Low Dose Naltrexone - LDN

Everyday living
21

[quote=“Campion”]

Chrissie,

l have been taking LDN for the last 5yrs. lts certainly not a cure - and nobody has said it is. But it certainly makes life easier - and helps you cope with ms symptoms - brain fog - bladder control - fatigue - muscle pain.

LDN boosts your endorphins - and gives you a ‘feel good’ more positive outlook.

l take it because it makes me feel brighter - more positive and more able to cope.

lt puts a smile on my face. [/quote]

Well thanks folks for the very useful comments. Have to say some of the facts re patents, conferences, scientific/finiancial interest is a little too much for me to digest.

However, I like the idea of having a smile on my face that Campion describes.

I just wonder if LDN can help me to overcome these flippin’ negative feelings that sometimes overwhelm me - the fatigue, lack of motivation and constant brain fog that entirely envelopes me.

Is there any other, more recognised in MS, drugs that give this feel good factor?

At present, the only meds I take relating to MS is Gabapentin.

Other daily meds I take are to control high bp & high cholestrol. I am 60 and was diagnosed just over a year ago.

22

Hi Chrissie

It takes a long time to come to terms with a diagnosis of MS so give yourself time and your smile may reappear.

Counselling may help (ask your GP/MS Nurse for a referral).

I find HBOT (hyperbaric oxygen treatment, which is available at my local MS Therapy Centre. A discussion about The Therapy Centres can be found at: http://www.mssociety.org.uk/forum/everyday-living/ms-therapy-centre****) helpful, it lifts my mood and I have more energy after treatment.

Unfortunately with MS what works for one may well not work for another.

Good Luck!

Anne x

23

Just one then Geoff.

As for why this company has purchased patents for a process rather that a drug we will have to wait and see. I have no inside track on their business plan.

I think however we are in danger of taking over this question with a subject I know we disagree about, the value of evidence based medicine so I suggest if you wish to continue the discussion on that subject you either do so privately or start a new topic. Perhaps however you might like to sign this petition to at least get those things that do get tested to licencing standards fully and honestly reported on.

http://www.alltrials.net/

24

I don’t want to intrude on your discussion, but I was under the impression that most drugs for MS were prescribed “off label”. Admittedly, these generally relate to symptom relief, which is clearly fine and can’t see a problem as long as they work.

With the amount of new treatments becoming available it’s probably time to stop using the “most” word and promise to stop.

This is part of list posted on the MSRC site, dated 22 February 06, and appreciate things have moved on a fair bit since then, but the best I can do.

MS Disease-Modifying Meds"

( Approved Meds )

  1. Avonex (interferon beta 1a)
  2. Betaseron (interferon beta 1b)
  3. Copaxone (glatiramir acetate)
  4. Novantrone (mitoxantrone)
  5. Rebif (interferon beta 1a)

Treatments ( not ) approved for MS but used “off label”

  1. Amantadine(Symmetrel)
  2. Amitryptilene
  3. Azathioprine (aka Imuran)
  4. Cyclophosphamide (aka Cytoxan)
  5. Desmopressin Nasal Spray
    6.Detrusitol
    7.Doxycycline, Amoxicillin, Rifampin, Metronidazole (Vanderbilt protocol)
  6. Doxycycline, Roxithromycin, Metronidazole (David Wheldon protocol)
    9.Gabapentin
    Immodium
  7. Intravenous Immune Globulin (IVIg)
    Loperamide
  8. LDN
  9. Methotrexate
  10. Modafinil
    Movical
  11. Mycophenolate mofetil (aka Cellcept)
  12. Plasma exchange (aka plasmapheresis)
  13. Pregagalin
  14. Sativex
    18.Serc16
    19.Stemetil (prochloperazine)
    20.Tegretol (Carbamazepine)
    21.Tropsium Chloride

No mention of baclofen?

25

And why should you not join in the discussion, whammel?

Acually, your post raises an interesting point (and one that could run and run, or drop stone dead).
If you treat a symptom, are you treating the disease that caused it, or just alleviating the symptom?
Some would say that a lot of the time, all doctors really do is to treat the symptom.
This has come up before in the context of the DMDs. If we assume that they reduce the frequency of relapses, what are they actually doing? Sure, they do not replace damaged myelin, so it is now an argument verging on the philosophical as to whether altering the course of the disease is treating the disease, or treating one of its primary symptoms.

