Hi Lady..:Wave-Hello:, nice to see you here... I've missed you..:hug:

Knowing Larry, he probably told you to get 1.5mg increments so you could go up gradually, which is what a lot of peeps do now. I started at 3mgs 6 years ago and am now on 4.5mg for the last 4 yrs. 1.5 doesn't do much, so, as soon as your body accepts the 1.5 get on up to 3mg.

I can't wait to see how you do on it. Don't expect miracles, but, I think you will feel better and slow any further progression of this carpy disease.

Good luck, Sweety and report in, often.

:hug:

Nice to "meet" you Lady!

Twink - I hope your dad starts to do better, and Sally...glad to hear that your setback was temporary.

I had a friend with MS call me today...she is ready to try out the LDN. She's really having a lot of troubles and I pray it helps her out.

I'm holding up...a little bit of trouble with my eye aching today and I'm fighting a cold. I'm stepping up the Vitamin C and staying indoors. We are having very unusual weather today...it's snowing! The kids are outside having snowball fights. We don't see this very often here.

Back to the unpacking. :rolleyes:

Thanks for the Welcome and for wishing me luck on LDN.:hug:

Sally, yes you are correct. Larry gave me the start-up dosage info, 1.5 mg in three capsules to equal 4.5 mg. I can up the dosage as I get used to it.

He knows I have allergies to some foods, fillers and drugs. Also I have a sensitivity to many other drugs and the *other" crapola they add to preserve or make things taste better.

I sure wish they would go back to natural ingredients, like way back when. You know, when a Twinkie had real milk, cream, sugar, and vanilla. Not a list a mile long of things we never heard of and don't need, ya know? Just so it will last two months, instead of a week.:rolleyes:

I missed you too Sally, and all your fun antics. You always cracked me up. Then there was the serious side, some sad issues, and also the caring and warmth you showed to all on the old forum. :You-Rock:

Cherie, thank you too. We have spoken more recently. You are great with your links and answers to the many questions on a few of the boards. Where do you find the time? Great info and links btw. :Clever:

Kitty, my Neuro is very conservative. She surprised the heck out of me. She had been thinking of TY or Blue goo but changed her mind. Typical woman. Lol I think she called a MS clinic director, in our area, and he said try it on me. Maybe they are doing their own little mini trial, who knows. :)

Hi mom2five, nice to meet you too. Is Utah a new place for you to live? You said you were unpacking.

Flutemaker, you are funny with that LDN story. My Neuro suggested it, but thought is was not legal to prescribe, so passed the buck to my PCP, IMO. Go figure. Love your boxer doggie.

Sally, you have a new puppy now?

I have a question or a hundred. You take the LDN at bedtime, but do you take it with food or drink? Also I go to bed at 2 to 3 am. Late to bed, late to rise, unless I have an early doctors appointment. I hate when that happens. :winky: Do I still take it at bedtime?

So confused and I tend to ramble. I must be getting antsy to start tonight. It just came in the mail. :yahoo:
Lady

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No, The signature is not my doggy...I still have my ShihTzu "Pal"...The white doggy, I used as my avatar at the "other place".

Take your LDN at bedtime, but before 3am. I'm a late to bedder too and I usually take mine at midnight.

:hug:

I remember your ShihTzu Pal, and his picture. I'm glad he is still your best bud.

Thanks for answering so fast Sally. I will start tonight.:)

With food or water or any liquid?
Lady

I too have lots of allergies and sensitivities, and it's one of the reasons I went with Naltrexone compounded into a liquid (with distilled water and flavoring ONLY). Liquid is more hassle because it needs to be kept refrigerated, but it takes care of the "filler" problem. If you find you have problems with the LDN fillers, you can change to this method too. :)

Thank you, Lady. I seem to get involved in the same ole' topics most of the time, and I do a lot of research (and/or have personal experience) on those areas of interest. I keep links so that I don't need to re-research them . . . then I just wait for the convo to come up again. I cheat. :)

I read that we should take it with a glass of water, and I didn't for the first few weeks. I was getting nausea until I started DOWNING a glass of water with it. Once I adapted to the med, I stopped doing the water again (couple of months).

