I have definitely progressed while on LDN

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Re: I have definitely progressed while on LDN

Postby KateCW » Tue Jul 24, 2012 7:22 am

Sorry if it seemed as though I attacked you- I was rather vehement in my statement-probably some of my disappointment and frustration coming through.

I have progressed very quickly in the 8 years since my son was born. I had some left leg weakness for a few years and struggled after my pregnancy to get anyone to listj to my concerns ( I was told I had a pinched nerve post pregnancy, I was struggling physically becUse I ws a 40 year old new mom, had a C- section etc.

I had no brain lesions and some subtle spinal lesions with no inflammation or change over a year and was told I had transverse myelitis and shouldn't get worse. No meds, no follow up and 3 years
Later I am in a scooter. More tests to rule out other illnesses and they finally decide on PPMS. Monoclonal bands in my CSF, not oligoclonal. Told I have no enhancing lesions and oly 4 little spots on my brain that anyone my age could have. However I have significant disability-EDSS 8.0. I haven't had an MRI since 2009 but will post on here if I get one and there is any change. I started LDN after that MRI. So....in typiCAL PPMS fashion my lesions don't look so bad but I am in a bad way. With you having RRMS I know things look different.

Youare in a difficult place, I agree-feeling better and looking worse on an MRI. i have no idea what I would do in your situation. Good luck with your decision.
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 MSnik » Tue Jul 24, 2012 7:34 am

Kathy,
You didnt attack me. I just wanted to clarify why I wrote what I did. No one has ever been able to tell me that they have gotten new lesions while on LDN, and yet- I obviously have.

Im really sorry for your situation. I know alot about what you are going through. I was 35 when I was dx, and like I said, woke up with tingling/ numbness and was told it was a pinched nerve- the rest led to a MS dx and a ton of lesions - all on my brain.

BUT, what I left out is that I had gotten married only 3 months previously, married a widower with 4 children and became an instant stepmom. When I was dx, I had just graduated med school and was starting my residency. I had so much pressure going on- so much stress- that this may have been that "traumatic event" they say sometimes accompanies one's first MS attack. I was lucky, I didnt progress clinically. Im still at a 2 on the EDSS scale; however I work in a skilled rehab facility a few days a week when Im not in my own practice. I see 8's all the time. I can feel what you must be going through. I can only imagine your frustration at having to deal with this.

Thank you for telling me your story. I came here in order to hear about other's experiences with LDN and thats exactly what you gave me. Im surprised that you havent had a MRI in so many years. In my world, they are ordered every six months to a year at most- but Im sure you have your reasons. You might want to get one (if you can) just to see if additional lesions have also accompanied your additional progression. Its a curious thing, you have so many less lesions than I do, and yet you are PPMS, while I have so few symptoms and so little debility, and so many lesions!

This is quite an illness..
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Re: I have definitely progressed while on LDN

Postby patticake66 » Tue Jul 24, 2012 7:56 am

All I need to do is call my neuro and ask her for the results of my last MRI (Jan.). But knowing that I have developed lesions while on LDN would put me in a depression. I physically and emotionally feel great and I don't want to upset that. I am trying to hang on to these feelings as long as I can. Have you tried other LDN forums? I am sure you are not the only one who has develop lesions while on LDN. I find that very, very hard to believe. Keep asking and looking around. Good Luck....
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Re: I have definitely progressed while on LDN

Postby MSnik » Tue Jul 24, 2012 8:08 am

Actually I can totally relate !! I walked into that MRI telling the tech "I feel great" and walked out the same way. 3 days later, when I got my results, I went into a downward spiral..not exactly depressed, but more shocked! Now that he wants to add Copaxone, the idra of going back on shots is actually depressing me....

