In So Much Pain And Scared, Getting Worse Rapidly

[Terma]

My thoughts are a little disjointed here, but you have to keep in mind some ME/CFS patients test low on cortisol and aspirin might push it even further (while only partially substituting for cortisol's powerful immune suppression effect).

 

[lampofred]

i usually take around 600 mg daily, with some k... haven't had bruising yet, how much can u take without bruising, if u take it with k? seems tricky.. i get IVs a lot tho so the no bruising so far seems like good sign, i would've seen it

I've taken up to almost 6 grams in one sitting with no side effects. I mix it in hot water to minimize stomach irritation.

 

[ilikecats]

@debored13 bag breathing would be a good idea I think. Its simple but the results can be profound, especially if you do it off and on for a long period of time. Doing something like getting your vitamin D into range should have profound systemic effects on the body. Do you not take any vitamin D? 20,000-25,000 topically would be a good dose. Id recomend getting multiple high wattage (150-200w) 130v clear light bulbs and putting them throughout your room. Red light devices are a poor substitute in my opinion and some can be problematic in my experience. In my own experience its very very difficult to get things moving in the right direction when you're in poor health. it requires approaching things from every possible angle simultaneously and relentlessly. But thats my experience and it doesn't seem to be necessarily common. I think you can to a better place but it is very difficult.

 

[Terma]

In those high doses (at least above 1g? or was it 4g? I forget) the cellular effects of Aspirin on AMPK are actually comparable though not equal to ALA's. And even to CoQ10's. But it has all these additional anti-inflammatory and fuel selection effects, and its known negatives on gut and auditory, so I've wondered if high-dose ALA is not actually safer than high-dose Aspirin in some respects. You can always try both, I don't know the interactions.

 

[energyandstruct]

@debored13 bag breathing would be a good idea I think. Its simple but the results can be profound, especially if you do it off and on for a long period of. Doing something like getting your vitamin D into range should have profound systemic effects on the body. Do you not take any vitamin D? 20,000-25,000 topically would be a good dose. Id recomend getting multiple high wattage (150-200w) 130v clear light bulbs and putting them throughout your room. Red light devices are a poor substitute in my opinion and some can be problematic in my experience. In my own experience its very very difficult to get things moving in the right direction when you're in poor health. it requires approaching things from every possible angle simultaneously and relentlessly. But thats my experience and it doesn't seem to be necessarily common. I think you can to a better place but it is very difficult.

i was only takin 2000 of d... maybe this is problem. i have heard it can be implicated in pain and fatigue



thanks for all the responses guys

tired now but i'm going to have one of my caretakers read thred and maybe try some things tomorrow

 

[ilikecats]

@debored13 i assume you were taking 2000iu orally? I recommended the very high dosages that I did for vitamin d because I was talking about taking it topically (the absorption rate is about 20 percent) if you aren’t having problems taking it orally I think that’s an ok route of administration too. But I think a dose of at least 4000iu (orally) would be a better dosage to get your levels up. Wish you the best of luck. I’d say light>everything else imo.

 

[Terma]

Another warning cause I've been down that road too, oral Vit D is nowhere near topical UVB in promoting blood Vit D levels, and both take minimum several weeks to several months to notice a difference. The fastest difference from oral Vit D is taking 10,000-20,000IU/day for awhile, it's just that weak. And again it's a single thing and for ME/CFS patients make a wide range of difference from negative to neutral to position, so don't put your faith in one thing, that's just inviting more disappointment.

 

[Constatine]

weed has made my fatigue/mental state worse often, i may try cbd again tho. trying short term things to cope is good idea mybe when this bad. instead of biting down on stick or swearing lol. maybe kratom. kratom always ***** up my sleep and hormones since being sick but short term pain relief from it is heavenly

Stay away from weed. Its terrible for CFS and lactic acid problems in general.

have tried super high dose thiamine which was only time i had effects from it. at the time I was not as bad shape and it gave energy but also caused some heart palps (maybe increased metabolism but had other nutrient deficiency?) will try thiamine at more medium doses, this is good thought thanks friend

Strange, I get the same reaction to it. Also breathing problems with it.

Pills are iffy. They can often make gut health worse due to fillers. They are also typically low in quality.
A goal in CFS should be to modulate the gut microbiome. SIBO, high D-lactic acid producing bacteria count, fungal infections, and enhanced bacteria translocation are all associated with CFS. A diet very high in coconut oil and certain spices can be very effective for this. Cinnamon, oregano, clove, turmeric (sometimes too anti-inflammatory if you have an infection), and cumin are common spices that have powerful anti-micriobial effects and have been shown to reduce biofilm formation, quorum sensing (bacteria cross talk that allows it to build tolerance to antibiotic substances), kill pathogenic bacteria and fungi directly, and overall modulate the gut microbiome. Interestingly caffeine can do all these things as well.
Try to stay away from acidic foods (citrus mostly) or super alkaline foods/drink (alkaline water is the only thing I can think of that is that alkaline).
Note that if you do indeed have gut issues anti-microbial substances can temporarily make you feel worse as endotoxin is rapidly released upon bacteria-yeast death.

 

[Terma]

To clarify weed has been surprisingly fantastic for some patients:
Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)
Has anyone tried medical grade marijuana for their ME/CFS symptoms?
There's an even better thread somewhere, but **** it they ****88 up the search somehow and the whole forum's gone to ***t.

The problem is sources both commercialized recreational and some illegal growers are pushing high THC and virtually zero CBD strains. So much that the decriminalization has worsened the overall health profile of cannabis to a degree. That said, some outliers even benefit from pure THC OR less-researched compounds (e.g. terpenes) in the weed:
High THC Cannabis - Sleep inducer and MCS Buster (!) [fixed]

Nonetheless n=1 is your best friend here.

