Who here takes only LDN and NO other MS drugs? PLEASE post and let me know....

[Tapdancer]

Knuckle, do you take Psorex or Malic Acid? Dose? I take one tab of Malic Acid (375 mg) at bedtime. Not sure if that is enough. I may have asked you this before. I am sure you understand the memory problems. Thanks.

[ewizabeth]

LDN is not a disease modifying drug approved by the FDA for treatment of MS, so ewizabeth is right about that. But Lilly is also right that there are patients who are using LDN as such to treat their own MS. Many do so based on the work of a Harvard-educated doctor, Dr. Bihari and a huge number of other doctors, both researchers and practitioners.

Ewizabeth said LDN isn’t a disease modifying drug and went on to say it doesn’t work like Bihari’s followers say but provided no source to support that position.

Myoak,

I work 55-60 hours a week so I haven't had time for a proper response but I will have one. I am not trying to put others down, I just do not want others to think that LDN will do something that it just does not do. I don't count anecdotal opinions as evidence that it works as a DMD. I'll be back when I get some time off and it is past planting here, within two weeks.

Remember that I too have MS, and I work full time with fatigue, and all of the other benefits of having MS.

[zjac020]

[QUOTE=knuckle;1450348]"You may want to also look into Psorex'

No kidding, $30 a bottle, plain old Fumaric Acid used by dermatologists to treat Psoriasis.

If Dimethyl Fumarate, otherwise known as "Fumaric Acid Esters" corrects a Fumaric Acid deficiency in the citric acid cycle, why wouldn't this stuff too?

I've also thought Malic Acid would be beneficial as well. Malic Acid is good for skin and oral health and consequently is an ingredient often found in toothpaste and cosmetics.

Apple cider vinegar which is high in malic acid content is a folk remedy for MS. People use it to treat Psoriasis too.

I think there may be a connection between the citric acid cycle not processing vitamin D correctly, or possibly not getting enough, that the citric acid cycle breaks down and the immune system fails to regulate Tcell balance. Adding Dimetyl Fumarate, or Fumaric Acid, maybe just Malic Acid, helps correct the problem - along with a vitamin D supplement.

Google: dimethyl fumarate cancer

Dimethylfumarate impairs melanoma growth and metastasis.

http://www.ncbi.nlm.nih.gov/pubmed/17178886

Now that's even more interesting, so does LDN.

I've been taking about 1800mg Malic Acid daily along with an Apple Cider Vinegar supplement every day for a couple of years now.[/QUOTE

I bought a bottle of psorex and I just need to take the plunge to start taking it. I have been told it can cause flushing but also that its avoidable.as long as you take it with some food. What dose do you take knuckle?

I also drink 2-3 tablespoons of raw organic apple cider vinegar every morning. do we still need even more malic acid than this?

[Myoak]

Thanks for taking time out of your busy day to reply, ewizabeth. Fatigue can be such a problem in MS and it does more harm than good to press beyond what is prudent. You are a real trooper, girl, but always take time for your own rest.

I'm interested in what LDN “just does not do”, I hope you will elaborate with scientific support and barring that, personal testimony as we have heard in this thread.

Tysabri is the most effective MS treatment with 34% taking it classified as “free of disease activity”. I don’t recall ever seeing figures from some of the early FDA approved MS drugs. Our neurologist, the director of a large MS clinic, told us it’s doubtful some of the early drugs would even get FDA approval if brought to the market today.

Some drugs got approved because there were no other treatments available. But balancing risk-reward today some of them might not get FDA approval, in his opinion.

It brings us to an important point. In MS, what works for one may not work for everyone. 34% on Tysabri free of disease activity means 66% are not. Although a goodly percentage of those may benefit, not all do. Some develop neutralizing antibodies; a few develop PML so it is not a good medicine for everyone in spite of being more effective than the early MS drugs.

All of the MS drugs have a similar pattern, by that I mean a pattern of varying individual effectiveness.

I believe the same can be said of diet or any alternative method of treating MS. Different individuals sometimes get similar results but often different results, same as with the tested drugs.

People make decisions differently, some choose an FDA approved drug based on a percentage from clinical trial. Others are leery of the FDA approved MS drugs for obvious reasons, notably side effects and safety issues.