Cherie

Cherie,
Thank you!
My regular Pharmacy was going to give me the liquid reversion of LDN, but the flavoring in it I could not take. They had a few choices. They let me read the inserts. They use them for kids cough meds to taste better when doing liquid compounding for a doctors script. Like add a decongestant, expectorant, cough suppressant, etc., then the flavor or it would be yucky and kids wouldn't take it. Better than OTC for special kids disorders.

But they are not equipped to do the sterile compounding, with large labs and machines, that is necessary for power compounding to capsules. Most Pharmacies can do liquids. Mine never heard of LDN, so that scared me. They would be doing it by crushing a 50 mg tablet or two. I assume Skip buys powder in bulk. Same with liquid.

I will drink water or tea and a few cookies. Tee hee;)
Thanks,
Lady

You don't want to use a place that crushes the pills if you can avoid it. Skip uses the pure drug and adds some fillers to make up the capsules, but the fillers he uses are usually quite tolerable by most people.

My pharmacy buys the pure powder too, so I get no fillers at all in the liquid. He is a large drug "compounder", so he buys in bulk and has lots of experience with LDN. I would have gone with Skip, actually, but I am not organized enough to order in time (so that it is sure to cross the border/get through customs, etc. before my rx is up). As it is, my pharmacy is usually running around at the last minute, trying to accommodate my lack of planning. :rolleyes:

The flavoring my guy uses is a combination of Tootie Fruity and Raspberry. We tried a couple of other flavors when he ran out, but they did not work as well with Naltrexone. :confused: The pharmacist said using the right flavoring might be as important as using the right fillers (not too slow release, etc.) . . . so, if you need to go the liquid route later, maybe your pharmacy can call my guy to get the right combo. I know that either of those (or both combined) works though ...

Cherie

i got lucky though, i caught on to the whole LDN idea early on after my DX. and tried it first before any of the crab drugs. it just made sense to me.
does LDN guarentee a stop to the illness? no. but neither do the crab drugs. does LDN guarentee a stop to exascerbations? no. but niether do the crab drugs.
does LDN guarentee anything? no. but niether do the crab drugs.
as long as its a matter of 6 of one-half dozen of another, why not make the 'another' one that i can actually afford and relisticly pay for?
i really am a stingy individual, but i dont see what good a medicine like copaxone is to someone who cant even pay for it.

did you want a new puppy sally? come on down to the shelter, i can set you up
this is my new puppy

Wanted to clarify that I don't think flavoring has anything to do with the speed of release of the drug, just that apparently it does make some difference for efficacy. Both times that I tried other flavoring (banana and bubble gum, if I remember correctly), my symptoms were creeping back in. As soon as he got the right flavoring in, he replaced my rx with the Tootie Fruity/Raspberry, no charge.

I didn't try any other meds before LDN either, but I was 14+ yrs into the disease before I tried anything (not even steroids). There were several reasons I went that route:

- my neuro said the CRABs weren't likely to help my "type" of MS (mostly large spinal lesions, very few brain one's even that long into the disease)
- sensitivities/allergies to meds
- CRAB efficacy stats were not convincing to me
- report side-effects on the CRABs
- cost
- anecdotal evidence on LDN

I won't ever regret not trying anything else, but that is because I have been lucky that LDN has worked as well as I could hope for with any med. I do understand why neuro's recommend the mainstream meds first though, and I probably would too if I were in their position. Actually, I'd probably recommend Copaxone and LDN first. :D

Cherie

What a sweet doggy, you have...I don't need a puppy right now, but when I do, I will need an already trained, adult small doggy. I am unable to train a new pup..:(

Are you talking the Dayton/Kettering area?

i work at sicsa you nut.

ive got an MRI on thursday so i probably wont be in to work but ill be there about 1pm friday. we have a 5 year old long haired chicuahua right now named cody. he went up for adoption today.hes the only small breed dog we have right now, but we have connections with the ARC and the HSGD, plus we have new dogs comming in almost every day

A question...
 