I have been on 9 different LDN forums/Groups and dialogue with regular LDN users as well as Skip and his crew...that's where I'm getting my "no one is reporting new lesions" info from. I would think someone else is having tge same problem as me as well, but no where, can I find validation. All I can do is keep shouting out, hoping to hear that I'm not alone. I should change the question to:, if you found out you were having radiographical progression while on LDN, but still felt amazingly welli what would you do? I'm not convinced adding Copaxone is the answer.
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Re: I have definitely progressed while on LDN

Postby jimmylegs » Tue Jul 24, 2012 9:51 am

i hesitate to respond, but - clarification: interesting that you are not interested in nutrition/labs, and good luck with no further comment because i have no info on LDN. your assumption of hostility from others, and resulting backlashes are not welcome contributions to the discussion. we're all in this together and silos don't solve complex problems. just my opinion.
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Re: I have definitely progressed while on LDN

Postby patticake66 » Tue Jul 24, 2012 3:28 pm

MSnik....because of you I am tempted to call my neuro and ask for the results of my MRI...I don't want you to feel that you are alone...I find it impossible to believe that you are. I feel that LDN is so hyped up that when a person experiences lesions while on it, they are so disillusioned that they hold back from discussing it on the internet...and the opposite would be true for those whose lesion activity halted...again so excited about it that they want to tell the world. So there are probably way more sites that show the good rather than the ugly. I will surf and see if I can find what you are looking for. Remember, if LDN was that good, we would all be on it no matter what. Oh by the way, I do know that it stopped working for Sammy Jo Wilkinson. Google her and she will tell you her story.
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Re: I have definitely progressed while on LDN

Postby MSnik » Tue Jul 24, 2012 4:23 pm

Patticake-
Thats sweet of you to feel that way, but DONT DO IT! I wouldnt want you to experience what I am going through. I am actually very familiar with SammyJo's story. Its very sad what she has been through, although the last few posts I had read, she has had some success in feeling better with CCSVI. Im not a big believer in that either, but one cannot say either way if its a possiblity which may help others.

I also believe you are correct. If people are stable and doing well, they tend NOT to post. I am actually very involved in another health board, one where it is specific to MS, and I see thousands of posts a week which are usually distressed patients or "what if I have MS" type posts....not too many of them share good news. When they do, its reason for celebration! This is why, I went outside my primary board asking on several other boards, has anyone heard of this. Im sure somewhere out there are people who have gotten lesions on their MRIs while on LDN. Their has to be. Statistically, its almost impossible that no one else has encountered this.
If you find something, specific to MRI progression, I would love to know about it. Thank you. Meanwhile, Im telling everyone I have a bomb in my head. Im actually scared to death of "what if" another attack happens, obviously I wasnt aware of the last ones..Im trying to make light of this, but there is nothing funny about your neurologist telling you that in this exact area, you can lose your ability to breathe on your own and could wind up on a ventilator...Im scared to death.

He did it to scare me into trying Copaxone...but after meeting with the Copaxone nurse, its not likely that this is going to be a good drug for me- and so far, my insurance company hasnt even approved it. The nurse tells me im way too thin. I have too much lipoatrophy from Rebif injections and only have limited areas to inject...and she is concerned about my previous reaction to injecting... we are thinking we should give it a try if its approved, but quite honestly, if its going to take 6-9 months to start working, Im not sure I want to spend every day thinking about going home to injections...Im so screwed up. Ive changed my mind about it 5 times today....

anyway, your desire to prove to me IM not alone is appreciated..but please, dont put yourself through it.
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Re: I have definitely progressed while on LDN

Postby jgkarob » Fri Aug 03, 2012 3:39 am

Hi,
I had a huge relapse whilst on LDN. I was so cross about this that I just kept away from MS forums.
I have noticed that other people who haven't had a great result from LDN just post once about it and then don't bother with the LDN forums again.
I had been on Rebif for 8 years and it had worked well. I moved to another country and ran out of Rebif and didn't expect to be able to take it again and I felt great.
I started LDN and 5 months later had that relapse.
I was fortunate, in that my new neuro got funding for Rebif and I restarted it a few months later in 09 and then after that, added LDN.
I've only had a minor relapse since then, but had to stop LDN for other medical tests. So far, so good and I've kept the benefits - normal bladder, enough energy, but I miss those feel-good endorphins.
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Re: I have definitely progressed while on LDN

Postby MSnik » Fri Aug 03, 2012 3:53 am

Taking LDN and Rebif is a huge no-no! They contradict each other and youll get no benefits at all from LDN.

I was on Rebif for 6 years and wound up having to stop it because I developed NABs (neutralizing antibodies) It bascially poisoned me.

I have NOTHING against LDN. I feel wonderful- and truly believe that the reason Im so highly functioning with over 70 lesions is because I still take it. Nothing could make me stop taking LDN at this point....but the truth is, Im still developing lesions.

