doing better, wondering why...

[bad1080]

i been doing better for about two weeks now. this has been the first time where i have consecutive days doing better in a long time and i am wondering why. i still can't trust it... even though i have no PEM after activities, i still feel weak sometimes but not this complete exhaustion nor brain fog.

i changed a couple of things so i can't pinpoint my improvement to one single thing but here is a list of things i think contributed (in no particular order):

- i changed my diet. it was poor before, a lot of ready-to-eat meals and frozen pizzas. every now and then i had the energy to cook something from scratch and eat it for 4-5 days. but it felt like my list of tolerated ingredients was shrinking and shrinking, couldn't tolerate noodles anymore (not even spelt ones), neither potatoes, it felt like most of my diet was making me, well maybe not worse but kept me from getting better. since the change i noticed the pain in my hip/thigh joint vanished...

what did i change it to? well it is still not great i'd say but it is a lot better, especially compared to where i came from. it's instant-ramen, the ones you have to cook for 4-5mins and they are done. but i add a lot of fresh stuff to it like broccoli or cauliflower, cilantro, bell peppers, bok choy, eggs, peanuts or chickpeas, fermented tofu, dark sesame oil, sometimes kimchi and whatever else i can think of, mainly vegetarian. from start to finish i can whip one up in about 15-20mins, so it's not too bad.

- i started taking lithium orotate (5mg of >elemental< lithium). i noticed an improvement right away but it needs some time to build up a steady level. i started it about 5 weeks ago, so i should be at the point where a level is established now.
thread: https://forums.phoenixrising.me/threads/lithium.92650/

- i am at a point with my last helminth dose (3NA) where i usually feel better (2-3 weeks after a inoculation). but the improvement from my last couple of doses had diminished a lot, been doing it for almost 2 years now.
thread: https://forums.phoenixrising.me/thr...only-thing-to-make-a-difference-so-far.92418/

- i am steadily upping my LDN dose by 0.05mg per week (at 0.65mg per day now) after a long phase (almost a year) where increasing the dose was not possible for me because of side-effects. i started at 0.5mg but that was too much for me, lowered it to 0.25mg and was able to tolerate it.
thread: https://forums.phoenixrising.me/threads/ldn-less-side-effects-from-higher-dose.93424/

- i started taking a new and probably better multivitamin i got recommended here. it is called two-per-day multivitamin but i take only one per day. so it is possible i was missing some co-factors for something else... i have been taking it for about a month now.

- i took a one time dose of 0.5mg tavor (lorazepam) before a dentist visit. i think this was able to "show my brain it is possible to be calm" idk how else to describe it, it lasted for about 36h... this was about a month ago.
thread: https://forums.phoenixrising.me/threads/benzodiazepines-helpful-but-no-treatment-poll.93479/

- i started EMDR work with my therapist but so far we did only one session and this was after i had already improved. usually a double session wipes me out for the day and the next couple, especially with the travel to the therapist and back (we did a lot of online sessions before). but this time i was fine?!? i was able to make something to eat afterwards and i did take my daily nap but i wasn't wiped out, like a wet sponge cloth. that EMDR session released a lot of pent up anger from my childhood.

i still have ups and downs but i feel like i am able to cope with some things now and sometimes i even feel like i want/have to move my body (took a short walk today). i still have a hard time to believe or even say it to not jinx myself but this is me cautiously spreading some hope. never stop trying stuff, you never know what might start working for you!

i post this now because i almost lost everything a second time before posting it... gonna add to it whenever i think of something.

edit:
- i started taking inositol at night for my sleep. i am still experimenting with the dose, i tried 500mg twice, one before bed and one when i wake up in the middle of the night and currently i take 1000mg before bed. it helps me falling asleep and my sleep quality. i been doing this for about a month now.

edit2:
- another thing i forgot i got a crown for a deep cavity in a molar about a month ago (that's when i took the tavor)

 

[Mary]

@bad1080 - I'm really glad to hear you're doing better! I know you've been having a rough time for awhile.

Do you have any idea why you don't have PEM after activities? Or is this something you've just never had?

 

[Viala]

Story of my ME, it's good to see that it's not only me. Every time I get better or worse I can give at least a few reasons why it happened and never really know for sure what it was. It takes time to find out and sometimes I just don't know. It's always a deciphering mission.

 

[linusbert]

awesome!!

but what of the many things did bring change?
i guess it might be the food,
what did you eat instead of pizza and potatoes? what do you eat now?

 

[bad1080]

@bad1080 - I'm really glad to hear you're doing better! I know you've been having a rough time for awhile.