We have been in Utah for 3 1/2 years. We are down south in the desert part of Utah...almost to Las Vegas...and we love it. We moved to a home about 5 miles from our previous home, so my teenagers didn't have to switch schools. The two in Elementary school had to change, but 1st and 2nd graders adapt very quickly.

I received my LDN only a week or two before the move. I don't know if I would have gotten through this move as well as I have without it. :)

I have a question for all of you...Has anyone had troubles with early morning headaches on the LDN? If so, do you think it was the LDN or something else?

I know that MS and sinus infections cause headaches, but I don't recall any that I could credit to LDN. :)

i cant blame my headaches on the LDN, ive had those for years

the MRI has been moved to teusday, so i'll be at work on time thursday.....1-6

I need some help. I had pain in my calves before but now it feels like two knots on each calf and I can barely walk. Has anyone has this problem. I may have to stop the ldn if thats the problem. I'm going to call Dr. Skip and see what he says.

How long have you been on 3.5 mg consistently now, and when did the knots start? Are the knots a daily thing, or intermittent? You are SPMS, right?

I do think it is a good idea that you talk to Skip. I know a handful of people go through 2 - 3 of months of side-effects (kinda' like "re-wiring"), but I think my concern would be whether this is a new symptom for you. If this is spasticity, have you had that before?

Are you stretching daily, with a routine?

Cherie

Hi jnet1589,
Nice to meet you.

I have had pains in my calves, I call them Charlie Horse like pains. I had them prior to the LDN, which I only started two days ago at 1.5 mg.

When I don't walk enough, and then go shopping and do a lot of walking, I get them. If I am sleeping and stretch to hard the leg, I have to jump out of bed with the cramp.

Sometimes it is lack of salt or potassium in the diet. Others get it from lack of calcium and carbs. I also get toe cramps when I walk too much after being lazy and not moving enough. They really hurt.:eek:

Maybe these ideas will help you. Your calves aren't hot, red or swollen are they? Must watch out for blood clots or DVT at anytime you have leg pain.

I would call the doctor if it was something new for you. Good luck
Lady


.

mom2five,
I have had headaches in the front of my head, that may last for two hours, when I first get up in the morning. Maybe once a week now. After my caffeine, fix it goes away. :)

When I was having 4 exacerbations a year, one overlapping the other, I had them daily for years. I blame MS for these. That is unless I know I have a sinus infection, which is pretty obvious. Then I need a Anti-B.

I have only just has my third LDN pill tonight, still at 1.5 mg only, until I get used to it and find I don't have any bad reactions. Then I will double it. I am keeping a journal for each day.

So far my DH just said I haven't been snoring for two days. I find I wake up a second or two and go right back to sleep. This happens a few times, weird? I am not sure if it is connected.
Lady

PS: You have been so busy and with 5 kiddies that's a lot of work. Your weather changed also, so maybe it is a pressure headache.

My ENT doctor said to hold both nostrils closed and blow. The both ears should pop, and change the barometric pressure in the sinus area that has too much of a vacuum-like pressure effect. Your ears normally pop abut 100 times a day by themselves. Like when eating, chewing, swallowing, talking or yawning, etc. Doing this sometimes clears the headache in minutes. Amazing.
Lady


.

Yes, I did have headaches for the first several weeks on LDN. I don't remember how long that side-effect lasted, or if the headaches were only in the morning, but I do remember having them. They started when I started on LDN though . . .

Eventually they just let up. :)

I am a light sleeper (even before LDN), and since LDN, I need much less sleep at one time. The first few days on 3.0mg, I don't think I got more than about 4 hrs sleep at night, but I still felt great the next day. :cool: I still need my afternoon nap most days though . . .