The only drug safe to take with LDN is Copaxone, which right now, I am considering adding to my regimen.

Im sorry you didnt do well on LDN, but you definately need to stop taking it with Rebif...
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Re: I have definitely progressed while on LDN

Postby jgkarob » Fri Aug 03, 2012 4:23 am

MSnik wrote:Taking LDN and Rebif is a huge no-no! They contradict each other and youll get no benefits at all from LDN.

I was on Rebif for 6 years and wound up having to stop it because I developed NABs (neutralizing antibodies) It bascially poisoned me.

I have NOTHING against LDN. I feel wonderful- and truly believe that the reason Im so highly functioning with over 70 lesions is because I still take it. Nothing could make me stop taking LDN at this point....but the truth is, Im still developing lesions.

The only drug safe to take with LDN is Copaxone, which right now, I am considering adding to my regimen.

Im sorry you didnt do well on LDN, but you definately need to stop taking it with Rebif...



It was in the 09 conference that new evidence was announced that it was just fine to take Rebif or any other beta-interferon with LDN.
I took it from 09 to just a couple of months ago without any problems. Here's the information from the conference
http://forum.ldnresearchtrust.org/index ... -together/

And the text
"Two of our medical advisers Dr Tom Gilhooly and Pharmacists Stephen Dickson give their comments.

Rebif + LDN why does it appear to be OK to take together in practice?

Dr Tom Gilhooly's comments......There is no evidence that Rebif and LDN cannot be taken together and many patients have used this combination. As they are both immune modulators, this would make sense.

Stephen Dickson comments......This is actually a difficult question - that involves a degree of conjecture.

Firstly, the easiest way to answer this question is probably by examining the current reason why some doctors state that Rebif should not be taken with LDN.

Some physicians have theorised that Interferon *suppresses* the immune system, and acts in a similar way to taking a low dose of steroids - thereby reducing the activity of the immune system, and the formation of lesions/number of relapses. As this is the "opposite" of the proposed mode of action of LDN, they say that the two treatments are incompatible.

In truth, the mechanism of action of Interferon beta -1a (Rebif) is not clearly defined -here is an extract from the product characteristics:

Q. How does Rebif work?
A. The precise way Rebif works is not known. Interferons, like Rebif, have many actions that affect the immune system. Some of these properties are thought to maintain and preserve nerve function. In this way, Rebif may help reduce the damage to the vital components of the central nervous system. Although there is no cure forMS, Rebif has been proven to slow the course of the disease.
Full article available here:
http://www.mslifelin...if.jsp#howdoesR
_____________________
So it can be concluded that the original stipulation that Interferon beta 1a is an immunosuppressant, is probably incorrect - as the mechanism of action is not clearly defined.
The true story is probably much more complicated - as interferon has a variety of actions in different cell groups. Some pro-and some suppressor.

In the same way, LDN has been proposed as an immuno-stimulant - via a mechanism of endorphin stimulation.

This is, once again, not entirely true - there has been no significant study that actually clearly demonstrates this full mechanism of action - the true story is likely to be somewhere in the middle.

For example, here is an article showing an immunosuppressant activity from opiate mediated endorphins:

Abstract
In this study we show that the opioid peptide β-endorphin exerts a tonic inhibitory effect on the proliferative response of splenocytes to the polyclonal mitogen phytohemoagglutinin throughout two separate sites of action: one central and one peripheral.
http://linkinghub.el...16557289400189U

It is true that patients who take LDN, seem to exhibit signs of an improved immune function - however, this could be a mixture of "upregulating" good cells and "downregulating" bad/damaged/malfunctioning cells.
_________________________
In conclusion, there is no clear evidence to prohibit the use of Rebif and LDN at the same time - so we must look to the evidence available from patients who have taken both.

It is clear that some patients who have taken both LDN and Rebif have had improved responses compared to people on either treatment alone. Personally we know of quite a few in the UK, and I am the LDN research trust has heard of many more. We have heard of effects like reduced side effects from rebif, longer times between relapse etc.

Finally, the personal test, if I had MS would I take both together?

The answer for me, personally, is yes. "
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Re: I have definitely progressed while on LDN

Postby MSnik » Fri Aug 03, 2012 4:41 am

This is one of those things that I wont even begin to argue about. You are entitled to what you read and understood~ I prefer to look at Dr Bahari's research and follow the advice of Dr Skip, from Skips Pharmacy.
What about cautionary warnings?

