In So Much Pain And Scared, Getting Worse Rapidly

[sunraiser]

I really really don't think high dose ANYTHING is a good idea at the moment.

Especially fat solubles or stimulants. I'm not sure people realise how detrimental supplements can be when your body is in a fragile state - I would say supplements have caused the most unbearable trauma in my life - directly at least. Overdoing high rep range weakened me initially, however.

I think there are very very niche circumstances in which mega dosing can bring temporary relief, but in 99.9percent of cases your body is restricting intake FOR A REASON.

If a mega dose brings temporary relief it's guaranteed to be making something worse that your body deemed important enough to limit your uptake of said vitamin and mineral for.

I understand how bad you're feeling and that desperate need for relief. Peace can be restored more quickly than you realise but it's NOT immediate - there isn't a magic supplemental bullet that's going to provide long term relief.

Your diet sounds really limited. If you crave yogurt then EAT IT! Lactic acid via food is very much limited by craving. That's why you can't just eat infinite yogurt. You'll get a stop button once your body has had enough. Perhaps the iodine or something else in the yogurt will slowly bring some equilibrium so you can eat a more varied diet and restore some nutrients.

 

[energyandstruct]

Lots of thoughts and ideas here. I have lactic acid buildup due to advanced prostate cancer. I do apple cider vinegar and potassium bicarbonate ( can use baking soda) to make an acetate which will combine with CoA and form acetyl- CoA and feed the Krebs cycle and start the oxygenation process and form carbon dioxide which will reduce lactic acid made from Pyruvate (fermentation process). 2-3 grams of niacinamide will inhibit FAS and reduce lactic acid further. Aspirin will inhibit COX1 and COX2 and prevent prostaglandins which will prevent inflammation...do not eat fermented foods

Whoa that is an interesting approach. I just may try this. Was trying to think about redox reactions and pyruvate oxidation, stuff I have been looking at for awhile, as I was going through this pain but when I really get the worst of it it's very hard to think

 

[energyandstruct]

I've decided to continue with thyroid treatment, just because my doctor wants me to. I'm hoping that I can still do these other interventions on top of the thyroid.

I'm not super -confident thyroid will help. THere are lots of anecdotes on cfs forums of people having to push the dose way way higher than peat recommends, before seeing results. It seems like it could be some sort of thyroid hormone resistance in that case. (as an aside, when I have more energy, I'd liek to make a thread about that, would be curious for @haidut 's take on thyroid resistance and people with cfs taking high doses of thyroid hormone before feeling any help from it (some report that lithium alleviates this problem to some extent)

(some good examples in this thread: Is CFS/Fibro just Thyroid Resistance?
but also in this doc's blog of her personal experience:
T1AM HYPOTHESIS OF ME/CFS
THYROID HORMONE: MY FRIEND, MY ENEMY)


Because i'm not sure thyroid will help and I don't want to simply push the dose high, I'm going to try methylene blue, thiamine, niacinamde, tudca, and all these other things, perhaps on top of it.

 

[energyandstruct]

I would try the MB first and do some tests, including lactate, CO2, CBC, albumin, etc to see if lactic acid is indeed the issue. No need to add more supplements before knowing what the issue really is.

are lactate tests helpful? I didn't even know one could get this tested. what should I ask the dr for

 

[energyandstruct]

Depending on whether or how much POTS you have (since so often cormorbid) you could temporarily benefit from beta-blockers or Gabapentinoids like Lyrica or Phenibut.

beta blockers made me feel AWFUL. naltrexone probably made my bp high and so doc got scared and gavve me atenolol. Stopped the naltrexone and beta blocker, bp fine. gabapentin I was on for sleep after I got sick but before I got really really sick... helped some, idk, maybe should try again.

 

[mujuro]

Careful when delving into B12/folate. If you have methylation issues and they get unclogged from the B12/folate, you will rapidly lose potassium. I have myself the worst palpitations of my life when I went too hard into supplementation.

 

[haidut]

are lactate tests helpful? I didn't even know one could get this tested. what should I ask the dr for

Yes, especially if you also test pyruvate and CO2.

 

[tara]

I've decided to continue with thyroid treatment, just because my doctor wants me to.

