The good, the bad and the ugly
Eleven reports from the field on use of low-dose sublingual ketamine
Pierre and I are coming up on three months of intensive learning about low-dose sublingual ketamine (LDSLK) with our colleagues Dr Rachel Wilkinson and Dr Mitch Leister. It has been an exciting and hopeful journey so far, as most of my patients in our practice at the Leading Edge Clinic have been tolerating the LDSLK well, and many have seen early benefits. There have been a few surprises already, like the patient whose tachycardia episodes resolved, and helped her avoid heart surgery! I was also surprised to learn that a patient could tolerate the LDSLK so well with daytime dosing.
From my chart note today:
Now taking twenty drops or 50mg of LDSLK after progressing/titrating up slowly. “I cannot take it in the evening, because I’m flying.” She switched to morning and it is going fine. "I have lot of energy and I believe it is ketamine.” Saw Cardiologist re: tachycardia, which was getting worse in the Fall, having twenty to thirty episodes a day. Now having 2-3 episodes a day, so notes 80% improvement. She explained this to the heart doctor in Philadelphia, that her decreased stress level from the LDSLK is what is helping her heart rate. He was just out of residency and not familiar with LDSLK. In fact, he cautioned her that it could make her tachycardia worse (or that is what his computer told him. “Well, I told him, and by the time I was done, I think he was a little more curious. I don’t want surgery! But, my rapid heart rate was becoming so severe, that I would get it just walking on the steps, and I had very hard stress level.” Missed a dose two days ago, and still felt fine. “I feel good."
The case below is super interesting, and subtle. What I tease out here is that his POTS symptoms and muscle fatigue do not worsen when he indulges in a small amount of carbs. I think that the carbs have glutamate content, and the balance in his system has shifted towards a lower overall glutamate level, so that he has more of a buffer.
One month in on SLDK: he hasn’t noticed anything adverse with Ketamine. “It knocks me out, giving me sort of a fuzzy head, kind of like I’ve been drinking.” Before the Ketamine he would dream a lot. He doesn’t remember as many dreams as he did prior. In the past, in order to remember his dreams, he would drink ~4oz of wine four nights in a row and it would open up his dreams. Years ago he would wake up in the night, and journal 4-5 pages. He doesn’t notice any difference in his temperament, organizing. He is in a work-as-he-wants-to situation. One thing he notices is that since he started taking this, having cut out carbs, he doesn’t see his blood pressure take a hard hit like it did before. It lines up time-wise. He has some fuzzy-headedness for about ten-fifteen minutes before bed. Muscle fatigue hasn’t been knocking him down as before.
I have been surprised at how naturally LDSLK lends itself to adjunctive cancer care. Two hundred and thirty six patients have been seen by the Leading Edge Clinic for adjunctive cancer care since we joined a five year prospective study using repurposed supplements and prescription medications in conjunction with a ketogenic diet. Who does not experience fear and anxiety when faced with a cancer diagnosis? Fear, anxiety, and their consequences can be devastating for a cancer patient, because stimulation of the fight-or-flight response stimulates the production of epinephrine (adrenaline in lay terms). This can promote cancer progression through its impact upon the tumor microenvironment. Propranolol, an old-fashioned, non-selective beta blocker, has been found to prevent metastases in cancer, by inhibiting epinephrine production. Higher doses of ketamine can stimulate the sympathetic nervous system, but on balance, low-dose ketamine has a much milder effect, and by reducing anxiety, indirectly inhibits epinephrine. The above example of the patient whose tachycardia improved dramatically in one month demonstrates this.
LDSLK has very few serious drug interactions, can be introduced slowly and gently, and in the short period I have been using it, has already demonstrated itself to dramatically not only reduce anxiety, but also improve the quality and restorative nature of sleep, and to shift a patient’s perspective towards hope and survival. Wow!
Six doses into LDSLK. “I love it. My cognition has never been sharper, which I can’t believe I’m saying.” Met with a close childhood friend who is an esteemed pediatric neurologist, who has noticed some dulling of his cognition over the last few years, and encouraged the friend to take it. A lot of remote memories which he feels were tucked to bed are back. He remembers the names of people from the distant past. His friend was telling him about his family during a previous visit and he couldn’t remember the names, knowing them his whole life. “The kid in me is back with a confidence that left me when I started to go through this (vaccine injury). Maybe my mood is better. I’ve always been a little too happy, but even that got tamped down, and now is back.” He is doing so many things, that it’s hard to tag it onto one intervention, but LDSLK is what he changed in the last time period. Taking LDSLK at bedtime was disruptive of sleep one time when he took it close to bedtime, and caused him to sigh a lot. Last night used it at 7pm, and was able to socialize at 8:30pm. He wants to titrate. Guided to hold at 25mg for now.