Do you have any idea why you don't have PEM after activities? Or is this something you've just never had?

thank you! i had PEM before, really bad in fact, to the point i felt like i was 80 years old (i am in my 40's) and barely able to think. the fact i don't anymore is as much of a mystery to me as it is to you, it must be a combination of the things i listed above.

what do you eat now?

i wrote it up there in more detail but it's instant-ramen, mainly vegetarian. it was the earliest change i made (in this cluster) but it's probably also the longest to take effect, so it's hard to say how much it contributed on it's own (or impossible even). i also need less PERT (Pancreatic Enzyme Replacement Therapy) now so i guess the inflammation in my pancreas has also gone down. (got my pancreas diagnosed twice but they couldn't find a cause. it's not autoimmune and it's not cancer) it's not a lot less (50k instead of 65k per meal) but any improvement is a good sign i guess.

Story of my ME, it's good to see that it's not only me. Every time I get better or worse I can give at least a few reasons why it happened and never really know for sure what it was. It takes time to find out and sometimes I just don't know. It's always a deciphering mission.

it was always a mystery to me when i had a good day before (i always called it spontaneous improvement but it was never more than a day) but this time i can draw some connections for the first time (helminthic therapy aside) and it seems to be sustained *fingers crossed.

 

[Wishful]

the fact i don't anymore is as much of a mystery to me as it is to you,

Is that 100% no PEM, or just reduced frequency or raised threshold. Some people claim that i don't have ME because I don't have PEM anymore, so it would be nice to have other examples of curing PEM while still having other ME symptoms.

Yes, ME can have mysterious ups and downs. Sometimes we can figure out the cause, such as a certain food, but other times it remains a mystery. Our digestive system is complicated, so it's hard to identify what caused a change.

FWIW, rice noodles cook a lot faster than wheat-based noodles, so more convenient for quick meals. The common transparent noodles (rice, bean, sweet potato) probably aren't any healthier than ramen, but in another section of your grocery, you might find brown rice pasta, which might be somewhat healthier. While the clear noodles might look similar, and are just processed starch, it is possible for PWME to tolerate one type while being intolerant of another, adding to that "Why do I feel better/worse?" mystery.

 

[bad1080]

Is that 100% no PEM, or just reduced frequency or raised threshold.

i feel like that is too early to tell but the double session therapy is something that 100% would've triggered it before.

edit: oh and i had to sneeze and cough a lot the other day which is usually a precursor to PEM for me but nothing came of it (took an extra vit.C).

 

[Wishful]

i feel like that is too early to tell

Please let us know if you remain PEM-free after a month or more. I think it's important to know that some people (more than just me) can cure their PEM without curing the overall ME. If there are enough of us, they'll have to change the criteria. It also invalidates some theories, so researchers can more on to new ones.

 

[NameHere]

Very helpful post. I like to see what other people are trying and what worked/didn't work. My vote is on the lithium and improved diet.

 

[linusbert]

interesting thing is, when i get better / or worse ... i also did a plethora of things never being able to isolate what was causing the effect.

 

[bad1080]

interesting thing is, when i get better / or worse ... i also did a plethora of things never being able to isolate what was causing the effect.

yeah with all the supplements i tried i always thought "something worked" when i did better but it never lasted more than a day. so in hindsight i'd say it had nothing to do with the supplements, it was just spontaneous.
this time it's different and i strongly suspect one of the things above or a combination of them to be responsible for the improvement.

 

[pamojja]

yeah with all the supplements i tried i always thought "something worked" when i did better but it never lasted more than a day.

For me, it was different, I never expected 1-day improvements, with my failing heart, lung, liver, kidneys, spleen, androgens, thyroid, glucose metabolism, etc.

I knew this damage had been done during decades, practically my whole life. And indeed thought the chance for repair, even a fraction of it in further decades, rather unlikely.

So I never expected quick results, though in retrospect some did occur. But I really don't immediately 'feel' any supplements. Except a few disturbing sleep, better taken in the morning.

Nothing more to lose, I persisted with my lifestyle changes and comprehensive supplementation. I did however track improvement or worsening of interventions with a many as possible lab-markers. But felt not much otherwise.

a combination of them to be responsible for the improvement.

The remission of PAD took 7 years, PEMs a whole 10 years to subside. With all major body systems failing, it takes time, and addressing the whole of it, which 1 supplement simply can't (except in rare case, with much less involved).

i also did a plethora of things never being able to isolate what was causing the effect.

The chronic diseases in my case were caused by a plethora of things, how could they ever resolve with an isolated agent? I'm just over-joyous that they did.

In such a case patience and persistence is key. Not felt, but improving blood-markers kept me on track for so many years.

 

[pamojja]

how could they ever resolve with an isolated agent?

However, the rare surprising one agent against one 1 or 2 ills was preformed vitamin A, retinol. Which I increased very carefully, due to alleged toxicity. Above 20.000 IU it ceased infrequent psoriasis outbreaks. And retinal migraines, which I got assured when decreasing below 10.000 IU again. Retinal migraines returned, just do cease with higher dose again.

