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Low Dose Naltrexone Safer Alternative to Ruituximab?

Discussion in 'General ME/CFS Discussion' started by bertiedog, Aug 25, 2014.

  1. bertiedog

    bertiedog Senior Member

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    I wanted to post about my experiences with LDN changing my immune system and endocrine system and have come to the conclusion it is a great alternative way of modifying these and obviously far cheaper and safer than Ruituximab.

    I am writing notes how exactly LDN works (have got a book on LDN on my Kindle) and it talks about how the immune system is constantly interacting with the neuro endocine system. It states "These bi-directional interactions influence antibody and cytokine responses, cytolytic activity, lymphocytes proliferation, tissue localisation of lymphocytes,hypothalamic-pituitary hormone secretion and neural signal transmission. Best illustrated in the body's response tostress.

    Stress can either suppress or enhance immune responses. " (The promise of Low Dose Naltrexone Therapy by Elaine Moore et al)

    As a bit of background on myself I am 66 years old and was given the diagnosis of ME/CFS in 2000 when I could no longer carry on teaching to my extreme ill health. One of the first things that were obvious was that my adrenals were whacked and my thyroid wasn't working well. I could never walk for longer than 20 minutes but this is slowly improving but still a way to go. I was given replacement steroids in 2002 by a private Endo because of my extreme symptoms and also dessicated thyroid. My doses settled around 6.5 mg Prednisolone (had been less 10 years ago) and 2 grains Nature-Thyroid plus 25 mcg thyroxine for the Hashimotos.

    I started just 1 mg LDN on 17 June this year and within 4 weeks little signs were there that my thyroid was changing (sweating attacks and raised pulse). Unfortunately I missed these signs as it was very hot weather at the time. In July I started herbal treatment for Lyme disease, and in July started Cats Claw and Andrographis.

    Over the past few weeks things have gone into overdrive in a quite unpleasant way. Terrible sweating attacks making me soaking wet, high bp and pulse. Eventually last week I felt so ill that after looking through my diary the penny dropped and I realised what had happened and I started drastically reducing my thyroid and adrenal meds. I still don't know what I need but it looks like it might just be the 0.25 mcg thyroxine if at all and I am still finding out what steroid dose I need. So far today its only been 1 mg Pred and 2.5 mg hydrocortisone, a big drop. I expect to need a tiny bit more of h/c later in the day to support my body.

    It would seems that in my case there are several factors that have caused my HPA axis to be whacked. Firstly I was mercury poisoned, this started to happen from age 15 when I reacted badly to the TB jab which would have used thimerasol which is 50% mercury. Following on from that I had lots of amalgams done around the age of 18. Around this time I would get severe nose bleeds and migraines started too. The mercury issue would have continued to get worse as each amalgam was placed, I ended up with 14 amalgams and one gold crown that had amalgam underneath. These were all removed over 10 months in 2002/3 and I chelated using Andy Cutlers protocol but know that it took 5 years for my lymphocytes to stop overreacting to mercury.

    In 1975 after my 3 rd pregnancy I lost 4 pints of blood and they only put 2 back which would have caused a big shock to the pituitary.

    In 1996 I think I got bitten giving me Lyme disease and possibly Ehrlichia too. Following on from that I picked up Campylabactor poisoning and other nasty infections. It was during this time my adrenals took a real nose dive and the thyroid too so in my case it has all be autoimmune and the LDN has gone a long way to sorting this out with the probably help of Cats Claw.

    So if one has sorted out any heavy metal issues, reduced other stressors in one's life to a manageable level then LDN can do the rest and counter any autoimmune issues.

    I also find that I don't have to take the LDN every day and I have heard from others too they only need it every other day.


    Pam
     
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  2. deleder2k

    deleder2k Senior Member

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    A lot of people that I know, including myself have tried LDN. For some it relieved pain, but for none did it have an impact on fatigue. I tried it for 1 year without any effect. I'm sure LDN is safe, but it is difficult to compare LDN and Rituximab. As shown in the studies from Norway, Rituximab can make people completely healthy again. People that have spent a decade in their bed feel like they are COMPLETELY healthy again. From my understanding, LDN have an impact on some individuals, but the main effect is that it eases pain, not fatigue and other symptoms.
    Rituximab is administrated in hospitals where patients are monitored and followed up carefully. From my understanding it is not accurate to say it is dangerous if it done in a proper manner.
     
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  3. SOC

    SOC Senior Member

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    LDN has a completely different activity from Rituximab, so this is an apples and oranges situation. LDN is not a cure for a majority of ME/CFS patients, and is probably not dealing with the root problem, just a symptom. Rituximab may be addressing the root cause, which is why it is making a substantial number of patients completely healthy again.

    LDN appears to be a very valuable treatment for ME/CFS which is benefiting many patients. IMO, it should probably be used more than it currently is. But it is an entirely different treatment and not directly comparable to Rituximab.
     
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  4. bertiedog

    bertiedog Senior Member

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    I understand what you are saying but it is making me feel healthy for the most part and its still really early days. I actually feels very well with a few down periods when my adrenals are still a bit stressed but it doesn't last long and once off thyroid meds altogether I think the adrenal thing will settle down.

    I really do wonder if the reason many don't respond is that they have something like an environmental toxin to contend with but they don't know, common problems like heavy metal poisoning and/or PCBs etc. It would be interesting to know if those that don't seem to benefit have had tests to see if there are heavy metal issues for instance.

    Its just a thought that something like this might stop them from responding whereas I dealt with this over 10 years ago although I still have the borrelia problem plus a co-infection.

    I can now go shopping without feeling half dead and enjoy my walks and I of course its still such early days (almost 10 weeks). I would also think it could be helpful if people read The Promise of Low Dose Naltrexone because the science is all there and perhaps some of you would challenge the science behind why it is effective for so many conditions?

    @SOC I wonder what you think about the above. For me it feels likes its reversed a huge amount of stuff even though I have to eradicate the borrelia.

    Pam
     
  5. bertiedog

    bertiedog Senior Member

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    @SOC Forgot to say that for me it has had a massive effect on the fatigue I have experienced in the past. Cannot put a figure on it yet cos its still too early but when I was out this afternoon for instance I had been on my legs for an hour shopping and just felt the need to sit down and eat something and very quickly I was up and about again. I have no PEM.

    Psm
     
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  6. SOC

    SOC Senior Member

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    Great news! I'm glad it's working so well for you. :) Many people are reporting an improvement in symptoms with LDN. I'm looking forward to trying it myself.
     
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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    LDN has reduced fatigue for me, considerably!

    Sushi
     
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  8. deleder2k

    deleder2k Senior Member

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    Nice to hear that, Sushi! I think everyone should try it, as it is considered safe and comes with almost no side effects. Nothing to lose.
     
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  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hmm, I have been on LDN since 2009, perhaps that is why I am more functional than many?

    GG
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wish it was cheap here in Australia, it costs more than antivirals here but then dhea and melatonin and other treatments that are made here from a compounding chemist cost a small fortune too.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Can't you get it as a generic 50 tablet from an ordinary chemist? That is what I do and dissolve it in 50 ml of distilled water. Use a 3 ml med syringe to suck up a dose. It costs about $1 a month I think.

    Sushi
     
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  12. alex3619

    alex3619 Senior Member

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    I don't think you can really compare LDN with Rituximab. Totally different. Yet I do agree everyone should try LDN as it is very inexpensive, so worth a trial.

    @heapsreal is right though, LDN here (Australia) costs more like $1 a day, not $1 a month. That is still cheap though compared with many other options.
     
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  13. bertiedog

    bertiedog Senior Member

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    Here in the UK it costs just £9 per month for the liquid form (so easy to get the dose right) and an initial one off consultation fee with a GP in Scotland that costs £35. This was through the link from LDN Research and Clinic 58 is where I completed a questionaire. The GP then rings you up to chat to you about your condition and diagnosis and offers some advice re LDN. You do have to send in proof of your diagnosis though, a letter to my GP from Dr Myhill was what I forwarded but as long as one got something in writing it should be fine.

    I wonder why it is so expensive in Australia? @Sushi's suggestion is an excellent one.

    Pam
     
  14. bertiedog

    bertiedog Senior Member

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    I forgot to mention another benefit I have experienced due to LDN is that it is allowing me to tolerate quite high amounts of herbs without too many bad effects. Previously when on a full dose of replacement steroid I would always feel that the herbs were blocking the effect of the steroid but since the LDN kicked in I haven't experienced that at all. For instance I am currently up to Andrographis 3 x 3 daily, Cats Claw 2 x 2 and Japanese Knotweed 1 x3.

    I am not sure if the following might explain this, again from the book the Promise of LDN where the authors talk about nitric oxide saying that as a free radical nitric oxide is one of the major contributors to reactive nitrogen species. This means it can act in 2 different ways - first as an antioxidant scavenging oxygen free radicals and protecting cells from reactive oxidative insults (similar to rusting in a car) and second directly reacting with proteins especially iron-containing enzymes such as guanylate cyclas, cytochrome P450 metabolism (necessary for the metabolism of herbs and drugs) and cyclooxygenase (which leads to inflammation) to modulate their functions.

    Also NO can react with the lipid surface membrane of cells to induce lipid peroxidation, a process that causes the accumulation of melanin deposits on the hands and other signs of aging. Indirectly the combination of NO and superoxide molecules can form highly reactive intermediate compounds such as peroxynitrite that can indue DNA strand breaks (mutations), lipid peroxidation and protein nitration.

    The opiate antagonist naltrexone used at low doses may inhibit nitric oxide synthase activity. This in turn may decrease the formulation of peroxynitrites which has the potential to decreate glutamate neurotoxicity.

    There is a lot more in the book about the role of excess glutamate and how LDN can stop it spilling into some cells so I also wonder if this is one of the reasons why LDN has helped me have less migraines.

    Pam
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  16. bertiedog

    bertiedog Senior Member

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    I realise Rituximabi is a very different medication but I was thinking also of how LDN is supposed to regulate or strengthen the immune system to become more normal. In the book the authors say that in general it is now felt that autoimmunity happens because of a weak ineffective immune system partly because of genetic factors but more likely because of environmental assault. If LDN can indeed stop this reaction isn't that similar to what Rutuximab is supposed to do. (As you can tell I don't know too much about it just the general idea of why it might work).

    I have read how many people with MS say it has changed their lives and have read about the similarities between ME/CFS and MS.

    Trying to get a better understanding of what is going on to make LDN an effective choice for us.

    Pam
     
  17. NK17

    NK17 Senior Member

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    LDN has not touched my PEM nor my chronic aches and pains level.
    I still take it every other day, in the morning, otherwise it messes up my already very fragile sleep.
    I was lucky to have it prescribed by my rheumatologist, for fibromyalgia (what I call the myalgic part of ME ;).
    He looked it up online and was convinced by the small clinical study by Jarred Younger @Stanford.
    My ME specialist, Dr. Kogelnik, is all for it too, probably for its possible immuno-modulatory action.
    Still my NK cells function is at the bottom of the barrel and I wouldn't think that LDN and Rituximab are interchangeable disease modifying therapies.
    Agree that LDN should be more known and more widely prescribed.
     
  18. bertiedog

    bertiedog Senior Member

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    @NK17 I was just wondering whether you are taking any thyroid medication at all and whether you have been tested for heavy metals?

    I have found that I still do need a tiny bit of T3 and T4. When I didn't take these this morning I ached all over but once I took just 6 mcg T3 and 25 T4 within a short while all the aching stopped so I can see that LDN on its own wouldn't cut down all the pain in the body if what one really also needed was a very small amount of extra thyroid/adrenal support.

    Pam
     
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  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I would still have to buy them online though, be too hard to prescribe it here?
     

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