Had dry and scaly patches all over her body, and was in physical pain all over her body from not eating. Would get sick if she ate or didn’t eat. Doesn’t need Zofran any more. Started the ketamine, and has been able to eat, putting on ten pounds. “I literally wanted to die. And, I’m still having a hard time.” Doing 100mg of sublingual Ketamine nightly. Discussion of switching to troches, as currently needs to use 2ml of the 50mg/ml dose. Was getting 130mg IV Ketamine over one hour twice weekly prior to starting sublingual use.
Slept much better last night. Migraine still hovering at a 5. Mildly agitated that it seems to be holding there, but it's still better than an 8-10 of 10. I made it through yesterday without a single blackout, was mopping the floor earlier and started to feel myself go tunnely stopped and sat down so didn't actually black out...another win.
Started MSM a couple of days ago. Took third dose of LDSLK 12.5mg last night. A substantial amount of his fiberglass skin issues, especially in his face, has diminished. He was feeling better after the first dose, wasn’t sure exactly what from, and tried to do a small workout. Trying to do a workout for the last three weeks with low sets. He seemed to be okay at first. Any time he exerts himself, mostly in terms of resistance training, the muscles in his legs go haywire, with the blood pumping, twitching, and burning pain. This allows him to feel better and stronger with more energy. Resistance training zaps his energy. “My taste buds are shot.” He is eating the same thing every day, but even those things, he can’t taste much. Nighttime is the lowest point. His taste has improved a little bit, not much. “I’ve gotten better at not pushing if I don’t feel good. If I work out, it’s because I feel better.”
He never dreams. He is definitely dreaming more right now, and he remembers them. He can remember them days later also.
Since our last visit, there is no doubt that his tremors have improved. “Huge improvement, from visible shaking while holding something.” This has been stressful, because he wants to be a dentist. When underlining things on an iPad, you can’t see squiggles anymore.
Right now he feels confident to go through dental school and be confident. He isn’t as sure about his happiness. He isn’t happy with himself physically yet. He is more active, and can play pickleball with hardly any repercussions. His job at fast food restaurant has him on his feet, is very physical, and he is also very active in his volunteer work.
Six weeks in to LDSLK: “It just gets better every day.” Two months ago did low-dose Fluvoxamine. Then started LDSLK, feels more calm, more mental energy. One of this favorite things to do to construct spreadsheets which handle different scenarios, and hasn’t done that in twelve months. He is starting to do that again. His focus is better. He’ll take the dose and then do his 30 minute balance session with SSP. He is meditating more, because he has the mental clarity. Watching some of the ketamine videos on YouTube, he has encountered discussion of learned helplessness. He cleared 800-900 emails out of his inbox yesterday. “I feel like these past eight weeks, I have had one or two days that were off, but most days, I can dig in, work, read, and have that mental energy again.” He has been there 8-10 times over the last years where his energy gets up and then he gets knocked back down again, and this is the longest stretch he has had in two years.
Both Pierre and I try do our best to be transparent and honest in our relationships with patients, as well as in our public lives. As I have promised in my Substack about our adjunctive cancer care, I don’t want to report only the wins, but believe that patients and physicians alike need to have a more balanced and granular view of the spectrum of responses to any treatment. Frankly, when someone only reports successes, it makes me dubious, because that just hasn’t been my experience as a clinician over the last thirty years. In what I am writing about LDSLK, I don’t want to do anything different, and so here I am sharing about three patients who haven’t been success stories…yet.
Given the delicacy of our PASC and vax injured patients, I have started to begin treatment with only one drop or 2.5mg sublingually for most, and advance by one drop every night as tolerated. The patient can hold or back up if she/he encounters any side effects such as dizziness, headache or pressure, disassociation, or agitation. My observation is that after patients have been using LDSLK for several weeks, if they are going to have a side effect recur, it is slight dizziness.
With one patient who is on an MAO inhibitor (I know you are reading this), and was very concerned about increased heart rate and blood pressure, I reduced the dose 100x, yes 100x (!) to start with 1 drop of 5mg/ml solution. He took one drop, which is 0.25mg (!) and reported feeling very fatigued afterwards, deciding to stop then and there. Some patients have such high glutamate levels, and are so activated, that even the slightest push from LDSLK can be too much for their system. Almost all of the patient experiences have been positive, but below is the message from the one very negative experience which a patient had when he started with a 25mg dose. This prompted illuminating discussion with our mentors Dr Wilkinson and Dr Leister, and a refinement of approach. In this patient’s case, he immediately stopped LDSLK, and we focused on supporting his body to produce glutathione and lower glutamate with Curcumin, MSM, NAC, and sipping green Rooibos tea daily.
