378 Comments
User's avatar
Dr Alex Kennerly Vasquez's avatar

Toby, as you know, I had something similar. If you wanna send me a direct message and your labs, I’ll take a look. https://open.substack.com/pub/healthythinking/p/celebrating-my-20-years-of-deciphering

Expand full comment
Maxstirner's avatar

have you considered psychedelic therapy for pain syndromes? prof david nutt is a good source there

Expand full comment
Beth's avatar

Thank-you for this. I'm sure you've heard of this, but just in case: Dr. Terry Wahls. She cured herself of MS--focuses on the mitochondria. The Wahls Protocol.

Expand full comment
Toby Rogers's avatar

Thank you. I instantly went and purchased the book!

Expand full comment
Beth's avatar

I hope you find something useful there. It was a miraculous journey she went on; hopefully, yours will be as positive. God Bless.

Expand full comment
Sal's avatar

Brilliant article Toby. A good friend identified in 2021 that it’s the mitochondrial function that is the real target on

F the experiment. The rest is side effect.

Expand full comment
Mark Heatherbell's avatar

Hi Toby. You should try my mitochondria medicine. I have found a way to use bioidentical hormones to control and relieve Chronic Fatigue symptoms. It costs a bit, but using hormones like this directly boosts immunity, and the extra immunity can fix anything, from pain, to weakness, to poor gut function, to improved appetite and energy, so it is worth paying for. I am writhing a substack about the treatment I use, and you could be the second person in the world to try it. I have been using it for 20 years with no side effects, and I couldnt survive for long without it. My hormone function has been compromised by many years of untreated Lyme infection, and this treatment seamlessly fills in all the gaps. How do doctors not know that hormones provide immunity like this?

Expand full comment
Craig Campbell's avatar

Did u try anti-parasitics for giardia. Apparently they work on demodex folliculitis, which may or may not be relevant.

Expand full comment
Barbara's avatar

Well, what a journey you're on; very sorry to hear you're still dealing with this challenge; glad you're getting some clarity finally.

Fasting one day a week on herb teas, water, hot lemon / hot ginger drinks will help.

Three day and longer fasts are better; a ten day fast will (apparently) reset your whole system.

In addition to fasting,(#1) having saunas, (sweating), increases mitochondrial function and the production of stem cells. (as does aerobic exercise, but that will come later)

Beware of coffee... there's a reason we're all addicted to it, just as we are to pain killers, wheat, and sugar...... better to ditch the sugar - a major cause of inflammation..I discovered that drinking org vegie juice was a far better way of reducing inflammation while increasing energy in the body. But I understand the coffee habit well.

Try replacing sugar with Xylitol (probably the safest sweetener out there as it's derived from the cellulose of birch bark..better than agave or the others.

I agree that vaccines are a major chronic disease link,as they were likely intended to be. as are mercury and metals in fillings and root canals. Also fungus, yeast (Candida) and parasites are too. Keeping body Ph neutral, getting rid of most sugars, eliminating gluten and yeast products, and all highly processed foods will surely help your energy level. But it takes will.

See Judas Dentistry by Eustace Mullins. Blessings on your journey to wellness. Think good thoughts.

Expand full comment
Jane's avatar

What was the trigger, Toby?

Mine Rhogam x 2

One last flu shot in late 2000

12 injections of toxic gadolinium

And picking up infections, one of which was T gondii I got from a cat I took in off the street. It tested positive way back, but I did not until 19 years later. By then it spread. My brain has felt like it was on fire until I started chelation and treated the protozoan. I still have those inflammation migraines but definitely better.

I was bed bound for 19 of the last 25 years until I found my root causes. Not a 100% but I will take what I got now, and it came with hard work. It sounds like you went through A LOT as well. How did we get chosen for this task.

Oh, and yes, the friends leave. I am fortunate to have my husband who stood by me all this time. He saw what I was and knew something happened that instantly changed our life, our finances and ruined my career. We adjusted. Although, I am grateful for the destruction of my nursing career in its traditional form. It is unrecognizable at this point. Now, I am a warrior for truth and informed consent.

Keep the faith.

Expand full comment
Toby Rogers's avatar

Thank you for your powerful testimony and kind words! 🙌

Expand full comment
Mae Kleinheksel's avatar

Your story resonates with me. After a TDAP my arm became acutely sore. The pain moved into my eyes and I had significant visual loss, as well as brain fog, acoustic sensitivities etc. Dr Tennant in Dallas Texas has a bio modulator that I used to regain my vision. He was after mitochondrial dysfunction in 2011. Research his site as his story will resonate with you as well.

I do believe many have chronic Lyme and the tests are made poorly enough to not diagnose anything they are poisoning us with. I also agree with JFK Jr that vaccines are the vector.

You also cannot build or energize cells without proper nutrition which is near impossible to enjoy these days.

Many blessings to you, I enjoy your writing on my chronic quest for survival.

My energy has returned with glitches if i get lazy in maintenance.

