A coming out of sorts in hopes that it might help others
I don't have pain, but I do have a supposed autoimmune peripheral motor neuropathy that's often first mistaken for ALS (MND in the UK). No known cure, it's so rare they haven't even figured out the mechanism of damage. On diagnosis about 15 years ago I started reading extensively about the immune system and the nervous system. Early on, I concluded "it's all about the mitochondria". So many things are, since that's where most of our energy to live comes from.
I wish you and all other victims of our toxic modern lifestyle the best, as we muddle through.
Thank-you for sharing your difficult experience. So I am not alone. For me, the most difficult thing at the moment is trying to find a cure for tinnitus my now 20 year old son who has been suffering from for the past 5 years. He's been examined by numerous doctors, but no mechanical cause has been found. We have tried out a number of treatments - currently he has been on LDN for the second month (from FLCCC protocol for tinnitus) - He's not c-vaxxed but fully vaxxed as a child. I kind of suspect Meningococcus B vaccine, but I am not sure. His homeopathic doctor said "yes" to my LDN suggestion, though it takes about 3 months to see any results. Nothing as yet. Can anyone point me to some resources/medical center to get in touch with to tackle tinnitus? Thank you so much for any suggestion.
I sent you a message on facebook but I think you should check out the medical medium. The combo of viruses like EBV, herpes, shingles and opportunistic bacteria like strep are lurking in our bodies and eating toxic metals and then excreting their poisons and making us sick. If we can get rid of the metals and starve the bugs we can heal. It is helping me and has helped many others. He has a chapter on me/cfs
Thank you for that beautifully tragic personal account that didn’t shy away from the true crushing costs like relationships etc... You’re a brave honest soul.
Thank you from the bottom of my heart. Currently a particularly bad pain day for me and having insight to that degree that people like yourself, that I so admire are also plagued with chronic pain breaks my heart but gives me hope for all of us and lately I’ve been struggling to have it for myself for some time recently.
Iodine has helped me too. A strict carnivore diet brought my pain down so much I got off all meds for a while but the recently war on meat and inflation has set my health back tremendously as I can’t afford to eat the way that I apparently have to because lack of money.
Toby I was just recently directed to this particular issue of your substack from one of your most recent issues. I feel a somewhat parallel situation to yours as I have been playing detective, researcher, etc... trying endless therapies and protocols to help my son and his long list of ailments (for a very long time). Long story short, I just came across this video in my research which talks about high dose thiamine being a useful therapy for conditions characterized by mitochondrial dysfunction. I immediately remembered this article and on the off chance you have yet to receive this unsolicited advice, here is the video.
My next phase of research is to look at the source of the video, Dr. Antonio Constantini.
Sorry if this info is redundant.
Thanks for everything you do to fight this horror, especially when you are in pain.
I'm not a scientist, but what I do with all of my clients if they mention energy problems or I suspect they are not producing the ATP they should be, is to test them using kinesiology against homeopathic ADP (feedback loop from not producing enough ATP) from a Metabolics (UK) test kit (Pain Kit number 1).
This will show (muscle unlocks) if there is a problem with not producing enough ATP, then I use other vials from the kit to find out where the problem is. Pyruvate to determine if its in Glycolosis, AcetylCoa to find out if its in the Krebs cycle (if so, other vials to find out where - Citrate, Isocitrate etc) and other things if it turns out to be in the mitochondria. If the muscle test changes one of these vials from an unlock to a lock then I know its somewhere in the pathway before that and can test through samples of the nutrients needed in that pathway or the enzymes involved (using another Metabolics kit). I would offer to do this for you but I'm in Australia. There may however be someone in the US who uses these kits.
This way one can pinpoint exactly what the client needs to start producing more ATP. However, in my experience, this is usually a symptom, not a cause. If one can then find that (the cause) using other tests and techniques and balance that (and yes it could be a previous vaccination or a toxin, suppression from a drug (they commonly interfere with nutrient pathways), stress of some kind or even something mental or emotional) then the blockage will disappear of it's own accord, but they usually need the nutrient that you previously found as support for a while. Often, it's NADH or Thiamine Pyrophosphate or Riboflavin or Magnesium.
The other thing that is important is that one can test for the exact form of a nutrient that is right for you. For example, Magnesium comes in many different forms, Citrate, Glycinate, Orotate, Phosphate etc, People have a preferred form, so you may have been prescribed something that you needed but it wasn't in the form you needed it. Even those who use kinesiology may not know how to accurately find what you need. I can explain that if you know someone who can test for you.
