Quick LDN Survey

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

Quick LDN Survey

Postby SammyJo » Thu Mar 11, 2004 8:49 pm

Please take a moment to answer this short survey on LDN:

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

You can also view the ongoing results to help you with your LDN research. This may also help sway medical opinion so that a clinical trial on LDN & MS gets underway. Researchers like stats!
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Postby Arron » Fri Mar 12, 2004 2:50 am

This is a great effort; we encourage everyone to participate.
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215 resonses

Postby SammyJo » Thu Apr 15, 2004 8:10 pm

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

The real-time online survey has collected 215 responses on LDN usage since 2/26. This is not a scientific study, but a more compact way to statistically lump together anecdotal experience, so we can say things like 65% of users report symptom improvement, and 43% think it has halted progression.

I did this so we'd have something more concrete to show our doctors. I am happy to report that I saw my neuro today, who was blown AWAY by my improvement after 2 months on LDN. I had to get the script from another doc to start, but after my neuro saw me prancing about w/o my cane, and looked at the survey results I took with me, he happily wrote me a script, and said he is going to take this data to their MS research team. This is at a big US university med school, which publishes many studies on MS.

Perhaps we will get through if we keep at it.
Samantha
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Postby SammyJo » Sun May 16, 2004 11:31 am

Aaron,
Great response you published to the ridiculous anti-LDN critique from NMSS! Read article: http://www.thisisms.com/article-107--0-0.html

The LDN survey http://home.earthlink.net/~dflomer/LDN/ has now reached 260 responses, with results holding steady since about 180 users. Results are not as high as Dr Bihari's, he has around 90% effective, but they are still more than double that of traditional MS meds.
Samantha
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New LDN Survey Tracking Disability

Postby SammyJo » Thu Jul 15, 2004 2:29 pm

Go here to take the new survey, and see earlier survey results:

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

Thank you to all who took the first survey. It has accomplished a
huge goal - it helped convince my neurologist. He has put a proposal for the first clinical trial of LDN for MS to their review board at a major academic center. If a trial begins, it will no longer be so hard to get scripts. Will let you know when I hear it gets the green light. And let me know if you come across a researcher who is open to LDN trials!

If you have MS and have been on LDN for at least 3 months, please take
the new survey. It was designed with input from a researcher
interested in LDN.

Take the survey results to your doctor to help spread awareness. The
first survey of 267 MS people showed a very positive relapse rate, 1
in 5 years.

SammyJo
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Postby crispy » Thu Jul 15, 2004 11:43 pm

Hi SammyJo, :D

I think the new survey is giving misleading results, in cutting out any responses from those taking LDN for less than three months. I have tried LDN at different doses on four occasions now, each time I have been prevented from carrying on due to the side-effects it has on me.

I realise I am in the minority, but have had contact with two other people with similar problems. As the survey currently stands, it seems to be giving inaccurate results. Just a thought :idea:

All the best,
Chris P
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Where you get your LDN...

Postby JoyceF » Sat Jul 17, 2004 8:06 am

Hi Chris, I know that I have asked this before but not sure if I got an answer from you. Where have you obtained your LDN. I have read where some are allergic to some of the fillers. Wondering if there is any way that you can try and get it filled at a different pharmacy using a different filler. I think there is always a possibility of being allergic to the Naltrexone itself. An allergic reaction might cause the symptoms that you have exerimented with. Please don't give up yet.
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Postby crispy » Sat Jul 17, 2004 8:37 am

Hi Joyce, :D

Thanks for your thoughts, the specified filler was calcium carbonate, as recommended by Dr Bob over here. I've had two batches made up at different doses, so that would at least eliminate a faulty batch.

I could try another filler, but I'm not sure I'd want to risk it again. Thanks again for your concern.

