I have definitely progressed while on LDN

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I have definitely progressed while on LDN

Postby KateCW » Sun Jul 22, 2012 7:35 pm

I have been on LDN or over 3 years and have declined significantly. I remain on it because it's cheap, benign, and who knows? Maybe it's doing me some good.

I wanted to post this loud and clear because on other posts here people are making sweeping statements like " no documented cases anywhere of anyone getting worse while on LDN" .

Bull****.

MY doctor has other patients who have discontinued it due to no benefit.

For those of you with new lesions while on LDN-try not to worry too much- lesion load seems to have very little to do with disability and progression.

I wish I were the type of person who was more suggestible and believed I felt better with acupuncture, vitamins, dietary changes etc. nothing like that has ever made me feel better. Nor do I know anyone in "real life" who has ever benefitted from CCSVI. Actually the only thing that has ever made me feel better or seemed to have slowed progression are the drugs that so many patients disdain- steroids, methotrexate, etc.

So for those of you looking for information on LDN- yes you can get worse on it. Some people may feel better. Maybe it depends on symptoms or type of MS? Who knows. It's probably worth a try .
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Re: I have definitely progressed while on LDN

Postby bartman » Sun Jul 22, 2012 7:41 pm

have you tried minocycline yet?
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Re: I have definitely progressed while on LDN

Postby KateCW » Sun Jul 22, 2012 7:51 pm

No I haven't. Here in Canada ( or at least at my clinic ) they don't prescibe anything for PPMS except drugs for symptoms (Baclofen, etc). LDN and occasional steroids are prescribed my very open minded family doctor. I have been travelling to NYC every 2 months to receive intrathecal methotrexate at the International Multiple Sclerosis Management Practice Clinic. I *think* it has stopped my progression.

Have you tried minocycline? What kind of MS do you have?
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Re: I have definitely progressed while on LDN

Postby patticake66 » Mon Jul 23, 2012 6:43 am

This is what I was trying to say earlier. Sweeping statements across the internet...it actually confuses you. Again, common sense would tell a person that all meds may work for some but not for everyone. The internet is great for learning about alternative ways to treat MS and symptoms but you need to be openminded and understand that when statements like "no one has ever developed lesions while taking LDN" is stated, you know that is to good to be true otherwise everyone would be taking it and everyone would be lesion free. Having MS is emotionally draining as it is let alone having to take meds and then realizing that they aren't working for you but for everyone else....please. Stick to what works best for you and just keep an open mind. We are all in the same boat together and our destination is all the same...stop the progression and cure the disease!!!!
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Re: I have definitely progressed while on LDN

Postby jimmylegs » Mon Jul 23, 2012 11:15 am

hi kate, sorry to hear it's not stopping progression. curious if you've had nutritional bloodwork done?
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Re: I have definitely progressed while on LDN

Postby KateCW » Mon Jul 23, 2012 11:43 am

I did have some done by a functional medicine doctor a year or so ago. She said the test she runs are cellular, not serum? That probably makes sense to you. I was very low in magnesium (spasticity!) and C0Q10. She got me some ubiquinol and other good quality supplements.

I think that's what you mean by nutritional bloodwork? I have my vitamin D monitored as well and take 35,000IU weekly.
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Re: I have definitely progressed while on LDN

Postby jimmylegs » Mon Jul 23, 2012 1:02 pm

yep that's exactly what i meant.

i usually just get/suggest serum tests, b/c there's LOTS more to compare to in research. even though RBC tests are supposed to be superior, i have yet to run into problems using serum - still very telling.

i'm not surprised you had spasticity if your mag was very low! glad you're monitoring d3 also. ever had a zinc test? that one's *key*. if you haven't, see if you can get someone to give you a serum (or plasma) zinc test.

also, who was your functional med doc, iima?
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Re: I have definitely progressed while on LDN

Postby bartman » Mon Jul 23, 2012 5:22 pm

Kate,
I don't have MS but I do have a very close cousin that was misdiagnosed with MS in 1996 when it was really Lyme, Bartonella, Babesia and Cpn and Mycoplasma Pn. We discovered this in 2009. He was really declining rapidly and we found a doctor who presrcibed minocyline + copaxone based on Dr. Metz work from the Univ of Calgary in Canada. This combination along with some other antibiotics and IVIG really helped my cousin, stopped the disease progression and many many improvements. He currently does just the minocycline + copaxone and is able to live a functional life . he is not perfect but he is he greatly improved and continues to improve it seems.