The depth of your compassion and understanding is so tangible. I am glad to have read this today. It explains a lot for me and my own experiences. I have further exploring I intend to do. Thank you! 🙏
A class of herbs that help upregulate the Nrf2/ARE pathway (Rosemary, Green Tea, Turmeric, Grape Seed, etc.) Coleus (CoQ10 of the Herbal world) and adaptogenic herbs, namely Rhodiola & Korean Ginseng may be helpful with mitochondrial biogenesis. If it's a stealth Pathogen causing the dysfunction, consider herbs such as, Artemisinin, Sarsaparilla, Myrrh, St. John's Wort, Thuja Berberine, etc. Reach out for any clarification.. email@example.com
We met once. In Colorado. It was your first speaking engagement and we had talked the day before. I wish I knew all of this about you. Of course I probably would have cried and fumbled with words worse than I already do. How we suffer in our peculiar limited self shadow banned ways. Always knowing there is more to us than we are permitted to live. I have moments of brilliance followed by dull gray hours. And I'm not even depressed anymore. I struggle with energy and fall into the Ehlers Danlos Club - It's really syndrome but the abbreviation is EDS and this is already confusing for people. The iodine protocol has helped me tremendously but the copper protocol has given me a new lease on life. I know you're friends on FB with Jason Hommel, the author of The Copper Revolution. I think you also wrote that you were taking copper. I make copper sulfate and slap it on daily unless the detox is too great to handle. My joints no longer pop out of place and I no longer sound like a rickety staircase while walking. Plus it kills fungus like there's no tomorrow along with who knows what else I've encountered along this journey.
I just want you to know that you are loved greatly by so many. Truly, deeply loved. I wish I could come over and make you soup or something comforting and nourishing.
You wrote about ME/CFS. I had never heard of it until I read your health story link in your latest Substack today!
Melatonin used to be talked about a lot, but recently has had bad press... I wonder why? Maybe because it was a suggested treatment for Covid? Anyway, some months ago, I learned that the highest concentration of Melatonin in our body is in our mitochondria. I also read a book recently about sleep, "Why We Sleep" by Mathew Walker, that mentioned how adenosine, which comes from degraded ATP, accumulates during the day and eventually exerts sleep pressure. Melatonin was described as the starting gun to signal the release of the adenosine. Something about these facts tickle my brain a little. I don't know why. Melatonin was something I used to give to my daughter in the mid 2000s to help her sleep, almost like a sleeping pill. It didn't always help a lot, but there were mild improvements over time, some of which seemed unrelated to sleep. Eventually I tapered off with it and went on looking into other treatments.
I wanted to comment today because my daughter Liliana developed autism after vaccine injury, and the first symptom was when she began to cry inconsolably, and quite pitifully, in pain. The pediatrician called it colic. I knew better but could do little to help her apart from crying along with her. Later she would point to her feet and say "hot", which very soon turned into her running around the living room all night, it became obvious that it was her frantic attempt to distract herself from the pain.
I know that people with autism have mitochondrial dysfunction, and sleep disorders; they also have abnormal levels of ATP in their blood and brain. Pain is another symptom of autism. Recently we've thought about using Melatonin again, this time for the purpose of helping Liliana's brain.
I am so sorry that you hurt all of the time. I appreciate your effort in educating others, and the intelligence and the careful honest way you prepare your information. It has never been easy to be honest in a dishonest world.
Have you read the book Minding My Mitochondria by Terry Wahls, MD? It's out of print but you can buy it used or get it on her website I think. She says she cured her MS by eating to feed her mitochondria.
I hope you find relief if not a cure.
Hi, Toby. I had not seen this Substack back when you first wrote it. None of my ME / CFS patients have yet come out of remission to my knowledge. The title of these videos will seem irrelevant, discussing cancer, but the principles are the same, and the treatment is very similar. (I am not alleging an increased cancer risk in ME / CFS, just some parallels that are informative.) I talk about the mechanism of treating the mitochondria till well in my cancer & biochemistry series here: https://natureworksbest.com/cancer-biochemistry/
1000 blessings back yer way brave warrior Toby. I had NO idear how ya came to this work (and amazin' work it is--keep on keeping on!) but hopefully it cuts the pain a bit know'in how much yer appreciated.