Rather than choosing a drug based on a percentage from an FDA approved study many people value personal testimony very highly and are comfortable choosing an alternative treatment which MSers testify is working for them.

Diets, supplements, stem cell treatments, LDN... there are a host of alternatives to FDA approved treatments. Within both scenarios, FDA approved and alternative, there will be varying individual outcomes, as we all know.

The great value of threads like this one is hearing directly from LDNers as Lilly requested. I must admit, taken as a group, I find LDNers particularly articulate. Those modifying the course of their MS through nutrition, or diet also seem almost peculiarly cognizant. I know how unscientific it is to mention that but it is such a deep impression I’ve gotten over the years. It helps me to believe they are onto something good.

When we see and know MSers in our personal lives having good results on various alternatives it gives credibility to them. Anecdotal evidence is not just opinion it is personal experience outside scientific trial. Primarily, doctors prescribe only FDA approved treatments but patients are not limited to those.

Many MSers are busy with life and rely on their doctors to offer one of the FDA approved drugs for MS. That’s fine. But others are willing to search the alternatives and see what benefits others are getting from them. That’s fine, too.

It often comes down to the same type of decision as one of the FDA approved drugs… educating yourself, making your best guess and giving it a try.

The best FDA approved therapy is really effective in 34% of RRMSers and has a death risk so little wonder people look at alternatives. Even more so with PPMSers and SPMSers where nothing is FDA approved as a DMT. Nothing.

Dr. David Gluck gave his opinion of LDN as the most significant medicine of the last 50 years. I’m reluctant to go that far but I will say I believe it is one of the most significant medicines of the last 50 years.

Thank you for being courteous in our exchanges, ewizabeth. I appreciate civil discourse, I’m sure the mods do, too. I’m still inquisitive who the poster was who had Dr. Turel for their neuro. A great doctor, IMO. You, perhaps?

Blessings to you, ewizabeth, I wish you the very best dear, dear lady.

[knuckle]

I doubt Copaxone would be approved today considering it's efficacy metrics.

One of the problems I have with all these clinical trials is they do not differentiate by sex even though many more women get MS than men and disease progression seems highly determined by hormones/age.

One drug may work better in women and less in men and vice versa.

Another is they only seem to MRI-measure brain lesions to determine drug efficacy and not spinal lesions. Spinal lesions are what put you in a wheelchair and the brain seems to "rewire' itself more readily.

Men who get MS earlier in adulthood, when Testosterone levels are high, are more likely to get hit hard in the spine while Estrogen seems have a protective effect on women. However, after menopause things can get worse.

The only drug I know of that addresses this MS-hormone connection, besides Estriol, is LDN, and maybe Tecfidera.

Then you've got this whole "relapsing-remitting" problem - meaning the disease mysteriously comes and goes. How can you trust drug data that is measured to only be 30% effective in a two year period based on that?

I wouldn't be surprised if plain old vitamin D in a head-to-head clinical trial with Copaxone or Avonex could be just as effective, but we'll never know.

[knuckle]

"I bought a bottle of psorex and I just need to take the plunge to start taking it. I have been told it can cause flushing but also that its avoidable.as long as you take it with some food. What dose do you take knuckle?

I also drink 2-3 tablespoons of raw organic apple cider vinegar every morning. do we still need even more malic acid than this?"

zjac020, I take a couple "High Potency Apple Cider Vinegar" caps from Swanson's along with 600mg Malic Acid at each meal and 300mg Alpha Lipoic Acid.

Along with the LDN, some vitamin D, I think you're getting the same immunomodulatory effect as Tecfidira or Psorex.

I'm also taking Curcumin, Glucosamine and Cinnamon based on the research being done on them as MS potential treatments.

[J-Bo]

Thanks to all who answered my questions!

misslux, you asked:

Ampyra was shown to help with walking speed and secondary benefits in all four types of MS in their clinical trials. Do you notice a difference if you have a late dose? I can totally notice a difference!

I ran out for about 5 days about a month ago, and I couldn't really tell much difference. I thought I saw somewhere that 30% (or was it higher?) don't get any benefit at all. I think I've been on it about 3 months now and I guess by now the verdict is in for me, but I'm reluctant to give up and accept it. The truth is, if I'm honest with myself, I've lost ground.

[misslux]

Ah that is too bad. If you haven't noticed a difference then you probably fall into the group that it is not effective for.

