Hi - I am new to the forum, have had cll for over 10 years, still at stage zero.
I have tried various supplements and treatments, have been on ldn 4.5 mg for about a year. My white blood cell count went down 30% in this last year. I had taken it before and stopped, tried a few other things and it crept up gradually. Any one else been taking ldn for cll? Al
I took LDN for a while (2-3 months) in dealing with a different cancer - a solid tumor cancer, not a blood cancer. And at your dose of 4.5 mg. I did have CLL at that time. I wasn't aware of it doing anything one way or the other in terms of CLL. I don't think it was hurting me CLL-wise.
There is a cancer clinic in Toronto (Medicor) that I know has one or some CLL patients on LDN - but I think also in conjunction with low-dose ibrutinib, in which case hard to know if the LDN is contributing anything, since the low-dose ibrutinib could be controlling/managing the CLL.
I take it you are not aware that your WBC is comprised of five different white blood cell types and we need to track our Lymphocyte count to see what's happening with our CLL? You mentioned a 30% drop, but what changed and where did the missing WBCs go? Did they die or did they relocate to your nodes, spleen and/or none marrow, where they are harder to eradicate? Also, was the 30% drop a change from say 20 to 14 (fairly inconsequential) or from something like 200 to 140?
I take LDN but not for CLL. I have Hashimoto’s and read about it’s benefits so my functional medicine doctor prescribed it for me. I take 1 mg and since being on it my thyroid antibodies have greatly decreased. It’s also supposed to help your immune system. Not sure it’s doing anything for the CLL, but am pleased with the thyroid effects.
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