Expand full comment
Jane's avatar

Keep the faith!

Expand full comment
CS's avatar

Same story, different 'disease/ syndrome.' Mine is caused by TDAP and a 'silver' (mercury and lead poisoning) filling removal. Like you, it's been decades. Many things help but nothing completely. Last few months I've been doing 72 hour juice fasts about once a month and I think it's improved my health more than anything prior. Fasting induces autophagy (self eating of damaged cells and gives your body a rest from digestion so it can repair itself). The (veg and some fruit) juice provides abundant vitamins and minerals. I'm hopeful. Maybe it will help you too. Blessings to you.

Expand full comment
MaatTheCat's avatar

hey Toby, have you heard about red light & infrared therapy? I found out about it in Norman Doidge's amazing book "the Brain's Way of Healing Itself". Since you're such a big reader, check out the chapter about light therapy and see if it sounds interesting to you. hope it helps

Expand full comment
Toby Rogers's avatar

I recently started doing red light therapy and I like it a lot.

Expand full comment
KM's avatar

So sorry to hear this Toby.

You really nailed it with these couple of paragraphs: "Regular 40 hour jobs are impossible...Friends are curious for about 6 months and then life intervenes...Family sticks around for about a year...Dating is nearly impossible..."

I have been there. Though I was very lucky that I had a couple of friends who did stick around.

I did substantially (though not completely) recover and I'm still not sure how or why, other than rest and Pilates! (I too spent a lot of time, money and precious energy pursuing all different treatments. I appreciate the 'alternative' practitioners for at least listening to me and believing me, unlike mainstream medicine which predominantly gaslit me. But the alternative practitioner's approaches didn't work either.)

Quite some years later I had another crash, though somewhat different. Significantly more neurological involvement than physical. In fact, I didn't even realise how bad I was until I very recently started slowly coming out of it. I wasn't even seeking 'treatment' for it! - I was working on addressing my food sensitivities and intolerances after reading Fibre Fuelled by Dr Will Bulsiewicz and discovering I could do something them. This was through a range of approaches, and to my (welcome) surprise, a year later, I've gained a myriad other improvements. (I now suspect COVID vax... the health practitioner who has been supporting me led me here...)

Anyway, just to say, I hear you and see you. I hope each day you are able to find something, however small, that nourishes your soul. Brings you some solace.

And thanks for all your work. No doubt challenging to get done in between your "full time job" of living with chronic pain and illness.

All the best

Expand full comment
Toby Rogers's avatar

❤️

Expand full comment
bshepherd's avatar

Toby, sounds like you could have a severe overgrowh of candida albicans & other types in your body. It's at epidemic proportions and MDs usually don't have a clue (and that's no accident) ... .It can cause severe chronic fatigue like you're describing if left unchecked; also various other maladies. Feeding on sugar and caffeine is the worst for this as are most grains , sugars, dairy, alcohol, etc. as yeast feeds and reproduces on sugars. Here are some links to check out, but you may also be interested in reading Lee Know's Book Mitochondria and the Future of Medicine . Mitochondria are the factories where energy is produced as you already know now. And the processes involved in this can be helped with certain supplements like CoEnzme Q 10 , and better Ubiquinone . Lack of glutathione is said to be a major factor in mitochondrial dysfunction.

Here's Dr. Jockers. and more.... I'd recommend him and anyone working in Functional Medicine. (stay away from pubmed and all the standard Allopathic links for now.. stay with individual doctors, naturopaths etc. Also , fasting will heal just about anything ... A three to 10 day fast will help reset your whole system..it triggers the production of new stem cells.

. These guys recommend starting with intermittent..

https://www.ifm.org/news-insights/fasting-mitochondrial-health/

https://drjockers.com/heal-candida-naturally/

Book : Living Candida Free - Ricki Heller

Dr. Joseph Mercola for supplements..file:///Users/user/Desktop/mitochondria-supplements-pdf.pdf

Dr. Peter Kan has a lot of knowledge about gut health , and how it impacts every other system.

https://www.amymyersmd.com/article/anti-candida-foods

All the best

Expand full comment
Ol' Doc Skepsis's avatar

Toby, I'm only reading this post today, due to you linking to it in your most recent.

I happen to be reading this mitochondria article at the moment, and pass it along in the hope you find it useful.

Cheers and keep fighting!

https://www.sens.org/sens-versus-parkinsons/

Expand full comment
SheThinksLiberty's avatar

I'm so sorry to hear you've suffered with this, Toby, for all these years.

Thank you for this information. Fascinating and makes so much sense!

Expand full comment
CatherinelovesAngel's avatar

I have CFS/ME. When I finally got out of bed, I walked to the door. The next day I took a few more steps. A few days later I was able to go downstairs and back up. Each day I added a few more meters to my walk, until, very gradually, I was able to walk up a hill. Then I left the city. Gentle, gradual exercise and removal of chemical/EMF toxins does provide a way out. I still walk up a hill every day... going dancing tonight.

Expand full comment