LDN Users...Help

[MSndrstood]

Hi everyone. I am very curious about this LDN phenomenon. There are a lot of issues about the regimen that I am not quite clear about, even after reading the LDN website.

It appears that there have been no scientific studies completed as of this date that I am aware of. The only documentation that is available is through the testimonials of current and past users of LDN.

I have read the postings here from LDN users as well as postings from other sites. I want to be really, really clear about LDN. What EXACTLY does it do for a PWMS. I don't mean metabolically, I read all of that. That is still up for scientific scrutiny as far as the scientific community is concerned. I want to know, what does LDN do for YOU? Be excruciatingly specific please, I really am curious.

I know how I felt while on A, B and C. And I could describe being on these drugs to you. I can describe to you how I feel when I wake up on a number "3" day as compared to a number "7" day on a scale of "1-10" grading on how good or bad I feel on any given day. The way my legs feel, the way my mind works (slow, sluggish or quick, on top of things), how fast I can respond to a stranger, do I get tongue tied easily that day ( a "5", on the verge of going downhill), do my legs get tired quickly or can I walk the mall AND stop at the grocery store all in the same day?
( a "3", little pain, a good day).

These are the descriptions I am interested in hearing. What you couldn't do before vs what you can do now AND how often you can do them now as compared to how often you did them before.

And then there is the pain factor. There are many of us PWMS on narcotic pain meds. In order for us to try this medication and find its relief, we have to be weaned off of our narcotic pain Rx. You can surely understand the reluctance to accept something scientifically unproven in order to perhaps gain a potential benefit that we are as yet unsure of what we are gaining.

My understanding of the initial findings by Dr. Bihari (sp) was LDN use in HIV/AIDS patients improved and boosted the immune system of these patients as well as later cancer patients. It is reasonable to expect that these patients could indeed benefit from an immune system stimulant, but folks, have you forgotten, our immune systems are on overdrive? Has this been addressed? If so, please direct me to that fact-based information.

So LDN users, please, be specific about your successes. Let those of us sitting on the fence, or even just peeking over, make our decisions based on good solid information. Everyone thought Prokarin was the answer at one point. I can't drop this med and start that med at the spur of the moment. This is my body and my life. If it really is something, let's see some good hard evidence. Help the rest of us out. We all know that MS is nothing to mess with, neither are our lives.

Deb

[fightingms]

I posted this on the LDN Forum, and decided to copy and past it here. I do take muscle relaxers {Soma} and sometimes vicodin......would these be considered opiates........cancelled out by LADEN?? Thanks for any advise from any/all LADEN users.............Kim



A Question for LDN users. Can you take LDN and Avonex at the same time?? I have heard from an LADEN user that what was reported { they cancel each other out}, is not necessarily true.

Also how many on LADEN have stopped injections of any kind all together?
Would this be the better option? I am really liking what I am reading about your experiences with LDN.

I don't think their will ever be a true trial study done on LADEN as there would be no money for anyone to gain. Over a year ago I tried to get the NAMES to fund such a study, also tried to get a grass roots approach from any/all interested to call their local NAMES to get them on the ball for such a study. Nothing much happened.

I now think I am ready to try LDN. Just wondering if I can use LDN with the Avonex or not? I have heard conflicting things about this. I would rather not switch to copaxone...maybe just the LDN on its own?

Sorry if I posted on the wrong Forum. Moderator please feel free to move this post to a more appropriate Forum.

thanks for any/all replys....see My MS specialist on the 28th. Am taking lots of LADEN ammunition. Take care...Kim[/b]

[fightingms]

I guess using the spellcheck my LDN's got turned into Ladens.
Sorry for the blooper.......Kim

[Administrator]

LOL- I was wondering what a "LADEN" was--- thought you were making a commentary on the war on terror. Sorry about the spell-checker funkiness

[fightingms]

NMSS got turned into NAMES also he he.......Kim

[JoyceF]

Hi FightingMs....I think your question here is whether you can continue to take Avonex concurrently with LDN. My advise would be to absolutely not do that. I personally feel that you would be taking a hugh risk by doing that. Let's put it this way. It would be as if you were taking nothing because they indeed would cancel each other out. This info from the one man who has been working with it and many patients for the past 15 or years, Dr. Bihari. I would take his advise on anything relating to LDN. Many people still continue with their Copaxone because of the fear that this leap of faith will be a mistake. I totally understand it but I suspect that many decide to drop the Copaxone before long. I also think that those that seem to think that it is ok to continue with one of the A, B or R's just have not hit that brick wall yet so therefore say it is ok to take them both. I think they are doing everyone who is considering this therapy a hugh disservice. As far as whether their will ever be a study for the LDN...well it's everyone guess but as for me. I was not willing to wait for that day. I personally suspect that it is inevitable but it saddens me that many will become so much more disabled then they truly need to be because they are waiting. I have never been on any of the injectables because I did so well for so many years. Never really knew why that was but now I totally understand what was happening. I was heavily into aerobic type exercises for nearly 10 to 15 years. When I started to slack off of that a couple years ago...I started to decline. My balance was getting bad and I cannot walk for long distances without my legs turning to jelly so to speak. Well all those aerobics where creating those endorphins that my immune system needed to stave off any attacks. That is what the LDN does for me now. It creates those endorphins that I am now lacking. Hope this helps with your decision. Don't hesitate to write me if you have further questions at wkendz32@hotmail. I've been using the LDN for about 20 months now and no further attacks.

