I agree with @Hope_eternal ..... this sounds like a neuro isssue and a severely dysregulated sympathetic an parasympathetic nervous system.... it's absolute hell and while your partner in this state of discombobulation, they're inot in control of what they say, what theey do, what theey think, or even if they think ....they only know the wrenchng agony of the anxiety, panic, and derealization .
As I; know you 're aware (this is for subsequent readers who might not), LDN is an opioid antagonist, which it sounds lije is working on your partners internal endogneous opioid receptrs, etc ....
I speak from experience with similar issues, tho not LDN ....I'm going thru similar upheavals due to a deeply vicious COVID that my loving hub, DB, brought home unknowingly. I thought I was going to tear my skin off ..... was able to do just enough research (bad brain fog, fatigue, massively reduced brain function and memory, to determine that taurine and/ir GABA would be worth trying, and they both have been extremely helpfful,
Taurine is an amino acid and a precursor to GABA, which is what your partner needs right now (GABA is the primary calming neurrotransmitter in your brain, balancing glutamate, the prinary excitatory neuro. GABA is gamma-amino-butyric-acid, similar in activity, tho way weaker, to benzos, but without the vdery considerable and extremely real dangers of habituation, addictian, tolerance withdrrawl and a fasst track back into he darkest bowels of hell....
If you have benzzos, use the with extreme caution. Some people can become habituated in less than a week, and they;re the ones that hae the worst time getting off of them after that ..... diazepam (Vaium) would be the beenzo of choice due to its extremely long half life, betweem 50 and 74 hours, which allows for wider spacing intervals between doses, andd slowr potential habituation/addiction. I often hear Klonipin referred to as a long acting benzo, but it totally, definite;y IS NOT.
The received wisdom is that PharmaGABA (the only kind you would wantt to consider, more pottent and more effective than anything labeled as just lain GABA) is useless because it can;t cross the blood/brain barrier, and therefore would have no effect. This long held belief is being reconsidered right now, slwoly and methodically. What everyone, iincluding me til recently, overlookedd is that there are GABA receptors all over your body .... in your lungs, liver, kidneys, and espcially your gut, so there are many receptors it can work on. It also helps with sleep, tho not as dramatically as benzos. Klonopin is not only highly addictive, it's screaming hell to get off of, and if a problem develops with me, your Dr will be no help at all, denying even the possibility of tthe effects you're dealig with.
THORNE LABS PharmaGABA iss excellent, and PureEnncapsulations Taurine is also extremely good, at least in my experience.
THIS !!!!! This is a brilliant suggestion @Wishful, ad I wish I;d thought of it. But then, right now I wish I could thnk at all ....
People are just so ..... fun.
Alsso, don;t buy any aluminum hats. They never fit and they make you look so 1980's ....
Beenn there, done that .... last month, I was accusing DB of deliberately trying to kill me (he's the one who broughtt home the COVID tht;s pitched me into the deepest, dankest bowels of hell for the last 8 months, and isnt done with me yet).
Then I begged him to bring me a gun. Then I wailed on and on about how I knew that I was dying, that there was no coming back fro this, that my life was over, that I'd never recover any of who or wht I was before the flucking COVID, and blah blah blah yadda yadda blah ....
I don;t fully agree with her, and she;s doing what all medical professionals do ..... the balme is always on the patient. In this case,, your partners opioid receptors. They;ll never admit that ANY drug they prescribed, recommended, dispensed in the form of free samples or hope tto get future benefits from the parent company of (wow .... convoluted syntax and sentence.... apologies) would have any but the most rainbows-and-unicorns effects, and NEVER any but the most modest side effects. If any.
When your brain suddenly gets slammed with something designed to jam up its opioid rreceptors, disruption should be expected. Especially by a professional. And the degree and duration of that disruption will vary dramatically from person to person. Your partner sounds like they had a highly sensitive reactive system. This is often the case with highly intelligent and/or hghly creative people, tho like all generalizations, not always the case.
I agree that D3 etc should be on you list down the road, but not right now. And I marvel that medical professionals who generally spend any waking hour they're not on the gold course or turning a buck in offices, exam roosms, and hospitals demeaning and dissing supps, vits, herbs, etc, would suddenly be shifting the spotlight to them at this particualr time .....
But in fairness, your pharmacist sounds like they;re engaged, concerned, and genuinely trried to help without violating the uspoken code of ALL medical professionals: that drugs weren;t the problem or issue, that those concernns are ALWAYS the patient;s fault or responsibility, that no colleague of theirs ever did anything wrong or careless and especially, that NO SIDE EFFECT YO;RE HAVING IS THE RESULT OF THE DRUG YOU WERRE PRESCRIBED. EVER.. NDER ANY CIRCUMSTANCES.....
I agree with youu both. My condition and hellish circumstances are definitely the result of the COVID virus, and as I was reading your OP, that thought came to me alnost immediately ..... worth investigating ....
Are you seriois ?????? LDN is second only to mestonin in these threads in terms of active, on-going interest and concern. Yourre going a real service by posting, and by keeping us in the loop as things change orr develop ....
What is your partner being treated with right now? The 6 hour intervals suggest a shorter acting benzo, or possibly a system so overwhemled by the LDN that even longer-acting meds are limited in their normal action
Again, totally agree .... especially after the reactions to LDN. There have to be better options .....
And speaking of research. DO research the ttaurine and PharmaGABA ..... don;t takee my word for it .... check out any potential contraindications or drug/supp interacctions that might be troublesome ....
