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APRIL 2020

 


Questions re husband's possible use of LDN
Last Post 27 Jun 2020 01:00 PM by Elaine Moore. 1 Replies.
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CarolUser is Offline New Member New Member Posts:
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24 Jun 2020 11:22 AM
    Hello again Elaine,

    As you know, it was my most recent re-reading of your book on LDN that prompted me to talk to our FMP about possibly prescribing it for my husband who has epilepsy. It seems that LDN's effects on the NMDA receptor work very much like anti-seizure meds.

    You see, after 5 years of having his seizures controlled by Lamictal, my husband started experiencing breakthrough seizures in 2015 and things worsened. Many meds changes ensued and he's now taking Keppra in addition to Lamictal but that alone didn't stop all the seizures.

    We did tons of research and he embarked on many changes including a major diet overall in 2017 (no sugar, grains, dairy nor processed foods, 12 oz of meat/eggs per day along with 3 lbs. of a variety of veggies and a little fruit along with lots of healthy fats (that comprise 65% of the diet's calories). The other changes are quite numerous and are related to addressing seizure triggers and also reducing inflammation.

    I am happy to report that his seizures finally calmed down last year....only to be replaced by an exacerbation of meds side effects. The FMP thinks that all the changes my husband made lowered his meds requirements. Things got so bad this year with side effects that his epileptologist lowered his Keppra dose 3 separate times. We were told that no further dose reductions could be made due to his Keppra and Lamictal blood levels. My husband just started his final option last month: Lamictal XR.

    Not surprisingly, he's had some breakthrough seizures but they've been very mild. We're hoping everything settles down and he's keeping LDN in mind if he finds he needs more help. Since his brain seems so sensitive to changes, we are approaching the topic with an abundance of caution and I once again have more questions for you....

    You mentioned that micro doses can eliminate the side effects of medications and that really intrigued my husband when I shared that with him. Firstly, are you able to expand on just what a micro dose is?
    Is it lower than the standard 3-4.5mg doses that most people seem to take? Any titration recommendations?

    Also, I would appreciate you explaining to me the mechanisms with which LDN can eliminate side effects.
    I've become quite intrigued with all the dots that I've been connecting these days through research and am hungry for enhanced understanding.

    On another note, while it seems drug interaction checkers indicate that Naltrexone doesn't interfere with his seizure meds, our FMP suggested Genomind testing which was enlightening to say the least.

    The Genomind test revealed that he has the A/G alles for OPRM1. The report states that people with the G allele need higher doses of opiods to achieve analgesia (this explains why the Vicodin his old neuro prescribed for headaches never did much for him). The report also states that G alle carriers may respond better to treatment with naltrexone for alcohol use disorders. How might this information translate to my husband's possible use of LDN? It sounds like he's genetically predisposed to benefit from it. And, I'm back to wondering about dosing.

    The Genomind test also showed him being a poor metabolizer of CYP2B6 which I understand is the lesser of the two main enzymes (UGT1A4 being the main one) involved in Lamictal metabolism. The report mentions there may be "altered exposure to medicatons metabolized by CYP2B6".

    He also has the G/A alleles of ABCB1 with the report indicating that the A allele is the cause of increased absorption/penetration of certain meds - my research shows Lamictal is one of them.

    How might the combination of these two alleles affect his Lamictal metabolism?

    I'm also going to throw in the fact that he tested with high activity COMT (Val/Val) and appreciate any input you can offer.

    Thanks again for all your help as we navigate the LDN waters.

    All the best,
    Carol
    Elaine MooreUser is Offline Veteran Member Veteran Member Posts:3387
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    27 Jun 2020 01:00 PM
    Hi Carol,
    I'm away from home dogsitting my grandpuppy Bella the Bulldog so I don't have books here with me. I don't know enough about genetics to answer all your questions but the genome testing is fascinating. I'm pretty sure that val/val causes a faster breakdown of dopamine. I found an article on PubMed from the Croatian Medical Journal by Lukasz M. Konopka that explains it well. Genetic vulnerability in patients with psychiatric presentations: a neuroscience perspective. I can't bring up the url but I found it on ncbi.nlm.nih.gov
    I would think LDN would help by increasing dopamine.
    With all the information you have from genetic testing I'd think your specialist could find the right combination of meds. A ketogenic diet is reported to help as well but I'm not sure of how specifically this works.
    Micro doses are very small doses of standard drugs. LSD in particular is one of the drugs being studied for benefits using microdoses. I did a quick search and was surprised to see all the studies using curcumin for seizures. A process of micronization is being used to produce specific forms of curcumin therapy.
    Your husband is lucky to have you investigating this. Best, Elaine
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