Cherie

See message below I goofed lol

Dr. Skip said to go down on the LDN for a while then go back up on it and see if that helps. I have some potassum so I will try that also. What is DVT? My legs are not red. I stretch all the time. Thanks for all your help.[/QUOTE]

Thanks for this, Lady. I just tried it and it does work..:) :hug:

I talked to Dr. Skip and I've sent in my script. I'm going to start at 1.5 mg and give LDN another go. Will let you all know how it goes. :)

I posted these quick and dirty answers to someone's questions, WAY back on about page 35 of this thread:

Thought I'd re-post it as some of the same questions are coming up again. :p

Good luck, Desinie!

Cherie

jnet1589
Don't take Potassium pills unless your doctor does blood work on you. Steroids do lower Potassium, as salt is increased from the the steroids. That has happened to me. They usually can do a quick blood test for this. Before and after they do mine.

For leg cramps, I increase my Potassium with foods that are high in it, like bananas, potatoes, spinach, yogurt and many other foods.:)

Better for you. Google potassium in foods and get a list. Yogurt gives you calcium also. Calcium aids with sleep and spasms. Like the old Grandma saying, have a glass a warm milk before bed. That was because calcium relaxes and calms the nerves. Grandma never knew why. :) Even hot cocoa and milk works.
Lady


Thanks for the info Cherie. I know very little about LDN. :)


.

.

I've heard another good vitamin/mineral for spasms, is Magnesium. Calcim and Mag are often combined in one pill/capsule.

Very true Sally. :) I take the combo Vitamin pill. Calcium, Magnesium and Zinc. Then Vitamin D and B-12 and some others also. I take the RDA amount or a little more. I don't take huge amounts of any of them. All are taken on the advice of my MS Specialist. The reason is because of my 20+ years of using oral steroids on and off. And a few times IVSM.

I did have a bone density test recently, so far so good. These Vitamin/Minerals are good for the bones especially with age and steroid use. Always ask your doctor first before taking anything. Even Vitamins can interfere with some medication you may be taking. Some vitamins and/or Herbs are bad for MS.

Magnesium is good but if you take too much, diarrhea will result. :eek: I am sure you have heard of "Milk of Magnesia". The laxative.:)
Lady


.

I've heard that zinc is not suggested for MS patients. I have no idea why....but I've heard that. Does anyone know if it's true? I had suggested Zicam for a cold and someone said that zinc isn't good for MS. Does anyone know? Thanks! :)

That was me. All I know is that is what my neuro told me, and it is listed on the national MS web site as one of the supplements you should avoid or use sparingly. In fact, my neuro only suggests calcium with vitamin D and magnesium (is I want to try it).

Adding Zinc is not good for some people. All others it is fine, except in very small RDA doses. Zinc is used to chelate excess minerals out of the body, like Copper and Iron. It may chelate (remove) other vitamins and minerals as well. JMO

It is normally found in our bodies like iron is, but an excess or deficiency has been known to occur with some diseases.

Some say PWMS have an over active immune system. Zinc can increase the immune system's ability to fight disease, (or attack it maybe). So maybe that is the main point of why they don't recommend it. It has been known to cause ataxia, lethargy other deficiencies in higher concentrations.

It heals wounds faster, aids in bone and blood development, so some is needed. We get it in cereals, breads, grains and some nuts and other foods we eat.

I have too much Copper in my system, it's been tested, so I take the combo pill which has zinc in it to add some zinc to reduce through chelation the excess copper.

It is supposed to be good for those with ADD, and some skin diseases. It is used in ointment/cream form to help heal burns and cold sores.

This is just my opinion, btw. Just some experience and thoughts about Zinc. Other people may know more and have links.
Lady


.

Thanks you guys for all your input. I can do the spinach, but I stay away from dairy because I kind of do Swank. No, yogurt, or Milk. I drink Rice Milk. But I'll look up other foods. Thank you.