[dee]

I've been using Prokarin since Nov. 99 and LDN since Apr. 2000.
I was diag. MS in 1984 (Spinal tap)
Held my own til @95-96, then started progressing.
Read about ABC's and decided they're not all they claim to be. Know too many personally that continued to progress on them. (Remember I had MS for over 10 yrs. and it didn't progress in that time even when I was on "No treatments")
I believe other MSers personal experiences over "scientific data" (that's just me) We're the ones living with it.
After reading the messageboard about Prokarin and talking on the phone with Elaine DeLack, and many Prokarin patch users, (many who also found no benefit and only bad experiences with the ABC's - but had very good results with Prokarin)) I decided the transdermal histamine patch sounded like a safe and natural way, so I chose the patch.
It has to be compounded and needs to have a very experienced pharmacist make it. Otherwise the medication will not properly absorb in your system.
While on the prokarin msgbd. I learned of LDN and heard of many MSers positive experiences with it, too. It also sounded safe and natural to me so I decided I had nothing to lose using it. (I personally don't believe the "theory" that we need to suppress our immune systems.)
I am better now than I was in the summer of '99 when I was spiraling downward with this MS Monster and I believe Prokarin and LDN are helping me.
If you or anyone wants to talk more just email me and I'd be glad to call you or email any more correspondence.
dee
norris728@hotmail.com

[fightingms]

Thanks for the good info...........Kim

[Shayk]

Hi all, I'm also curious about LDN and got a notice recruiting people from Eastern U.S. who have Crohn's disease for a clinical trial of LDN.

I'm not an expert in this by any stretch, but they say it's the first clinical trial of LDN in U.S. and so far there are only 10 volunteers.

The web site for more info is:

http://www.hmc.psu.edu/colorectal/research (Heshey Medical Center of Penn State University). Once at that link, you will see the LDN trial listed.

The person to call for more info is Sandra Bingaman, R.N., (717) 531-8108 (per the web site, I have not personally verified the #).

This looks like a beginning to me of the research many of us are after, so if you know someone with Crohn's disease who might be interested and "available" for this so to speak, please think about passing it along.

Have a great day and sorry the Brits and Aussies can't join in on this trial yet.

Sharon

[SammyJo]

This is my attempt to collect information on LDN usage, and present it in a compact statistical format:

http://home.earthlink.net/~dflomer/LDN/

Please take the survey if you are using LDN, and hopefully it will help us track the effects of this drug, until clinical trials start.

[LarryLDN]

http://p220.ezboard.com/fldnlowdosenalt ... ID=4.topic is my 220 day update from last November, and I just added an update from then through yesterday.

[Sandra17]

Hey MSndrstood!

I feel exactly the same way you do. I want to know how it's effecting people on a daily basis. It is going to take a lot to convince me to try a new med. I was on Rebif for 6 months and had to quit because of side effects. I feel better not being on any meds, but if there was something that would help my balance, walking, and tired legs I would think about it. Not happy with the side effects reported by many. Like the fact of no injections. Totally torn about starting anything new. I have learned to cope with my MS, and it has been stable since going off the Rebif. I guess mine is SP, but who knows for sure, not even my Neuro is sure. I like your analogy of being on the fence or even just peeking over it. That's me, just peeking over it!

[watergypsy]

My first symptoms were in Oct. 02 and since dx. of PP in June 03, I have avoided all drugs out of sheer terror of the possible side effects. They seemed just too scary to contemplate. Until now I’ve “managed” and am now seeing the benefit of being packed off to boarding school as a young child in order ‘to learn self-discipline’.

However, I notice that deterioration is now more rapid and my compensation tactics are becoming somewhat onerous. The wheelchair is going to be unavoidable very soon and since my home is a boat, that is going to be a real pain.

I feel I must do something more to help myself whilst waiting for the goat’s serum to become available. Of course, even when it does, I may turn out to be one of those who do not respond – well, so be it, in that case I’m ‘outa here’.

Until then it is my intention to ask my GP for LDN in the hope that I can halt the progress. I shall be endlessly grateful for whatever advice anyone with experience can give me. My appointment is for Thursday 18th and I should like to arrive armed with enough relevant info. to wipe out any arguments he may raise as to why he shouldn’t prescribe.

Any suggestions?

[HarryZ]

Unless your doc is a very open minded physician, you could have a hard time convincing him to rx LDN for you. Most docs will go to their drug manual to look up info on any particular medication and he/she won't find anything listed at all for LDN on MS. That's because there hasn't been any clinical trials done as yet in this regard. This could change soon.

You may want to go to the site, www.lowdosenaltrexone.org and print out some info about LDN and take that with you. You can also indicate to your doc that several family phsyicians and neurologists have rxd LDN for their patients. Sometimes docs like to be seen in agreement with their peers.

Good luck.

Harry

[JoyceF]

Hi watergypsy....that would be my advice. Just do not take no for an answer. It is your right to do this. Simply find a doctor that is willing to go along with your program. I usually tell people that if they need to find a doc in their area, they should call one of the compounders. Skip is very helpful. You can see info about him at his website. www.skipspharmacy.com. You might also try printing out the info that has very nicely been put together by someone who has just recently been successful in convincing her doc to prescribe. I think she did a faboulous job of concisely compiling information that can be printed out and presented. Go to www.larrygc.com/ldn/ldndoctorsfolder.doc There is also some information at www.larrygc.com/ldn/ldnpatientsguide.doc
Good luck to you. Just remember, this is your right. I decided long ago that any doctor that is not willing to go along with my program is outta here. I no longer see any neurologists because the doc that I found (who incidentaly had no problem prescribing this for me, said it was almost homeopathic for pete's sake) told me right out that he had absolutely no problem with prescribing it. This was over 2 1/2 years ago and I am doing just fine. I have not had any sort of attack in that time. Have had MS for over 20 years too so this is not a recent thing for me.