@CrumblingCookie said in Glucose loading cures everything?:
My diet is poor. Definitely too little protein. Are you having any specific thoughts?
I’ll share my experience, because it seems that eating well and enough is very important for me.
I’ve just crossed the 6 month mark, and I’m not fully healed at all, but I’ve never followed the protocol. I’ve been using glucose as a Peat-ish tool, and I think it’s a game changer for my body.
For context:
I’ve had undiagnosed ME/CFS since 2006. The first time it was mentioned was in 2020, after I got a lot worse from covid, and I got diagnosed in 2022.
I’ve been between 95% and 99,9% housebound since March 2020. I’ve been very isolated by my symptoms, and have rarely had days where I don’t crash. I found RP in April 2021 and saw benefits fast: It helped my sleep, and eventually a lot of other things. Summer of 2022 I was a little bit less fatigued (95% housebound and the most social I’ve been), but later that fall I contracted covid again, and I never recovered back to the baseline I had before that.
In May and June last year I was experiencing the worst PEM (activity induced increase in symptoms) I’ve ever had. I’ve planned my food around activity, but no matter how much I ate adrenaline was non stop for days, which happened a few times with fairly normal activity (although it was way outside my normal range).
So that’s where I was before glucose.
Here are the things that got worse after started glucose:
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Horrendous tinnitus: I’ve probably had tinnitus before, but this is next level. I think it was worsened by running out of vitamin K2, and it’s now mostly better, but still have some moments and stretches where it’s wild. I think it has to do with intracellular calcium, and that makes sense for ME/CFS as well. Fingers crossed it will recalibrate.
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My sleep has been worse since late September: My sleep has been mostly very good since 2021. It was amazing in July and August, because I was finally tired at night, and in September it was the best I can remember.
I’m not sure what caused it to change, but here are some thoughts: 1) I was woken up twice in less than two weeks by the fire department and police. I live in a very quiet neighbourhood and have never experienced something like that before. Turned out to be nothing, but might have played a part in my hearing becoming more sensitive. 2) the tinnitus issue started around this time. 3) I might have eaten less protein than I need.
The sleep was really awful for about a month, then not great, then some good and some bad nights. Now I have more really good nights, and I have started waking up a little rested again in the last few weeks, which I consider a good sign. Crossing my fingers it’s moving in the right direction. I’m not sure if any of my emotional or cognitive interventions of 1) were helpful, but as I’ve upped my protein and started taking K2 again I’ve seen improvements.
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Very dry skin on my hands: I’ve had issues with it sometimes, but it’s usually not one of my most prominent symptoms (as long as I don’t bake every day - had to quit my original education as a baker and confectionary). It got better in December, but still has not fully healed.
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Not sure this needs a point, but before I started waking up a little rested at the start of the year I was very exhausted for a few weeks. Not very surprising really, with my starting point, and five months of more of less “acute reinfections" and immune responses. Cognitively I was very exhausted, so I haven’t been able to update here.
Immune reactions and benefits
I’ve also continued to have immun reactions, but I don’t think that’s negative - even though it’s been exhausting. I've had immune responses that have indicated 2-4 rounds of shingles, a lung infection, bronchitis, overlapping symptoms of infections in the lungs/bronchial tubes/throat and sinus several times, what I assume is an immune response to infection in the brain (which might also be an explanation for the tinnitus and sensitive hearing). I’ve also felt a mouth sore coming, but the body has won all of these battles, and like the shingles the mouth sore didn’t break out fully, and healed abnormally fast.
I still have some waves of this, but mostly lasts an hour or so, and happens in the evening or at night. I might have another round of chest infection starting now as well.
And despite all these infections/immun reactions and the terrible sleep, I have more energy than I did before the summer. For a few weeks, I think it was in November/December, I was able to go for more walks and increase how many steps gradually. Not far, but a lot longer than I’ve been able to for a long time. I’m usually better in the warmer months and it’s winter here now, so I am curious how my body will react to spring this year.
It seems very clear that my adaptive immune system has been activated, and in my glucose + Itaconate shunt hypothesis that makes perfect sense. My hope is that the first month was a sort of taste test of how I will start to feel when it's not activated all the time. I think that after a month of consistent use pathogens also got more energy and started reactivating, and so the immune system had to do some maintenance.
Wounds I’ve had, that have not healed for years, have started healing, and my hair is growing out a lot thicker. Nails are stronger, and I think I have less grey hair as well (daily oyster powder seems to have affected that before glucose too though).
I crash a lot less, and have more time for all the small parts of my day. I’ve been able to meditate more, knit more, and rarely feel that a day just rushes past me - which was most days before glucose. So I’m hopeful!
The glucose and the food
I’ve not added anything else except for glucose, because simplicity is very important for many people with ME/CFS, so I’ve wanted to see how far it can get me. (People with ME/CFS appear to have trouble breaking down carbs.)
I've been taking a tbsp every hour approximately, so 12-14 tbsp a day. (Also did a bit more for a few weeks, because I wanted to see what happened, especially with the sideeffects above, but it didn’t help any of the issues. I think consistency is more important than quantity.)
I’ve been checking my blood glucose, and it’s not increased. I checked twice a day (morning and two hours after a meal, one after glucose) until some time in the fall, and then my GP and I decided I could test twice once a week. The HbA1c (long term blood glucose) is also within range; nothings changed.
At 12-14 tbsp a day I have around 140 grams of glucose/dextrose a day. I eat 2500-2700 calories a day, 60%+ carbs, and I've been trying different ratios, but now I’m at around 20% protein and 16-18% fat.
My sense is it's been very important to eat enough food overall, and enough nutrient dense foods, when taking large quantities of glucose. I think i’ve said this before, but simple carbs with very little nutrients are efficient fuel, and that means the system will work fast, and that means one can become deficient faster, if one doesn’t have enought nutrient dense food.
I've been aware of that since I started in July, but slacked a bit and landed around 100 grams for a while. I've upped it to 120+ recently, and it seems to have helped my sleep.
I’ve been tracking with Cronometer every day. I’ve not used it consistently before, but I tend to not eat enough if I don’t track. I’ve lost weight too btw, while being housebound and eating 2500+ calories. I’m not sure if it’s because something is off in my body (I do have a very severe illness), or if its just a sign of my metabolic health getting better.
I’ll try to share some more musings soon about the more metabolic side of all this. Now for some more glucose!