 

[sunraiser]

You can heal for sure.

It doesn't have to be complex, you don't need a strict protocol. A lot of the suggestions here are well meaning but they're completely arbitrary and cannot possibly be considered without your full in depth context.

The fact you've crashed from forced exercise means you're most likely in a more depleted state and RP standard diet might be unwise.

Which foods seem appealing? Lots of fats with a little starch and protein or something lighter like fruit or rice?

In that depleted state your carb tolerance is often lower. Fats will also stimulate bile production which can help your digestion and immune system. Don't be afraid of them at least.

Remember that YOU are the authority on you and that won't ever change. It can be tempting to cede to a perceived authority but only you know your context and feeling.

Wisdom filled person X might tell you that fruits are the best food but your body might be telling you they're not very appealing. Listen to your body - this might take some time to relearn though.

It can and will get better. Stay away from forums for a while. Your mind will settle.

Immune challenges can present vitamin A and zinc deficiencies (they're used in each others absorption) so if egg yolks and steak seem appealing just go for it!

 

[Dave Clark]

You may want to try a PEMF device, they could help with inflammation, and stimualte circulation and healing. The MicroPulse or the Almag would be a good choice in a low cost range. Check out Dr. Pawluk's website for more info.

 

[energyandstruct]

had a ton of gut pain, upper gut pain specifically, like stomach, last night. I was going to start thyroid today but if I cant get food down it seems unadvisable. took a bunch of tums and drank milk, which helped only temporarily. It mayhave been from aspirin?

 

[Hans]

Have you tried magnesium before?

 

[energyandstruct]

Have you tried magnesium before?

yeah
hard to tell if it helped tbh. i know it is general tonic

 

[haidut]

had a ton of gut pain, upper gut pain specifically, like stomach, last night. I was going to start thyroid today but if I cant get food down it seems unadvisable. took a bunch of tums and drank milk, which helped only temporarily. It mayhave been from aspirin?

Lactic acid can cause many of the symptoms you have, especially the fatigue, burning, etc. In addition to thiamine, even low dose methylene blue (1mg-5mg) can often provide dramatic relief from high lactic acid. Higher doses niacinamide can also help, especially in combination with the thiamine, but MB is probably safer and easier on digestion than high doses thiamine/niacinamide.
Niacinamide Causes Dramatic Increase In Nad And Fall In Lactate

 

[energyandstruct]

Lactic acid can cause many of the symptoms you have, especially the fatigue, burning, etc. In addition to thiamine, even low dose methylene blue (1mg-5mg) can often provide dramatic relief from high lactic acid. Higher doses niacinamide can also help, especially in combination with the thiamine, but MB is probably safer and easier on digestion than high doses thiamine/niacinamide.
Niacinamide Causes Dramatic Increase In Nad And Fall In Lactate

I have methylene blue and will try it. Never really got dramatic results from niacinamide. I did try .5 mg methylene blue once, with no effect besides slight headache.

Do you think its inadvisable to try thyroid in these circumstances? My doctor finally prescribed some compounded at correct doses, but if I can't really digest much I wonder if it would just make things worse.

 

[energyandstruct]

You can heal for sure.

It doesn't have to be complex, you don't need a strict protocol. A lot of the suggestions here are well meaning but they're completely arbitrary and cannot possibly be considered without your full in depth context.

The fact you've crashed from forced exercise means you're most likely in a more depleted state and RP standard diet might be unwise.

Which foods seem appealing? Lots of fats with a little starch and protein or something lighter like fruit or rice?

In that depleted state your carb tolerance is often lower. Fats will also stimulate bile production which can help your digestion and immune system. Don't be afraid of them at least.

Remember that YOU are the authority on you and that won't ever change. It can be tempting to cede to a perceived authority but only you know your context and feeling.

Wisdom filled person X might tell you that fruits are the best food but your body might be telling you they're not very appealing. Listen to your body - this might take some time to relearn though.

It can and will get better. Stay away from forums for a while. Your mind will settle.

Immune challenges can present vitamin A and zinc deficiencies (they're used in each others absorption) so if egg yolks and steak seem appealing just go for it!

The only foods that really seem appealing are coffee with milk and rice with salt and perhaps a little coconut oil, but not much. I actually had rice with raita and salt and even tho I tend to avoid yogurt b/c of lactate it was nice, raita is diluted at least

 

[Terma]

Didn't think to mention it, but I agree with haidut MB is worth a shot for a short time, since it's damn cheap. I've taken up to 5,000mcg/day for a couple days with no issues, but after a few days feel off and becomes negative. I imagined it would be comparable to CoQ10, which it is a little I guess, but strangely nobody on ME/CFS forums brings it up, not even that guy who's tried every supplement and pharmaceutical drug on the planet (Hip). I don't know how helpful it really is because I was past my worst when I first tried. Niacinamide people only use to sleep, basically. It's not so benign for everyone.

The combination of poor digestion and low T3 is the perfect job for high dose TUDCA. No thyroid ever worked properly on me, though you have to try it at least twice.

How long have you been on Aspirin? I wouldn't immediately suspect that unless it started slowly and became chronic. Is it a burning type pain, like reflux? If not, maybe get gallbladder checked. Or even regardless, worth checking anyway, pretty common issue for people on diet forums.

 

[fradon]

try pure stevia...you probalby still have LYME. PURE STEVIA is said to eliminate LYME but it is hard to find in the states you would have to get it from BRAZIL OR COLUMBIA or somewhere they grow it.

do some research on the subject..

 

[energyandstruct]

I took a fourth of a tablet of cynoplus tonight, with juice. No effect so far. Is it ok to take methylene blue on top of this?