If you want to tell, what is your doctor recommending for thyroid supplement? T4 only, or a mixture of T4 and T3? Split through the day?
If you are considering high dose niacinamide, I'd recommend starting with a small dose, and increasing gradually to see how it affects you. I've felt as though I benefitted from smallish doses of up to ~100 mg. Larger doses over 500mg a couple of times seemed to cause me trouble quite quickly. Some people are fine with more. I think best to approach slowly to find out, so you don't hit yourself with too strong a reaction in one go. May apply to other supps too, this one was just obvious to me from experience.

 

[energyandstruct]

If you want to tell, what is your doctor recommending for thyroid supplement? T4 only, or a mixture of T4 and T3? Split through the day?
If you are considering high dose niacinamide, I'd recommend starting with a small dose, and increasing gradually to see how it affects you. I've felt as though I benefitted from smallish doses of up to ~100 mg. Larger doses over 500mg a couple of times seemed to cause me trouble quite quickly. Some people are fine with more. I think best to approach slowly to find out, so you don't hit yourself with too strong a reaction in one go. May apply to other supps too, this one was just obvious to me from experience.

she's just having me go by danny roddy's page on thyroid so i'm starting with 1/8 to 1/4 cynoplus once a night and then adding small t3 doses soon

 

[tara]

she's just having me go by danny roddy's page on thyroid so i'm starting with 1/8 to 1/4 cynoplus once a night and then adding small t3 doses soon

As a non-expert, that doesn't seem too extreme to try. Tiny extra T3 - eg 1-2 mcg max doses (maybe up to a few times a day). Might help.
One possible risk I'd see is that if you are having trouble eating adequately, then deficiencies could get worse. If you are lucky, increasing metabolism with a little thyroid supp might help with the digestion.
Good luck.

 

[Ella]

@haidut mentioned albumin; the level of albumin may serve as a novel and simple early biomarker to identify patients at high risk for a complicated clinical course of disease.

What is your diet like? Apologies, if you have already addressed this question elsewhere.

 

[energyandstruct]

@haidut mentioned albumin; the level of albumin may serve as a novel and simple early biomarker to identify patients at high risk for a complicated clinical course of disease.

What is your diet like? Apologies, if you have already addressed this question elsewhere.

I don't have the energy to make my own food, so I dont' really get to choose everything, but I try and get close to a ray peat-inspired diet. I eat a lot of potatoes sometimes with melted cheese, and sometimes eggs, but not recently since digestion has been bad, I've been eating some carrots, rice with coconut oil, vinegar, and salt, juice, milk

 

[energyandstruct]

I will get a better look at my labs and post some of them so I can get more targeted help, thanks

 

[tara]

I don't have the energy to make my own food, so I dont' really get to choose everything, but I try and get close to a ray peat-inspired diet. I eat a lot of potatoes sometimes with melted cheese, and sometimes eggs, but not recently since digestion has been bad, I've been eating some carrots, rice with coconut oil, vinegar, and salt, juice, milk

If this was my diet, I think my energy would go down hill.

 

[energyandstruct]

If this was my diet, I think my energy would go down hill.

I also don't really have appetite either. I don't know if there is really a way to force eating more if the metabolism is so low. I have tried but I don't think there is a way. I think the juice is good at least and milk because it's easier to get liquid calories when digestin this bad

 

[Ella]

As you are male, you may not be getting adequate zinc in the diet. You don't mention any beef, lamb or shellfish.

When talking about viruses, including foods high in zinc, selenium and other crucial minerals in the diet will go a long way in keeping viruses at bay. The operative word here is food. I am sure you have read the value of good quality protein in the diet and sufficient calories on this forum.

@tara is right, I am female and I am quite sure eating such a restrictive diet would make me hypo-metabolic, immune-suppressed and suffering from CFS. In fact I know for sure - been there and the only thing that made CFS disappear was a solid diet of high quality protein. CFS disappeared when I discovered Weston A Price. Peat helped me to understand that I could still enjoy red meat without fearing the big C. It is just a matter of working out the optimal amount for each individual and having gelatin to mitigate the inflammatory amino acids. I was scared off shellfish, like many due to mercury fear mongering. However, introducing them back into the diet helped with liver detox pathways, so I did not react to everything. I could tolerate eating bread without being laid up for 3 days. I still need to keep an eye on zinc levels and found when I was restricting to basically milk, sugar, fruit and potatoes, my zinc levels were not optimal. Shellfish, lamb and beef quickly restores my levels.