It is my understanding the the LDN is used to modulate the immune system so that it works better on it's own. Since lyme is a huge controversy in the US and just as big in Canada lately there has been lots of press there, it's possible these infections are causing your lesions mimicking MS. Make no mistake it took 2 years of very hard treatment in which my cousin got worse before he improved because the infection was so large the killing of the infections overwhelmed his body (aka herxheimer reaction). If you can find a Lyme Literate doctor (in which there are few in Canada) and not so many in the US they could possible help you get better. Ask your doctor about IVIG and minocycline, both are used for MS but try and find a lyme support group and a doctor with the knowledge to help you, because being that you are ppms it will likely be more difficult.

A true test would be to give minocycline a try (doxycycline might be easier to handle) and if you get worse you will know. The science is there minocycline + copaxone is very effective just look it up Dr. Metz from Calgary.

Sad how few dr's suggest a safe drug like minocycline despite the positive science. The study shows that copaxone + minocycline is better than copaxone alone. However, there is no control group of minocycline alone...likely because there is no money in generic antibiotics!!

Anyway, do research and discuss with your doctors and consider really educating and looking into Lyme disease plus coinfections. It worked for my cousin. The IVIG is really helpful too, IMO.
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Re: I have definitely progressed while on LDN

Postby MSnik » Tue Jul 24, 2012 3:12 am

Hello there. Id like to back up and say that I didnt make the claim that no one gets worse on LDN. What I actually said, in context, was "there have been no documented cases of people getting lesions while on LDN". Go ahead and show me that Im wrong. Id love to see it, because as far as i can see, prior to being corrected here, NO ONE ELSE has ever claimed that they have progressed while on LDN.

Having spoken to the authorities at Skips Pharmacy, I am told that its virtually unheard of for anyone to develop the amount of lesions I did in only 10 months on LDN. I asked if they had heard of anyone getting worse on LDN and was told no.

Which is why I asked. I didnt make any claims. I asked.

have RRMS. I was on Rebif for 6 years and progression and lesion free, until I developed NABs (antibodies) to Interferon. I was sick for 6 months before they discovered the reason. I went med free for less than a month when I started LDN. Now, 10 months later, I have over 60 lesions; many of which are on my brain stem, in a most dangerous area. My Neuro is very concerned. I feel terrific. I havent felt this good in 6 years. I have zero clinical symptoms. Im trying to find others who actually think they benefited from LDN therapy, but yet, have still progressed radiographically.

My doctor wants me to add Copaxone to the mix immediately. IM having a hard time wrapping my head around that, as Ive been shot free for the past year, and do not want to deal with the injection site reactions. I was looking for opinions on whether or not LDN alone, has caused anyone else to progress.

I guess I found my answer, so thank you. BUT I have to say, I feel very attacked. My "claim" wasnt a claim, it was a comment made (and then taken out of context). In all the reading I have done, in all the posts I have read, not one person has stated that they have developed new lesions radiographically while on LDN. A few people HAVE claimed that it hasnt helped them and they have stopped it. Lots of complaints that muscle spasms have caused them to stop taking the drug, a few even didnt tolerate the sleeplessness which accompanies getting used to LDN; but NO ONE talks about radiographical progression.

I come here daily hoping to find another person who can tell me if they too, have had radiographical issues with LDN- this is the first post which even suggests that anyone has progressed. According to this post, however, it appears that the poster is having symtom progression~ Im actually also wondering about radiographic progression.
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Re: I have definitely progressed while on LDN

Postby jimmylegs » Tue Jul 24, 2012 6:07 am

msnik, if you are also progressing, quick question - have you had nutritional bloodwork done, to rule out nutrient issues known to be associated with ms? if you're seeing lots of lesions appear, i would think it prudent to do some more investigation regardless of the fact that you're currently feeling good. (it's known that lesions don't have lots to do with symptoms... but 60??? i'd be working hard to figure that one out.
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Re: I have definitely progressed while on LDN