Because LDN blocks opioid receptors throughout the body for three or four hours, people using
narcotic medication such as Ultram, morphine, Percocet, Tramadol, Duragesic patch or codeine
should not take LDN until such medicine is completely out of the system. Steroids would counteract
the effects of LDN, and so should not be combined. LDN should probably not be taken during
pregnancy.

LDN should not be used by people already receiving interferon (Beta Seron, Avonex, or Rebif).
Because LDN stimulates the immune system and interferon suppresses it, the two therapies are
incompatible. The combination of these therapies does not cause any adverse reactions, but it is
believed that they cancel out each other’s effectiveness.

http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html

After my expererience on Rebif and then my experience on LDN- you couldnt convince me to consider taking them together. I felt like death after six years on Rebif...Ive felt better than I have in 10 years on LDN. I may be developing new lesions; but I feel and look awesome and have not one single clinical symtom~ I havent had a relapse since I started LDN, and was having them about once every two years on Rebif (which is the average for most patients). Interferon causes liver and WBC issues, while LDN doesnt.
You are most definately entitled to your opinion. I was at the LDN conference in Ireland last year~ There are several videos of it available if you care to research it. At that time it was advised NOT to combine the two therapies. I wish i had time to find and post them for you, but I am at work and not able to do so.

You know what though? As long as you are healthy and stable~ more power to you. How you do it is YOUR business and I hope it continues for you. I do hope youll get tested for NABs though....most doctors say it rarely happens and there is no need for testing. I spent 4 weeks in the hospital swearing it wasnt a relapse, but more of a viral type thing~ with no answers as to why I felt so horrible....when a MS specialist thought to test for antibodies...sure enough, as soon as they stopped giving me interferon, I felt better almost immediately. As time went on and it left my body, I felt even better...BUT 3 months later on LDN is when the real changes happened. I feel like I did pre-MS. I have energy, I walk, exercise and look great, and even if Im developing lesions- im not having any sytptoms...I think its all due to LDN.

So, best to you....be well. Stay well....
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Re: I have definitely progressed while on LDN

Postby jgkarob » Fri Aug 03, 2012 5:57 am

Er, this isn't my opinion. It's the advice from the LDN Trust. I don't know what's right or not, but they counteracted the old advice at the conference in 09 and there's still a lots of arguments about how both drugs work. It seems impossible to know for sure which is correct, except that in the UK, a lot of people are taking both together. Rebif isn't an immune suppressant. It's an immune modulator and I'm sorry that you had an awful time on it.
There's no argument really - you either accept the old advice or the new advice and choose to take both together or not. It's quite safe though to take both.

I'd be really interested to read the latest advice contradicting the 09 conference advice. I couldn't find any information on the LDN Trust site and as an LDN advocate, I need to know if new information is available as I receive requests from people looking for advice.
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Re: I have definitely progressed while on LDN

Postby Amir » Fri Aug 10, 2012 1:50 pm

MSnik wrote: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 aspects are under control.


It might be interesting for you to read pages 5 & 6 of this thread
post196373.html#p196373
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Re: I have definitely progressed while on LDN

Postby MSnik » Sun Aug 19, 2012 5:11 pm

Well I read pages 5 and 6 of the thread and im completely confused. Why did you think this might help me?

I have not one single symptom. I am a 1 on the EDS scale. I have no pain, I have no issues. BUT I now have over 100 lesions, 6 black holes- and all of them are on my brain and brainstem. My doctor is worried that the next big attack could be the disabling one.....what does the thread have to do with my question?
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Re: I have definitely progressed while on LDN

Postby Amir » Sun Aug 19, 2012 5:28 pm

MSnik wrote:Well I read pages 5 and 6 of the thread and im completely confused. Why did you think this might help me?

I have not one single symptom. I am a 1 on the EDS scale. I have no pain, I have no issues. BUT I now have over 100 lesions, 6 black holes- and all of them are on my brain and brainstem. My doctor is worried that the next big attack could be the disabling one.....what does the thread have to do with my question?


I cannot quite remember but I thought that I have amply spoken about the fact that Brain lesions do not equate to disability as you appear to confirm!
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