Am hoping that the worst is over for you and your partnerr, and that the road is defiitely towards the light and home. Just know youre going to be all right, ths will pass, but keep a vigilant eye on things til it doees and even a litte after that.
And chck out @hapl808 's suggestionn in their post above to seek out forums for LDN specifically. There's a wealth of information in all these sources, and theybbmay have unput that you couldn;t get here ....
Apolgies for the numerous, endless typos .... dn;t have the stamina orr energy to go bak and correct them ... think of reading this as a sort of ..... adveture.
Thank you so much for this amazingly in depth and detailed reply!! I know it must have been tiring so I appreciate the effort a lot <3
I can't seem to figure out how to do quoting on here so will reply to your points in order (I'm in my twenties with the tech ability of a 100 year old)
- I agree there's something discombobulating in their nervous system, immune system, all and any systems probably. Can't tell if the LDN caused it or exacerbated something that was already there. They're too severe for a doctor to examine them or take blood so it is a guessing game without being able to get a good look at what's going on inside
- thank you for the recommendations of taurine and GABA! I had already been looking into GABA, but if it could help mend whatever the LDN has done to their opiate receptors and dopamine levels, that'll be a good step in healing some damage. Thank you for explaining exactly how it works as well, I'm not a very scientifically minded person so trying to explain to my partner theories on what's wrong or what new meds can do, I come off like I have no clue what I'm talking about
- trying to be careful with the diazepam still. They've been trying to only use max one a week the past few months, but this week has been stressful enough to need more. They're only 2mg so one doctor I spoke to said up to 2 a day could be ok, but still being cautious and saving them for absolute panic mode
- I've posted on the LDN Reddit which had some suggestions, will try the Facebook groups too
- I am actually relieved to hear that you flipped out on DB, as mean as that may sound! Everyone on Reddit was adamant they would never say a single bad thing to their carer, and would always be thankful and kind, which had me thinking something was really wrong with my partner or even our relationship! They are still having bouts of anger, and some of the things they've said will stay with me. I'm trying not to dismiss them, as I know there is real hurt and fear behind what they say, but all I can do is my best. If that's not good enough for them, all I can do is to keep trying. I hope we can talk once their head is clearer (and they've had more sleep).
- Yeah the pharmacist has said I can call back any time too, plus she's given plenty of advice outside of LDN matters, like where to get home blood tests, specialists, papers and research she's heard of. Wish she could be my partner's main doctors tbh! But unfortunately, it also sounds like she doesn't really know what's wrong still. Only that this is a common reaction, but it's uncommon to last this long
- I did not know that about Montelukast so thank you for the warning! Of course the doctor told me it's "very safe, we give it to children!"...
- The current update is:
Yesterday they took a zopiclone again, as symptoms started flaring up again as they were trying to sleep, so the choice was force sleep or wait unknown hours until it passed again. They slept for four hours before the symptoms woke them up again. After another 12 hours (during which I took some naps and called 111 again, waiting for a call back still), the feeling started easing, they took some promethazine and fell asleep.
The Montelukast, and non-drowsy antihistamines did nothing, and ibuprofen made them feel worse, so despite this seeming like inflammation, no inflammation treatments worked.
While they were awake (between a lot of emotions, and even a threat from them to end our relationship if I didn't admit it was all my fault), we spitballed 3 new theories.
1. They are allergic to LDN or the filler, and what we thought were worsening side effects was actually a prolonged allergic reaction. The reason they're still bad despite now stopping the meds, and the reason no allergy meds are helping, is because they're now just recovering from the damage done. (I'm least sold on this theory, I'm not sure but I don't think this is how allergic reactions work. It would support my MCAS theory, but then surely the antihistamines or montelukast would work)
2. Hyperthyroidism fits all the symptoms, and LDN could have aggravated their thyroid into overdrive if this was already underlying. The downside is treatment would be beta blockers which is bad for their asthma (however I have read that cardioselective beta blockers are ok). I also don't think the GP will prescribe them without a thyroid function blood test. We do have an at home finger prick test kit, but last time we tried they were too tired/stressed after 5-10mins, which wasn't enough time to fill the tube. I got a replacement so hope we can try again.
3. Vitamin B deficiency- the pharmacist also thought this, especially as they're experiencing muscle tremors/spasms, and all the symptoms fit. No idea why the LDN would affect this but maybe it's a bad timing coincidence. I gave them a high strength B12 (they normally take one normal one), and their symptoms did ease up not long after....could be a coincidence, but we can try again tomorrow and see. Have ordered B-complex vitamins. Sadly the only at home test kits I could find were the same as the thyroid one, no rapid ones that only need a drop of blood, but if we can treat it diagnosis may not be necessary.
Anyway, that's a long reply sorry so I'll leave things there! Appreciate everyone who has tried to help me and my partner navigate this weird horrible reaction to low dose naltrexone (if it's even to do with that).
I hope our relationship hasn't been too fractured by the things we've both said to eachother. They're obviously very hurt that they've put their trust in me, and I was careless and rushed their dose increase and caused this. I'm trying to accept responsibility and hear their hurt, but also trying to stand my ground when it turns to insults. I'll be a scapegoat if they need something to blame, but I won't lie and say I accept full responsibility for all of their suffering, because I unfortunately can't prevent everything that could hurt them, even though I wish I could. I know I'm doing my best for them, AND I'm making mistakes. I know they want better care, and I'm really trying to give it to them, but this is the best I've got.
