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LDN

I have been using Low Dose Naltrexone for a few years now as I decided to stop using Betaferon. I was walking unaided before I started on Betaferon and put up with the flu-like symptoms for some months while my mobility worsened rapidly. I tried Copaxone but experienced the same difficulties. Demoralised by this and having to give up work as a Staff Nurse, becoming a Nurse Advisor instead, to accommodate my mobility problems, I then started taking Low Dose Naltrexone. This acted to boost my immune system rather than suppressing it and I began to feel well again. My mobility is the same but shows signs of improvement now as I exercise regularly using a mini exercise bike. I’d like to know if there is anyone out there who has had a similar experience of using betaferon or Copaxone. Cheers for replying if this is the case and at least I will know that I’m not the only one who’s felt like this.

Hi Tina,

Any of the Interferon’s does not suppress the immune structure but are immune modulators; they change or modulate the IS.

No you’re not the only person to get bad reactions to Betaferon but MS is the end result with many different ways to get there. MS is not necessarily an auto-immune complaint (my reasoning on the Etiology of MS).

Some peoples MS is caused a faulty Gene; some are caused by reactions to a virus; some are auto-immune; I’m sure mine was caused by the reaction I had to a smallpox vaccination; how we get there is different.

So therefore the answers are different; any interferon will only reduce attacks to those it effects; does not affect everyone. Do you get attacks as this is the only symptom affected; on saying only for many this is brilliant as less attacks; less disability.

LDN is magnificent for many people.

George

Hi Tina,

There was a speech at the 09 LDN conference about the differences and similarities between beta-interferon and LDN. It had been thought that it boosted the immune system in RRMS, but this has changed.

It’s now thought that they both strengthen the Blood/Brain barrier.

You may have been a non-responder to DMDs. There has been some research about how some people are super-responders and how some are non-responders. The non-responders progressed and lost mobility and still had relapses.

I take LDN and Rebif and have done since 09. The LDN works on my bladder and it’s much more reliable now. No more Tena pads!

I hope LDN carries on working for you.

best wishes,

K

xx

Yes I’m happy with LDN and it enables me to continue with exercise and strengthen my mobility as much as possible. It appears that I am a non-responder and I am glad that this reaction has at least been discussed, rather than dismissed by experts…my consultant in particular unfortunately. Many thanks for your message. Best wishes Tina x

Hello everyone

I’ve just restarted on LDN after using Fampridine since April. Initially it worked really well and my consultant was impressed with the improvement in my mobility. However these last few weeks haven’t been good so I felt I had to stop. I’m really hopeful that the LDN will again work for me as before. Glad I gave the Fampridine a go even though the effects were rather short lived.

Has anyone else restarted LDN after trying Fampyra? Would love to hear from you if you have.

Cheers from Tina W x

What dose of ldn are you taking? The reason I ask is that you may need to start on a lower amount and slowly increase, as you build up tolerance to the drug.

Incidentally, it’s ok to combine ldn and fampyra.

tysabri and ldn ok

ellie

Hello Whammel

Yes I have started on a lower dose as advised and will slowly build it up to my preferred dosage. So far it’s working well again and I’m gradually getting back to how I used to be on LDN. Also, I was advised by my consultant to not take Fampyra with LDN, so I won’t be doing that.

Think I’ll be getting back on track again…eventually.

Tina W x

Glad to hear the patient approach is beginning to pay off and hope the improvements keep coming.

Cheers I’m sure they will

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