body getting overactive, and still attacking itself, even when the illness was gone. Autoimmunity to inflammatory.

I've been able to go back to about 19 yrs old with my symptoms, and according to my daughter's neurologist, if the same thing happened now, they would have dx me (at least "probable) on that basis. I don't believe that, knowing what others STILL go through to get the dx ... but it definitely would have been confirmed at age 31 if I had let them test me. I didn't see the point in knowing though as there were no drugs available to help anyway, and I could still work.

I have a ton of allergies too, with lots of sinus problems, bacterial infections, Ulcerative Colitis, and a problem with processing calcium. On that basis, I'm glad (and kinda' surprised) LDN worked for us, cause I really thought I'd have trouble with this med too.

Cherie

I think you've hit the magic nail, right on the head. And now, LDN, by getting our endorphine count up to normal and thus helping to correct our faulty immune systems, has, hopefully, stopped that process.:) Too late to go back and wipe out permanent damage, but stopping MS from getting so much worse, for us SPMSers and all, is good......for now......

well here i am, 9 months on LDN and i havent grown that extra limb or that third eyeball.if there are any 'hidden side effects' i havent come across them yet. all i know is that i was diagnosed with MS 8/20/08, i was on a walker and couldnt make it more than 4 hours without a nap. between 7/22/08 and 8/26/08 the MRIs showed some progression of a big liesion in the CC area.and then i started LDN 9/10/08.from 8/26 to 12/30/08 .....no progression at all.
its not all cherries and whipped cream though. i still have my days where i get tired pretty easy,i still have my moments of 'genious'. but to tell you the truth, i would hate to see what it would be like without the LDN.

I love your reports, Flute. I'm so happy that things are going relatively well for you..:hug:

Me, too, Flute! I'd hate to see what kind of shape I'd be in were it not for LDN. I was on Copaxone and then Betaseron and couldn't take either. And, at this point, I'm kind of glad, because I think LDN has proven to work better than either of those DMD's.

Why does everyone (doctor's included) think treatment has to be expensive, have horrible side effects, and be painful??? Sometimes the most obvious solution is the easiest one. ;)

i ran into one of my past adopters at the shelter today. when she adopted her dog a few months ago i had told her about the LDN for her UC and she was pretty thrilled to hear about it. she was telling me how she went straight home with the yorkie she had just adopted and with the laptop on one side and her dog on the other she scoured the ldninfo web page.read every word on every link. shes doing so much better on the LDN than she did on her conventional meds that her Dr is wondering if she really had UC to begin with.while she was telling me this story one of our voulenteers over heard what we were talking about andin going to look into LDN for her chronic fatigue.i think that makes about 6 people ive gotten to about LDN

Way to "play it forward", flute.

I have Ulcerative Colitis too, so I was hoping to get that added benefit. I haven't had any full blown UC attacks since going on, and I used to get them in clusters usually once a year.

I have found that if I start to get the UC pains (which I have still had a few times, even while on LDN), I can heed off the "attack" by using 2 Advil right away. That used to stop the imminent attack in it's tracks, but often the underlying condition still plagued me and I would have to use sulfa drugs to control it. I haven't used the sulfa drugs once since LDN.

So .... what did the Yorkie have to do with the story? :p;)

Cherie

Hey, the Yorkie was the inspiration..:D

Don't Double Up and Don't Skip Doses
 

Low dose naltrexone is different than the other disease-modifying therapies. The CRAB drugs (Copaxone, Rebif, Avonex and Betaseron) are long-acting immunomodulating drugs. Naltrexone is not. Naltrexone has the mechanism of blocking opioid receptors and (probably) stimulating the release of endorphins, which happens shortly after it is taken. What this means is that there are distinct immediate effects of Naltrexone that we can feel, mostly in the quality of our sleep and in unusually lucid dreams.


http://ms.about.com/b/2009/06/23/jul...doses.htm?nl=1

I missed taking my LDN for two nights in a row. It won’t happen again, since I now have an alarm clock set to go off every night at 9pm. Not that I’d do it on purpose, but I don’t think it is a bad thing to be reminded what life was like before LDN. I ache, ache, ACHE. I need my rollator. My tremors are out of control. How easily one forgets.

Marion, What were you thinking about? Hmm :hug:

It must have been a very good time you were having. Or were you just day dreaming time away? :) Were you out partying?-- and then you forgot to take your LDN?

So far I have been lucky. I haven't forgotten to take the LDN, but I do vary the times I take it. I remember to take it, but it is too early,:cool: or I get on the net and my goodness how fast the time flies.

Then I scurry around to get it, and take my food and coffee with it. :rolleyes: I can have coffee all day and night, even before bed, in case you wondered about that statement.

10 to 15 cups a day. It is instant, btw. I am not sure if stronger, drip coffee would keep me up, but instant doesn't, and it's leaded, not unleaded. Strong, drip coffee hurts my tummy most of the time.

Oh, and I'm addicted to chocolate too.:D Yummy

Marion I guess the alarm clock is a good idea. But what if you are out? What do you do then?

If I am out, when I come home I'll find the alarm clock beeping away. That'll remind me no matter what time "before bedtime" is.

How have you been doing otherwise on LDN, Marion?

Glad you figured out a future gameplan.