No, I am not going to pretend that I have a quick answer to that one, but if we look at your list of medications used “off-ticket” then the question of treating symptom or disease comes right back. I have no intention of even trying to work through the whole list, but have just spotted a couple.

Gabapentin/pregabalin. These are not prescribed as “MS treatments” but as treatment for “neuropathic pain”. OK, so the neuropathic pain may well be caused by MS (certainly is in my own case), but it is the pain that is being treated, not the MS.

Immodium. This is prescribed as a treatment for diarrhea. Again, the diarrhea may be caused by MS, but it could be caused by other things (a combination of curry and lager comes to mind), so we are back to treating the symptom, rather than the cause of that symptom. Immodium is an interesting one, in that - a) it is supposed to cross the blood-brain barrier and come straight back out again, and - b) as an opioid, it could potentially interact with LDN.

Personally, I find the interactions interesting, in that the “prescriber’s bible” (the BNF) list the interactions between one drug and another - but not the interaction between two given drugs in the presence of a third (let alone the potential interactions when a cocktail of drugs is taken). Seeing that I take a cocktail of medication for my heart condition, I tend to raise the question with another Health Professional every time a new item is added to the prescription. The answer is always “NO”, and I always treat this as “We don’t know of any”, which is not the same thing.

I suppose that this should really be the subject of a separate thread - if anyone else wants to join in.

Geoff

26

Hiya folks - my input into the LDN debate - I took LDN last year and felt good on it but then I decided (idiot) that it wasn’t benefitting me that much and stopped taking it. I also was on cipralex for depression and was feeling good so took a “drug holiday” and had a great summer to be honest. Come September time I had a bit of a rough patch and up to Christmas felt really rubbish, really low and not well… I’m back on liquid LDN (2 1/2 months) and 10mg Cipralex and thank God, life is certainly feeling alot better again…bladder and bowel seems to be working well, the mood is uplifted again, think I suffer from SAD, so I will be staying on LDN and maybe have a break from cipralex come late Spring when the days are brighter. This is my story and any views would be appreciated…

27

So glad you posted this Redman - as l was feeling sorry for the original poster Chrissie as her ‘question’ about LDN - from those in the know who actually take it - as usual got ‘high jacked’.

l have never been offered dmd’s - so know nothing about them - so l would never make any comment on them. l have - in the past tried Baclofen/Tizanidine/Gabapentin and l know how ‘out’ of it they made me feel - so l can comment on them.

l did run out of LDN - and was two weeks without - and was surprised how better l felt when l resumed taking it. l had forgotten how much it had benefitted me.

Chrissie - lf you need any help re LDN - then Whammel is the best person to pm - or me. lt was Whammel whose experience of ldn helped me.

Also look into whether any of your present meds are working against each other. With LDN you can not take opiates - such as codeine. That means that you can take codeine during the day but not in the evening when you take your LDN. LDN stays in your body for 4hrs.

Don’t forget to also take Vitd3/vitb12/magnesium - as these are so important- will help with depression/SAD.

F

28

hi chrissie

i would certainly recommend ldn it has helped me immensely with fatigue and mood swings so much so that i wrote an article in our local newspaper and did a programme on utube! this has in turn led to other sufferers contacting me for info which i have happily given if i can help only one person escape from this awful fog feeling that ms gives you then that makes me happy! try ldn chrissie i am glad i did

lozzie

29

The effects of ldn can be quite subtle and it’s sometimes easy to forget small improvements over time. I made sure I wrote everything down before starting the drug to help remember just how bad things were getting.

My MS is for life and so is ldn.

30

Thanks Whammel - I felt so bad last month that, I will stick by my LDN from now on and take no chances to be honest… There have been so many positive reponses to LDN, it is very difficult to discount it as placebo or a fairytale, by no means a cure but if it puts us in a better place - who’s to argue…?

31

Quite right and if it is a placebo (and who cares if it works) we are in good company, because an estimated 100,000 people take ldn for a variety of conditions. No idea if it’s true mind you.

Glad to hear you have been able to pick up where you left off.