So I can't do ketamine ever again. Total nightmare. I haven't thought about suicide, getting drunk, etc. since I was healed in 2020. But since taking ketamine, it's mostly what I think of - taking my life or getting hammered on alcohol - just to stop the feelings brought on by ketamine. My heart is still racing like mad. I feel like there's a hole in my chest. I've been filled with a rage and fury since I took it. It reminds me of adderall plus Wellbutrin. It makes me feel breathless and I can't sleep. (Check warnings on low dose ketamine spiking heart rates of some people like me)To be honest, I was super excited about ketamine. I thought, "finally!!! Some relief!!!”Now, I feel like breaking stuff, punching walls, and checking into a mental hospital.I wish it hadn't gone this way. My hopes were high. Now I just want these impacts to fade quickly.Anyway, just keeping you in the loop. Please be praying. At least ketamine doesn't have anything to do killing spike…
Thanks and be blessed
Wanted to give you an update that I received the Ketamine prescription and took it last night for the first time. I experienced the following side effects: Enhanced Covid vaccine issues: body vibrations, increased heart rate, heart palpitations, poor night sleep with strange dreams, woke up a few times, but it has given me a significant headache. Ironically it feels similar to the headache that I had following the day after I was vaccinated and lasted at that time for well over a month. Not sure if there is a correlation there or not. Headache is continuing to persist today although not as bad as during the night. I believe the next dosage is to be taken Sunday evening. Please let me know if you are good with this and I will continue on.
My impression was that the patient had a high level of glutamate in the background, resulting in heavy burden of symptoms following first dose of ketamine. I called the patient and guided him to drop the dose to 12.5mg. Following the reduced dose, he had much more subdued symptoms, but still had a headache. I called him again and wrote with the following instructions.
-Lower dose of ketamine to 1/16th of a troche (1/4 of the 1/4) for 6.25mg. If you have any adverse reactions with this, we will order a lower dose troche and drop down to 1.25mg or less.
-You can use 500mg of Curucumin, 500mg of MSM, and drink 2-4 cups of organic green Rooibos tea daily to lower glutamate levels.
-Avoid high glutamate foods: berries, bananas, broccoli, garbanzo beans, almonds, and chicken skin are examples.
First patient follow up, one month in with LDSLK. The silver lining: mood has improved, not as depressed. “The last few months I was just down. I feel like cognitively I’m spelling better and not forgetting as much, less trouble word finding or figuring things out. It’s getting warmer, but I feel like my POTS symptoms aren’t as bad.” Was having blurred vision in the last 5-6 weeks which seems to have resolved. In the last few months she had terrible temperature dysregulation and that has improved.
Second patient, first follow up, six weeks in on LDSLK: reports that before Sunday/Saturday, he was getting better and better with fatigue, exertion, all the different types of pain, burning, stabbing, fiberglass. Was doing more and more, working out more and more. Taste hasn’t improved yet. He has been a lot happier, because he is in less pain. “The miracle that I think is happening right now is that in the last three years I would feel exhausted with exertion, and right now I am getting better pain-wise, but the dramatic change from doing twenty pull-ups to feeling exhausted two hours later, to now exertion without slowing up.” "A week ago, I studied all day, did my biggest workout ever, and then enjoyed the rest of my day.”
Thank you for reading. I hope that even if the cases in this Substack don’t feel relevant to you, that there may be someone in your life who would benefit from the insights shared. Onward and upward!
P.S. If you appreciate the artwork featured in my Substack, you can go to www.kerriegordonglass.com to see more.
Very interesting information. The dance you do with your patients is really amazing to hear about from the sidelines, Scott. It is really impressive and more pointedly, moving, to read about the lengths you all at Leading Edge Clinic go to help your patients. Sounds like the results with LDSLK vary a lot from patient to patient. I had high hopes it might really change the course for my loved one so I hope you will keep us posted on this one.
I just started oral DMSA and I hesitate to put it out there, but I think it is helping my joint pain. 🤞
I love this glasswork! The artist is your wife, Kerrie! The colors are wonderful and the artistry is charming and executed beautifully. Thanks for sharing it with us.
Which tachycardia in #1? This post is a powerful statement of reporting ALL the data and not just the wins. I appreciate the time and effort you've laid out here. From my perspective, you've done a respectable job, even though they can't all be wins, know that you are helping other practitioners help their patients.