Cherie

I have to put my meds in a little Monday - Sunday pill dispenser. I hated buying it but soon got over that once I realized that I didn't have to worry about missing or duplicating a dose.

I've never forgotten to take my LDN. Now, my thyroid or HBP meds are another story. Thyroid must be taken first thing in the AM and for some reason I just cannot seem to remember to do that. I finally put my HBP med with my LDN and take those at night. :rolleyes:

I've been tempted to not take my LDN for a couple of nights just to see what the effect would be on me but I'm too chicken!! :o I don't want to go back to the way I felt "pre-LDN"!!

Other than that, Cherie, I have been doing really well. The heat knocks me out now and then, but that is to be expected. My cataract surgery will be on Tuesday, so I have been really careful with my diet and exercise. I did take my LDN last night, and the pain with movement has let up a bit. I guess it’ll take a few days to catch up with all the benefits.

Thanks for asking. :hug:

I loves my LDN...:yahoo::Trapeze 2::trampoline::Heart::Tip-Hat::Head-Spin::Thanx:

There's a lady I know, a mother from my daughter's ball team, and she had gotten a rx for LDN months ago from her neuro. She decided to try naturalpathic options first for about 6 months (combined with Rebif), and when those didn't seem to help, she went with the LDN (+Rebif).

Lately I've heard of a number of people using the interferons with LDN, but I know that Dr B didn't recommend it. They did that small 2007 trial in San Fran that didn't seem to indicate a contradiction, so maybe that's why some doctors (and hence myself as well) are thinking it might be ok.

She started out at 1.5mg because she is very sensitive to most meds, and has other very troubling (maybe MS-related) health issues; bowels, stomach, bladder, etc.

The first thing she noticed is that her tongue was tingling, and of course that made her nervous. I suggested it might be the "awakening of nerves", but she was afraid it was an allergic reaction (she is on liquid, no fillers). Then she noticed the spasticity increase, and that made her afraid she was headed into an attack. Due to the mouth reaction, I suggested she cut down to .5mg to start because if it was an allergic reaction, she should continue to get that reaction even on a smaller dose.

My pharmacy checked into allergic reactions to Naltrexone, and found absolutely nothing on that if the drug is PURE naltrexone. The tingling in her mouth stopped, but the spasticity/weakness continued. In the end, she decided to go off LDN for a bit and see what happened when that occurred. Nothing much changed for the worse or better, except the same spasticity/weakness.

She contacted Skip and he advised she should not use Rebif while on LDN. I was actually a little surprised that is still the recommendation, given the short/small trial that showed there appeared to be no safety issue. Also, so many neuro's seem to be rxing it to those on interferons now, and most seem to be still getting benefit from LDN with that combo.

Anyway, this wasn't a success story, YET anyway (she is going off Rebif in the new year and wants to try LDN again), but I wanted to post it because it is a reminder that:

- maybe interferons shouldn't be used with LDN
- people need to be aware that side-effects or "awakening" may occur in the early days/weeks, but not to be too frightened of that
- ultimately LDN might not work out so well with some patients

Cherie

If I were going to try LDN I'd go off all Interferon medications first. That's just me. I didn't have a good experience with Interferons and won't go back on them again. Ever.

I would think that you really couldn't tell if LDN worked for you or not when combining it with Interferons. :confused:

How is everyone doing? This thread got so quiet...............:confused:

I have finally recovered from missing my LDN dose for two nights in a row. It is amazing how fast the symptoms come back. I am also recovering from my cataract surgery, which gave me a really rough time. I had an inflamitory response to something used in the procedure within my eye after the first surgery. Two additional surgeries later I am feeling, if not seeing, better. I am told that my vision will improve with time. It better, because right now I can’t see out of that eye worth you-know-what. It has been a rough week or so. Next week I will attend a weeklong photography workshop. If that doesn’t kill me, I don’t know what will. I’m going to try to take it slow and easy. That should keep me out of trouble for a while.

I'm doing hunky peachy, Kell, thanks for asking.

Sorry about the eye troubles, Marion, but glad you are back up - on LDN..:hug:

I have a question? I know we've talked about healing from an injury or illness sooner, with LDN. I just looked at an injury on my hand that was sore and bleeding one day and healed over the next day..:eek: That was lightening speed. And another thing I've been noticing is, that my moles that had been on my body for years, are disappearing.

I didn't notice this so much in the beginning with LDN, but I've been on it for over six years now and I am seeing more of this healing stuff.

On the other hand, I still have Psyoriosis on the palms of my hands, although much better this year than it has ever been.

Has anyone else noticed these miraculous healings??

Sally, I have noticed healing faster from cuts and minor injuries (scrapes, burns). I haven't noticed any moles disappearing but I haven't been on LDN as long as you have. I got a paper cut on my finger (yowch!:eek:) and it had almost healed completely 2 days later.

The one thing that has always been consistent for me while taking LDN is that my hair and nails grow like crazy! I've never had such strong, long nails in my life! And my hair is thicker and grows much faster (not necessarily a great thing but, oh well....:rolleyes:).

Oh yeah, the hair and nails thing. I keep my hair on the short side (easier to take care of) and I have to trim it constantly, it seems....my bangs keep growing over my eyes..:D. I try to keep my nails shorter too and that seems almost impossible..:eek:

At my age, especially, this seems unreal..:cool: