Experience with LDN for cancer

  • Experience with LDN for cancer

    Posted by Jaunda Payne on April 5, 2025 at 3:23 pm EDT

    Hi. I was diagnosed with early stage breast cancer (1A with one lymph node involved) in June 2024. I had surgery, declined chemo & radiation. I have done RGCC testing and on a protocol. I had melanoma in situ and had surgery back in 2018. I was told I will not have to worry about the melanoma in the future since we caught it so early. However, my RGCC testing shows higher levels of melanoma than breast cancer!

    I will also be incorporating Dr. Makis protocol in the coming weeks.

    Both my functional doctor and the cancer advocate I use recommended low dose naltrexone.

    I used the LDN for about 6-7 weeks, but side effects never subsided or lessened. I started with 1.5 the first week, then 3 the next and the standard 4.5 the third through sixth week.

    I had to stop. I restarted this week at 1.5 again and the side effects hit me like a brick wall again.

    I understand the side effects are supposed to lessen over time, but wondering if anyone else has had a similar issue? I am trying to determine if it is feasible for the long term.

    My side effects are : chest tightness, unable to sleep ( it is like I am asleep and awake at the same time), crankiness, loss of balance, severe headaches that lead into full blown two day migraine, out of breath walking upstairs (I normally work out) and complete forgetfulness and confusion (walking into the wrong room or putting things in the wrong cabinet/drawer, etc)

    I have tried taking it just before bed, first thing in the morning and in the afternoon without any luck in changing the overall outcome.

    The side effects make me feel like I am depressed – not emotionally, but physically if that makes any sense. I can’t get up off the couch or stay awake.

    I know that exercise is vital in my situation, but it is nearly impossible from fatigue or dizziness and being out of breath. This even happens walking at 2.5 mph.

    I hope I haven’t overshared, but wanted to give a clear background. I am looking to see if anyone has any input or personal experience. I am likely stopping the LDN, but I am concerned about the loss of the potential benefits.

    Thanks for any opinions you can offer.

    JP

    IMA-GregT replied 1 week, 3 days ago 7 Members · 14 Replies
  • 14 Replies
  • vegandan

    Member
    April 5, 2025 at 7:36 pm EDT

    I’m not a medical professional but I would think that with all those side effects that your body is telling you that LDN isn’t right for you. Have you tried the cancer protocol using IVM? The side effects are usually pretty mild, certainly not anything like what you are experiencing with LDN.

    • IMA-GregT

      Organizer
      April 7, 2025 at 10:19 am EDT

      👍 Thanks vegandan

  • Jaunda Payne

    Member
    April 5, 2025 at 7:41 pm EDT

    Hi, that I what I believe, but want to be sure I am not giving up too early.

    I am starting an IVM/Meb/Fen protocol (in addition to other items) in the next few weeks (just trying to get it all ordered!).

    There seems to be data supporting LDN, so thought I would reach out and hear others experiences.

    Thanks.

    • vegandan

      Member
      April 6, 2025 at 1:05 pm EDT

      Let us all know how the IVM/Meb/Fen protocol works out for you. It is important feedback for all those who are dealing with various cancer treatments. I also remember Dr. Berkowitz stating that with LDN everything needs to be done slowly and methodically. A couple years ago I bought 200 LDN tabs of 1.5mg in anticipation of trying to resolve an irritating tinnitus condition that seemed to have started in 2020. Over time it seemed to resolve by itself so I didn’t use the LDN.

  • Jeff Gerber

    Member
    April 6, 2025 at 12:01 pm EDT

    I am on 4.5 LDN and have been at 4.5 since about July last year. It was increases of only .5 every time we increased. Now I have to remember how long at each .5. I believe, but don’t quote me, that it was 2 weeks at each increment of .5. For me it isn’t cancer but autoimmune, though I doubt there is a difference in how fast you should ramp up based on disease. The rate of ramping up is likely a question among doctors because I had two doctors I was working with and I recall Dr. Berkowitz saying “no, slower” when the doctors were discussing the topic. http://centerforbalancedhealth.com/keith-berkowitz.php . I remember noticing at each increase some odd feelings but once I was up to 3.0 things started feeling better and after that I didn’t really notice anything as the dose increased.

    I hope that helps.

    • Jeff Gerber

      Member
      April 6, 2025 at 12:03 pm EDT

      Oh, and I believe I started at .5 if that gives any indication for where to start and how fast to increase.