If you don't do any dairy, how do you get your calcium, if I might ask? Calcium is great for leg cramps and the nerves too, not just Potassium. Can you take a calcium supplement?
Lady

Time for a question on LDN please.:)

I am only on 1.5 mg for 7 days now. My blood pressure went from normal of 120/75 to 180/90. Has anyone had the drug raise their blood pressure?:eek:
Thanks
Lady

Personally, I have not heard of that on the forums (or anywhere) before, Lady. :eek:

Have you been monitoring it daily, or ?? If it were me, I think I'd monitor it regularly (if you have a monitor at home like I do) over a few days, then monitor it while going without LDN for a few days, then try LDN again, etc. It MAY just be the stress of the season or something, but testing it might help explain things. :confused:

I would also give Skip a call and see what he has to say.

I have very low blood pressure, always have had. It didn't change at all from LDN.

Let us know what you find out . . .

Cherie

You know, I've always had low blood pressure. But, a couple of times since I've been on LDN it has registered higher than ever before (not as high as yours).

I hadn't even thought of a connection with the LDN. I just figured it was all those extra pounds that I keep "collecting", lol. :o

I take fosamax and calcium supplements. Dr. Swank doesn't recommend dairy either. He did a long study on MS. I think carrots have other things have calcium in it:

Fruits and vegetables which are rich in calcium are the following:

• Orange

• Apricots

• Pears

• Prunes and other related prune fruits

• Broccoli

• Sweet potatoes

• Nearly all of the dark, green leafy vegetables

The January LDN Newsletter is full of inspirational stories, but this one got to me:

LDN/MS update - Zillah Damon

Since my last report, my life has undergone some fundamental life-changing events.

The first began on Boxing Day 2006 when my stepson, Adam, complained about discomfort in the hip and his mobility was affected. My husband ended up spending a couple of hours with him in casualty. He was booked in for a hospital appointment in early January but none of us suspected how serious his condition was. Neither did the hospital at first then suddenly everything changed and an oncologist was called in.

He was suffering from a very virulent form of cancer of the ligament which is extremely rare. My husband and Adam’s mother took it in turns to be at his bedside, with my husband usually there at night. I visited as much as I could, although the shock hadn’t done much for my health. In fact both sides of the family were regular visitors to Adam’s bedside.

The way he dealt with this final illness at only 14 years of age was inspirational, but it claimed his life in April, only 4 short months after being diagnosed. You can imagine our feelings at his loss.

My husband was devastated and although I tried my best to support him, he was unable either to share his grief with me, or to witness any evidence of my personal grief. Unfortunately he became more and more distant, spending more and more time away from home. We eventually parted without acrimony just before Christmas 2007, when I finally made the move to live geographically closer to my family as my health was now suffering considerably; I spent a short while living with my mother until I felt able to move into my new home.

So I have just gone through 3 major causes of stress-bereavement, a marriage break-up and moving house (twice). I am convinced I would have been in hospital and on steroids if it hadn’t been for the LDN. These 3 events so close together did cause a relapse, but nothing as bad as one would have expected in normal circumstances. I am working on building myself back up again.

On the positive side, I am able to work four days a week (2 in the office and 2 from home). I have been seeing a physiotherapist who has helped with mobility, but unfortunately these appointments meant I couldn’t take additional time off to go for oxygen therapy. I do find myself getting tired and getting aches and pains. Pins and needles are more pronounced at the moment, so I plan to get back to Nailsea to resume the oxygen therapy as I feel that it and LDN combined seem to work really well for me.

It is now 14 ½ years since I was told that I would be in a wheelchair within a year. Although I do use a scooter to walk the dog (he’s a collie and needs a lot of exercise) and I use a wheelchair for going shopping (e.g. for clothes), on the whole I’m still using my own two feet; although with crutches on occasion. Strangely enough, my situation has helped others. A friend and colleague’s wife was recently diagnosed with M.S. and immediately came to see me for some advice since they felt I was doing quite well. I wish I’d heard about L.D.N at those early stages. There isn’t a cure for M.S. yet, but I’m convinced that LDN is a great help in neutralizing its effects.

http://www.ldnresearchtrustfiles.co....s/Jan_2009.pdf

Cherie