Finding the energy can be a real challenge and planning is of the essence here. You must have family or friends that could help you to prepare meals in advance.

 

[energyandstruct]

As you are male, you may not be getting adequate zinc in the diet. You don't mention any beef, lamb or shellfish.

When talking about viruses, including foods high in zinc, selenium and other crucial minerals in the diet will go a long way in keeping viruses at bay. The operative word here is food. I am sure you have read the value of good quality protein in the diet and sufficient calories on this forum.

@tara is right, I am female and I am quite sure eating such a restrictive diet would make me hypo-metabolic, immune-suppressed and suffering from CFS. In fact I know for sure - been there and the only thing that made CFS disappear was a solid diet of high quality protein. CFS disappeared when I discovered Weston A Price. Peat helped me to understand that I could still enjoy red meat without fearing the big C. It is just a matter of working out the optimal amount for each individual and having gelatin to mitigate the inflammatory amino acids. I was scared off shellfish, like many due to mercury fear mongering. However, introducing them back into the diet helped with liver detox pathways, so I did not react to everything. I could tolerate eating bread without being laid up for 3 days. I still need to keep an eye on zinc levels and found when I was restricting to basically milk, sugar, fruit and potatoes, my zinc levels were not optimal. Shellfish, lamb and beef quickly restores my levels.

Finding the energy can be a real challenge and planning is of the essence here. You must have family or friends that could help you to prepare meals in advance.

I love shellfish. I do need to ask for more help from my family with this stuff. I haven't noticed that much change in energy levels ever even when I was eating shellfish, but as I introduce thyroid and try other things to increase metabolism, it can't hurt to have some

 

[Ella]

I also don't really have appetite either.

Good sign that you are zinc deficient. This is what happens in anorexia. Anorexia is really a zinc deficiency.

https://www.researchgate.net/publication/20556278_Zinc_deficiency_and_eating_disorders

 

[zewe]

I also don't really have appetite either. I don't know if there is really a way to force eating more if the metabolism is so low. I have tried but I don't think there is a way. I think the juice is good at least and milk because it's easier to get liquid calories when digestin this bad

This is why I suggested the chlorella; one of the most nutritious foods on the planet. Plus the added benny of natural detox w/out binding up nutrients.

The celtic salt has all the trace minerals found in the human body, unlike white salt, stripped for its mineral content. You. can do the amount of water, I mentioned, if you do the salt. If you need 2 adjust amounts down, go ahead....someone else here also mentioned the need for water.

Six months ago or so, I couldn't cook for myself...I'd be too exhausted to hold myself up. Now I can cook, most days, I live w/ my son who's a young man and not keen on helping me. For years I was curled up in a ball in agonizing pain...everywhere....it would make me vomit. And the brain fog was constant.

Now, I do all shopping, banking, or whatever takes me into the world. I pay attention to my need to rest and drop everything, when I've used up my energy. The d-ribose I mentioned is the simple sugar the body uses only for ATP production......but it still takes days to build up ATP when reserves are used up.....I try 2 never get to that point. However, I ride my bike around the neighborhood, walk dogs and do some gardening...pretty impressive when you consider where I came from.

Like I said, this is a long tedious healing journey. There ain't no magic pill which will work. Center on positive things, practice gratitude for even the small things that come your way....gosh, you have a caretaker....what a blessing!

Nutrition, water/minerals, detox, trigger point therapy and begin to move your body, if only in bed....you can visualize yourself moving which, believe it or not, can have positive results.

 

[HDD]

The problem of refeeding starving people has many features in common with the problem of correcting the liver malfunction and hormone imbalances which follow prolonged malnutrition of a milder sort. The use of the highest quality protein (egg yolk or potato juice, or at least milk or meat) is important, but the supplementation of thyroid containing T 3 is often necessary.

Eclampsia in the Real Organism: A Paradigm of General Distress Applicable in Infants, Adults, Etc.