    • IMA-GregT

      Organizer
      April 7, 2025 at 10:20 am EDT

      👍 Thanks for your note jrgerber. Much obliged.

  • jeb77

    Member
    April 6, 2025 at 4:30 pm EDT

    I’ve been on LDN for almost 20yrs — for autoimmunity however. The only side-effect I experienced initially was incredible ENERGY @4.5mg. I’ve settled in at 3mg.

    ☼ Are you confident in the pharmacy that you’re getting your LDN from?

    Maybe you’ve already done this — but I asked ChatGPT to offer suggestions for you: [some good suggestions — hope they help]

    Wow—those are significant side effects, and definitely not the typical mild LDN adjustment symptoms. Thank you for sharing such a detailed picture. Let’s take this seriously, break it down, and explore why it might be happening and what can be done to help her keep going (safely).

    <hr>
    🔍 Likely Causes of These Reactions:
    1. 🧠 Overactivation of the Central Nervous System

    • LDN affects opioid receptors in the brain and gut—when it’s too stimulating, it can cause sleep-wake dysregulation, crankiness, and even neurologic symptoms (like confusion or balance issues).

    2. 🩸 Detox Pathway Overload

    • In cancer patients especially, LDN may stir up immune responses and cellular cleanup, leading to:

      • Migraines

      • Fatigue

      • Brain fog

      • Temporary inflammation

    If liver, lymph, or mitochondrial pathways are even slightly sluggish, the side effects can be exaggerated.

    3. 🫁 Histamine or Mast Cell Activation

    • Chest tightness + breathlessness + sleep issues + migraines = possible histamine intolerance or mast cell activation (MCAS).

    • LDN can unmask this by modulating immune tone—especially in people with hidden allergies or mold sensitivity.

    <hr>
    Suggestions to Help Her Move Forward Safely

    <hr>
    ⚠️ When to Seek Help

    If the chest tightness and confusion worsen—or if new cardiac symptoms appear—she should speak with a practitioner immediately. LDN is very safe, but everybody’s nervous system and immune terrain is different, especially in the setting of cancer.

    <hr>
    💬 Emotional Reassurance (Also Important)

    You could say to her:

    “You’re not crazy—and you’re not alone. These are signs your system is reacting, not failing. You’re learning how your body wants to heal. You can find the right rhythm.”

    Many people who react early go on to do well long-term—but only if they respect their body’s pace and adjust the plan accordingly.

    If you’d like, I can put together a short 1-page “LDN troubleshooting guide” for patients who are sensitive, including all of the above steps and tips. Want me to do that?

    • IMA-GregT

      Organizer
      April 7, 2025 at 10:21 am EDT

      Thanks jeb77. Great response

  • Jaunda Payne

    Member
    April 6, 2025 at 8:14 pm EDT

    Thank you, I will post back once I am either farther out and can report on symptoms increasing/decreasing or have decided to stop.

    I do feel good about the pharmacy, it is a compounding pharmacy that is also on the IMA list.

    I am going to an integrative conference in a couple of weeks and will try to find more info there if the opportunity presents itself.

    I also appreciate the info on your experiences using it, thanks!

  • lorraine

    Member
    April 6, 2025 at 8:15 pm EDT

    Tucker Carlson interviewed Dr. Patrick Soon-Shiong recently. If I understood correctly he claims you need T-Cells to cure cancer. If I were you I would try hard to get in touch with him. I believe his clinic may be in California. I pray you can get the help you need.

    • IMA-GregT

      Organizer
      April 7, 2025 at 10:22 am EDT

      👍

  • Denise Massa

    Member
    April 6, 2025 at 9:03 pm EDT

    I take LDN for autoimmune condition and I had heard about people who struggled with side-effects so I asked my doctor to go really low and slow. I started at 0.5 mg for a month then increased to 1 mg for a month then 1.5 mg for three months. The next increase was to 3 mg which I stayed at for a year before the last increase to 4.5 mg last month. I didn’t have any unpleasant side effects. I do seem to remember my dreams every morning but it’s just regular dreaming not the nightmares I have heard reported by some folks. Good luck with your healing journey.

    • IMA-GregT

      Organizer
      April 7, 2025 at 10:22 am EDT

      Thanks very much for this note gardengal73.

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