Postby MSnik » Tue Jul 24, 2012 6:20 am

HI. Thank you for your reply. I have had cellular and serum bloodwork done every six months for the past 5 years and am taking supplements accordingly. They seem to change almost every year. When I was dx with MS, 7 years ago, I woke up with numbness and tingling, never had a symtom before that. My GP sent me to a CT scan, thinking pinched nerve- the radiologist noticed abnormalities and referred me to a neuro, who then sent me for my first MRI. It was then, that over 45 lesions were detected. Rebif immediately followed, and for 6 years I had unchanged MRIs and no symtoms other than the onset symtoms. When I started getting sick and found out that I had developed neutralizing antibodies- I was taken off interferon; MRI showed no change to date..
Now, 10 months later, and only being on 4.5 mgs of LDN a night (from Skips), I am finding out that my next MRi showed ten additional lesions- because many of them are in the brainstem (never before seen) my doctor is scaring the heck out of me...and pushing the addition of Copaxone.

Interestingly enough, my neuropathy finally went away after 3 months on LDN. I sleep well, have no urgency/ frequency issues and no pain whatsoever. I love what LDN has done for me..I just dont like that lesions are appearing so quickly.

I hope that gave you the info you wanted. Yes, I have nutritional bloodwork done regularly. Im not deficient in anything as of 3 weeks ago. My supplement and diet seem to be working well.

And for the record, I have seen two LLMDs to discus Lymes possiblity. Its been ruled out twice. I have also seen doctors about antibiotic therapy and have had THAT bloodwork done and been told its not in my favor to start this. Im extremely active, work in healthcare, spend my life with doctors and surgeons- I feel that my care is better than good- but no one can explain why the new lesions. OR, be sure that Copaxone will help. I truly do not want to use Copaxone- but am seriously considering it if it means less probability of debility.

You guys keep bringing up the fact that lesions do not always correlate with symtoms. I imagine there is truth to that, but some of the most progessive cases of MS have the most lesions, as well as people with the most debility, seem to have more lesions on their brain stems and spine. Prior to this last MRI, my spine was clean, only my brain was affected, the lesions appear to be spreading further out. Any thoughts on that?
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Re: I have definitely progressed while on LDN

Postby jimmylegs » Tue Jul 24, 2012 6:38 am

hi again, if i may drill down re the nutritional testing a little, can you clarify which tests you have done on the regular 6 month basis? i'd be interested to see some of those results...
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Re: I have definitely progressed while on LDN

Postby MSnik » Tue Jul 24, 2012 6:47 am

Hi. Sorry but I'm t work and don't have all that information available to give you. I'm not really interested in discussing nutritional counseling or labs anyway. I do believe in supplements and am taking them as prescribed. I also follow a modified Paleo diet. I have a nutitionalist as well.
My question was about the specific topic of lesions and LDN. I really am looking for info connecting the progression of lesions radiographically while not having any clinical symptom presentation. I'm also looking for info on the correlation between number and placement of lesions vs progression. I feel very confident that my nutritional aspecys are under conntrol.
I appreciate your thoughts and respect your opinionn but what you are asking me about isn't what I'm inquiring about and IS something I'm already keeping an eye on.
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Re: I have definitely progressed while on LDN

Postby jimmylegs » Tue Jul 24, 2012 7:08 am

interesting, good luck then :)
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Re: I have definitely progressed while on LDN

Postby MSnik » Tue Jul 24, 2012 7:17 am

I absolutely know that you are correct in saying that supplements and nutrition play an important part in managing this disease. BUT I didn't come here to discuss that. I feel quite confident in my own protocol which actually does follow several of your own. I read your post/blog on what you take/eat, and follow a very similar diet and take very similar supplements.
Your comment "interesting" was not appreciated. If you didn't have anything to say regarding my questions, you were not obligated to respond.
Sarcasm is not becoming.
All I did was ask for come opinions on LDN and lesions...isn't this the LDN board? I believe there is another forum for nutritional advice.
If anyone can talk to me about the questions I've posed, I'd be most interested in hearing thoughts. I've been nothing but polite here;however, I now feel like I've come to the wrong place for LDN assistance.
Last edited by MSnik on Tue Jul 24, 2012 7:36 am, edited 1 time in total.
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