And boy golly, you DO have good company on the Mito Mystery Tour (affecting many of us "mightily," it's certainly not a journey for the faint-hearted). Not sure if ya got tested but many of us are MTHFRs (mother u know what-ers) --you likely know all this but for those unfamiliar, it's a gene that means a) messed up mitochondria and b) difficulty absorbin' all those good B-vitamins. Supplements for life (yup, the iodine is good, clearly the B's) with a few bows to the Goddess Io (aka the Cow Lady) cuz meat (of the grassfed type), not bugs, is a MUST fer us MTHFRs. B's and the CLAs and all. Collagen too, bone broth, all that stuff (Bless the BEASTS and the chillin', right?)
Daisy n' daughters here all have that MTHFR gene and one of 'em, my Type 1 kid who also has ASD (cups runneth over here'bouts...) also got endowed with the DOUBLE variant making her vitamin absorption even worse--and this also proves the hubs has it too though he declined to git tested. You may have it as well--and someone (clearly NOT anyone from big pharma) needs to dig up a real and lasting and holistic solution for those of us in the Mito-Mire.
It's always an autoimmune jubilee hereabouts (don't need Connie Francis to sing Whose Itchy Now?, we always got our homemade jewel weed eczema drops at the ready....). Truthfully we prefer to focus our celebratin' on things cheerier and accept that pain it's just part of the battle against what some days seems like "So Much Sufferin' " (as Carol King cleverly wrote in Really Rosie, that life is inane if you're sufferin' and I'm not blufferin'!). So, darn tootin' it's inane that we all have to go through this pain, 'specially given the time human beans have been on this great Earth figuring out what HEALS and HELPS... but of course... Rockefellers and all that. I DO wonder what's been buried that could help us right now, though, don't you? (If Tesla could've given us all free safe energy--I wonder what other fixes got bought up by Mr Global, right?)
Anywhoo, someone here suggested Carnivore diet and I think it's a great suggestion, may help (Armstrong girls, look 'em up)--it's on my oaken bucket list too! We do keto and I (mama bear here) do the intermittent fasting thing--it helps much! Also, not sure if this is so for you, but for some of us Magical Mito mugs here it seems like it's open house for bugs--Lyme, toxoplasmosis, rashes, GDD (from MRIs), Floxxie fun an' melted joints, ya name it. I think they (the bugs) know me (lol) because they certainly find me easy. Oh and 5G which is another type of weaponized pest as my worst symptoms doubled the day it was turned on here in NYC. Another battle but gotta take down the 5G too.
Well, this is gettin' far too long but sending many healing wishes yer way and even greater admiration for your incredible work helping us human beans 'specially in light of your own Mito Mystery Tour Snakes n' Ladders. Somehow we'll prevail, we bee-utiful human beans--just have to keep resonatin' out there in the universe. (Not to fergit that listenin' to music is better'n' liniment fer joint pain!--likely even better for yer brain than the lull of tik toks...) With gratitude!
Could ivermectin help you with any other possible parasites affecting the mitochondria? It’s just a thought, I am not a doctor. But I wish you healing & wellness...& also, blessings for all of us during this awful time in the world! And, I thank you for all you do!! ❤️ from Southern California!
Oh yes, & have you tried oregano oil (along with activated charcoal) for detoxification? My kids & I did oregano oil for 10 days & the activated charcoal for 30 days after we moved to a new home when having lived in toxic mold for years (unbeknownst to us). We’ve all had vaccines too, unfortunately. During the treatment, we did get a little sick, feel bad, & suffer “Herxheimer reactions” close to the 10th day of taking oregano oil, as it does release toxins into the bloodstream, but I believe it definitely helped us. We got much better. Best of luck to you!
Have you done anything with Stella Osorojos Eisenstein? I wonder how resonant attention and/or manual interpretive therapy may support. Thank you Toby for your courage, honesty and fortitude, it is changing the world.
I know you’re going to get lots of advice & you’ll have to wade through it using your gut instinct.
I experienced CFS after spending years healing my son (with natural methods & lots of therapies) who was V injured.
It is virus + toxin, affecting neurological system + so I think you’re on the right path to figuring it out.
Dig into the work of Anthony William, his protocols worked for us, but go slowly. I’m a healing foods chef, so if you need help, reach out.
Your work has made a huge difference!!!