CLL Alternatives

Low-Dose Naltrexone for CLL by Prescription Only

Posted by: Denise on: November 15, 2010

Naltrexone is available by prescription only, whether for chronic lymphocytic leukemia or for any other condition.  In its low-dose form, naltrexone is available only from a compounding pharmacy.  It is important that you NOT get naltrexone in its slow-release form.  You want to get all the benefits of your dosage while you sleep.  Here is more information about how to get your prescription low-dose naltrexone.

Getting the prescription. What might be even trickier than finding the right compounding pharmacist is getting the prescription in the first place.  Early in 2008, I made a special appointment with my local conventional M.D. with the express purpose of getting a prescription for LDN (low-dose naltrexone).  I came to the office, armed with pages of info from the LDN web site. But my doctor, open-minded though she may be, told me that she would confer about it with my hematologist.  Fair enough.

Too risky? Weeks later, at my next hematologist visit, this doctor informed me that she and my internist had deemed my request for LDN as too “risky.”  RISKY!!! For whom?  Certainly not for me!  (Or for anyone with CLL leukemia.)  There are virtually no side effects from LDN.  Some people report vivid dreams in the first nights on the pills.  I experienced nothing — no side effects at all.  I figured that the “risk” was to these doctors’ licenses to practice, as I cannot reason why else it would be “risky.”  As compared to what?  Chemotherapy?

Find a good alternative practitioner. My next stop was to confer with my alternative M.D. in New York.  He gladly prescribed the LDN.  I get it from the Hopewell Pharmacy in New Jersey.  I believe that he’d recommended it a year earlier, but I’d hesitated to start it along with all the protocols and regimens he’d advised at the time.  Long story short is that I’ve been on low-dose naltrexone ever since, with no side effect –  and with very stable results.

Has this been my magic bullet? A panacea?  I wish I could say so, but I truly can’t be certain.  I’m not willing to give it up to find out.  Please read more on this site about all the other things I’ve done and that I do to both maintain my health — and to work to achieve cancer-free status.

One more thing.  If you’d like to read more about how Naltrexone came to be used as an off-label drug (for cancers and MS, for example), read the interview with Dr. Bihari, the man who discovered the extra value of this drug in low dose.


2 Responses to "Low-Dose Naltrexone for CLL by Prescription Only"

Thanks for posting this. I have been staring at my LDN prescription bottle, recommended by the oncology naturopath I see, hesitant to start it. I have been on W&W for over 8 years with more rapidly increasing lymphocytes for the past 1.5 years. I also have a positive ANA (but no specific diagnosed AI disease) and family history of autoimmune disease. I am hoping that the LDN may positively affect both my CLL and potential underlying autoimmune issues.

Are you still taking LDN daily? I have been blessed to not be on any pharmaceuticals and just cannot bring myself to start the LDN even though I am hopeful it could delay treatment for me. I read some concern that it can cause lymphocytes to decrease in the blood but increase in the spleen and lymph nodes where they are more problematic to deal with. I have thankful that I have not had to deal with an enlarged spleen and only have a few, slightly enlarged lymph nodes.

Thanks for posting your journey. It brings hope and is helpful!

Thanks for writing, and I’m happy for you that you are trying alternatives. No, I’m no longer taking LDN. I had no adverse effect, but it didn’t help me either. Researched it a lot before trying and as a matter of fact, both my internist and hematologist were against it and would not prescribe it, saying it was too “risky.” At the time, I thought it was a lot less “risky” than conventional treatment. So I found an alternative doctor who did prescribe it, but once again, for me it had no positive effect. The only side effect I can recall is that when dozing off at night I had a consistent image of a circular tightening (hard to describe). When I went off LDN, the image left and there you go.

I’ve had increase in WBC and lymphocytes a few times, and have always managed to control or reverse it (to this point) with diet, supplements, and lifestyle. Things I’ve done: optimize vitamin D3 (took about 10,000IU/day, now taking 5000IU/day) (also, get tested! with the vitamin D3 hydroxy test), next was cooking only low and slow, in other words eating food that is cooked but not dried out or burnt. This means soup, stews, and some salad, which is not at all bad this time of year. The burning of food creates ceramides which raises our WBC. (and the white blood count goes up and down with the lymphocyte count)). the third is lifestyle. Make sure that you re getting sleep and reducing your stress as much as humanly possible. I’ve been taking 3mg of Melatonin to go to sleep most nights. Melatonin has mixed reviews for CLL. It is anti-atoptosis (programmed cell death, which you DO want with CLL), but 3mg is a small dose and for me I think it’s worth it. If you can, go back to my page 15 things to do when diagnosed, and take all the suggestion seriously. One of them might be a winner for you.

About the LDN, why don’t you try it for a set period and then recheck any markers you can and see if you think it’s worth continuing. In my case it was not. But we are all different, unfortunately. So we can learn from each other, but there is no one-size-fits-all. It’s a matter of trial and error. I truly hope it works if that’s your choice. Please let us know what happens. It could help others make choices as well

All best, Denise

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