All the best,
Chris P
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Postby Arron » Sat Jul 17, 2004 3:44 pm

chris, what exactly happened when you took LDN? I apologize if you have specified this somewhere else, but it would be useful to hear your experience here.
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CC as a filler

Postby JoyceF » Sat Jul 17, 2004 4:40 pm

Oh boy Chris...I am no expert on all this stuff but I have read where Calcium Carbonate might not be the ideal filler. I get mine compounded at Skips and I'm pretty sure he has mentioned that for some reason Calcium Carbonate packs up somehow in the capsules, thus creating a situation where the LDN becomes slow release rather then fast release. Not sure if you have a provider that that could mix it up using another filler such as Avicil which is what Skip uses. Just a thought. This is why it is best for all of us to ask these questions. There is just not enough info out there to just have at our fingertips. Brenda is the one that is really well versed on this topic if I remember right. You might ask in the yahoo group and see what kind of answers you get. I know that you must be kind of tired of all of this experimentation but it is so darned important that I just hope you don't give up before you explore all of the possibilities....{{{hugs}}}.
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Postby crispy » Sun Jul 18, 2004 6:22 am

Arron wrote:chris, what exactly happened when you took LDN?


Hi Arron, :D

I thought I had posted here on the problems I had, but when I search for my post, I can't find it. Perhaps it was on one of my other forums - I'll copy an original post in below:

>> original post follows <<
It's bad news for me yet again with the LDN, I've had to give up for the fourth time. I don't want to put anybody off the idea of trying it, but all you seem to hear are the success stories. I thought it may help folks to hear both sides of things before making a decision.

The online survey is probably useful in reaching a decision, but I wonder how many people bother to go back and complete it, if they don't get on with LDN, just a thought.

I can only see one improvement since taking it, and that is only having to get up once a night, rather than up to five times. If the side effects of using LDN were insignificant, then that benefit alone would be worth taking it for, but that has not been the case for me.

I've had no trouble getting to sleep on LDN, or before it, in fact while on it, I have been falling asleep in my chair several times a day. After the first few days of taking it, I have just felt nauseous, extremely weak, had multiple headaches and been generally unwell.

I've had two serious attempts using 3mg with a two week period of 1.5mg in between them. Both dosages seemed to have pretty much the same effect on me.

For those of you already taking LDN, and showing good results, then I'm really pleased for you. For those hoping to try it, I wish you every success. This is clearly yet another example of how MS is so different for different folks.

>> End of original post <<

All the best to all,
Chris P
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Postby crispy » Sun Jul 18, 2004 6:40 am

Thanks again for your thoughts Joyce, :D

Thinking about it, I'm pretty sure the post above went to the Yahoo forum, and that's one I'm thinking of losing. There are too many folks on there that think they know it all. They try to liken everyone elses situation to their own, when anyone with any experience of MS knows that no two cases are the same, and very often the two bodies will react to things in very different ways.

Living in the UK, we are restricted to where we can get LDN supplied from, and I'm pretty sure that tight packing of the filler would only influence the quick release properties needed for LDN, rather than cause adverse effects, but I'm no chemist.

I'm not totally ruling LDN out for me, but for now I shall at least give it a rest :)

All the best,
Chris P
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Postby Guest » Sun Jul 18, 2004 7:11 pm

Chris,
Another concern on reactions to LDN: are you taking any narcotic containing pain meds? Just spoke with someone who started LDN too soon after pain meds and full blown withdrawl symptoms like nausea etc.

Re the survey, a given survey has to look at a specific question to answer, not the whole universe of possible reactions to LDN. This time I am trying to find out if for the subset of those that tolerate and continue to take LDN for a duration greater than 3 months, does it affect disability?
But I can see where a "reactions to LDN" database might be helpful. I will work on that, so there is a place to record this type of information.

SammyJo
http://home.earthlink.net/~dflomer/LDN/
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Postby crispy » Sun Jul 18, 2004 10:46 pm

Hi SammyJo, :D

I'm not trying to be critical of your survey, merely pointing out how the results might have influenced my decision of whether or not to try LDN. I may have been less concerned about the results experienced, if perhaps I knew that x% of respondents couldn't get on with the med.

In reply to the pain part of your post, I have never taken anything stronger than paracetamol. I often feel quite out of place on these forums, reading of others pain problems, but apart from the headaches recently, the pain part of my MS has been more of a discomfort than a pain.

All the best,
Chris P
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