[knuckle]

J-Bo,

You may want to look into trying 4-aminopyridine ("4-AP") instead of Ampyra and see if it has a more desired effect. You can take more of it with less risk over the same time period. People have been taking 30-40mg 4-AP daily for years long before 20mg Ampyra daily came to market without risk of seizures.

Because Ampyra has to account for lower weight individuals, and it is a sustained release product, which is riskier, it comes in a lower 10mg x 2 dose. The result is for some people that may not be enough to produce improved mobility.

4-AP is basically just generic Ampyra and you can get it made under prescription at several compounding pharmacies throughout the country. I get mine from Skip's Pharmacy in Boca Raton, FL by mail order. It costs $110 for 300 10mg caps of instant release 4-AP - cash, no insurance - which is a little over a three month supply - or $35 a month.

Some compounding pharmacies will also make a sustained release version.

I take 10mg of instant release 4-AP every six hours but not at night. A lot of people feel instant release is safer and more effective than sustained release because sustained released 4-AP is subject to many variables of what you eat.

I've been taking 4-AP this way now going on six years without a problem.

The cost difference, about .30 cents for a 4-AP capsule compared to about $15 a pill for Ampyra, is ridiculous and another reason why our health insurance costs so much.

The brand name "Ampyra" was derived from "Aminopyridine" - same stuff.

[J-Bo]

Hey thanks, knuckle! This thread really is great! The MSWorld forum in general has so many informed and articulate posters, and I've gotten a lot of good information here.



I have an appointment with my MS doc in June, and I intend to discuss both your 4-AP suggestion and the LDN idea. Maybe I'll send some preliminary info through my local health care system's patient portal in advance, as I get the impression that a lot of docs don't know much about these two meds.

[zjac020]

Men who get MS earlier in adulthood, when Testosterone levels are high, are more likely to get hit hard in the spine while Estrogen seems have a protective effect on women. However, after menopause things can get worse.
....
I wouldn't be surprised if plain old vitamin D in a head-to-head clinical trial with Copaxone or Avonex could be just as effective, but we'll never know.

Two things here:

- Research has shown that high testosterone. levels are associated with fewer.relapses.as it seems testorone helps regulate.the.immune system and is neuro protective.

- im.pretty sure high doses of vitamin d are more effective that copaxone. you should research what Dr Cicero (from brazil) has achieved with thousands of MSers with high doses of vit d3.

[knuckle]

For more information about 4-AP, google this phrase:

4AP All You Need To Know Dr. Wise Young

Dr. Young was part of the team at Acorda Therapeutics that took this cheap generic compound costing pennies and turned it into Ampyra - a drug now costing $30,000 a year for MSers.

I'm sure he is now a multimillionaire.

[Trixi]

I've been taking LDN for about two years. It's been fine and there haven't been any new lesions. I was on Tysabri for over four years and decided to make a change. I'm currently thinking of taking one of the new pill form meds.

There or I didn't have any side effects with it and everything has been good.

[KiKi1858]

Solumedral (IV Steroids)

I am sincerely sorry you have been dealing with this so long. That sentence is so short and generic and does not relay how I really feel deep down-but what can we say???

I have been living with this for about 12 years and been through giving up to trying to hang on...but, glad you r happy today.

Had a question. Do you ever use IV steroids now after dealing with this so long? Thought you might have some knowledge about the steroids, I mean the long term use. They have been the only thing that helps me at all. Have used them for every month for 6 years (although now trying hard to taper off a bit). Every time I try to go 2-3 months, here comes the total inability to function.

My deal is 'at what point to I stop them' or why do we (other than the obvious) if they work? I understand the cons, side effect etc. all too well, but without them I will just wither away?

You don't seem to hear a lot about the use of these long term and I wonder why since they work so well for me.

[KiKi1858]

Vitamin D

Sorry, just saw the post re: vitamin D.
Question: My blood work shows I have more than enough vitamin D, so do some MSer's have their blood work check and it shows low levels? or does this theory indicate that someone like me with more than enough needs much more (than the body is suppose to have). Just like years ago because of my extreme fatigue, I used to get B12 shots monthly but my I discovered later that I had more than enough b12 also. Too much of some vitamins are bad for u. Anyway...that's my question please