CoQ10 ceased angina like chest pains, once above 160 mg/d. Half of that with Ubiquinol. Back when decreasing intake again.

And my favorite, ascorbic acid. Gradually improved my walking-disability once above 6 g/d (Linus Pauling recommended as minimum for a therapeutic dose). Also, a for years persistent skin rush on my back disappeared. Works as good as any antihistamine in the rhinitis season for me. A cystitis of the bladder disappeared. And despite prediabetic blood-glucose readings, HbA1c stayed relatively low.

Sun-burns ceased (without protection), even though flying at my palest in winter to a tropical beach, and sun-bathing 3-4 hours/d from the start. But here I consider the whole combination of antioxidants, for this striking effect.

Morning erections a thing of the past, simply 3g/d arginine restored it again.

These are my few anecdotes, where 1 supplement showed clear, direct and at times repeated effects. Though still not within days.

Worthy to mention, improving from a 30 years lasting low-fat vegetarian diet, to daily eggs, weekly fish, monthly meat and increasing fat to 70% of caloric intake, was enough to improve my lipids. With diet as with supplements we are all different though, and better do lab-testing.

 

[Wishful]

yeah with all the supplements i tried i always thought "something worked" when i did better but it never lasted more than a day. so in hindsight i'd say it had nothing to do with the supplements, it was just spontaneous.

I can offer one counterexample. I took a multivitaminmineral tablet, and the next day my ME switched completely off. It was fully back the next day. I can't recall whether the multivitamin worked a second time, but I then tried all the vitamins separately ... with no benefit. Then I started on minerals, using what I had available at home, and iodine had the same result: switching my ME off for a day, and only working maybe twice before not working again.

Years later, I was pondering why iodine worked while T4 or T3 didn't, and bought some T2, which again gave temporary remission .. just for the first couple of times.

So, it is possible for a supplement to provide a significant benefit, but since this is ME, it may only work for the first dose or two. It certainly makes finding a reliable treatment more difficult when we keep encountering "works only once or twice" ones.

 

[bad1080]

while T4 or T3 didn't, and bought some T2

what's that?

 

[NameHere]

These are my few anecdotes, where 1 supplement showed clear, direct and at times repeated effects. Though still not within days.

I looked at your health blog where you documented all the supplements you are taking, all the vitamins and herbs, etc. You mentioned labs showed low results; did you have blood workup showing lots of low vitamins? If so, did your doc ever test you for Celiac? With Celiac, you can have nutritional deficiencies because the villi in your small intestine is damaged and cannot absorb nutrients.

 

[stellaluna]

Do you have GI symptoms? If so, have they changed in that timespan? I recently discovered that I do not tolerate saturated fats well and limiting them improves my GI symptoms as well as my ME symptoms. Frozen pizzas to instant ramen sounds like it could be a considerable decrease in saturated fat

 

[bad1080]

Do you have GI symptoms? If so, have they changed in that timespan? I recently discovered that I do not tolerate saturated fats well and limiting them improves my GI symptoms as well as my ME symptoms. Frozen pizzas to instant ramen sounds like it could be a considerable decrease in saturated fat

i have plenty of GI symptoms, yes. they got better after i started the PERT but i still have a lot of diarrhea (3-4 times a day). every now and then i get a formed stool as first BM but then more diarrhea... (sorry for TMI)

i usually react immediately to foods, like within seconds, when i don't tolerate something. but now everything is fine until i get up in the morning, sometimes i wake up with a stomachache already but even if i don't i usually develop one before breakfast (at this point i haven't eaten for ~12h). my BM's are usually very urgent from 0 to 100 so i have to run to the toilet to make it.

i got all the cameras shoved in all the openings and as per usual the doctors can't find anything wrong with me (pancreas aside), so i chalk it up to a messed up nervous system.

 

[pamojja]

I looked at your health blog where you documented all the supplements you are taking, all the vitamins and herbs, etc. You mentioned labs showed low results; did you have blood workup showing lots of low vitamins? If so, did your doc ever test you for Celiac?

Lab tests need a bid more background knowledge, than just too low or too high from normal range. Normal range is in most cases just the middle calculated result of 95% of all tests taken by a lab. The upper and lower 2.5% are considered outside of normal. Some, like me, also consider 'optimal' ranges for lab tests. In part out of literature with correlations to lowest mortality, or from clinical practice of various functional medicine practitioners.

Some vitamins and minerals showed low, some high. However, for example many B-vitamins can be too high in serum because of accumulation of an unmetabolized form, like for example B6. Or B12, where Methylmalonic acid or Holo-trancobalamine are more accurate markers. In those cases, usual lab tests are useless. At best, a serum B12 test can show deficiency. As soon as supplementing, too high is almost always meaningless.

The Orthemolecular model of medicine (therapeutic high doses of vitamin, minerals and amino acids) works on the premise, that normal RDA levels of vitamin intake might suffice to prevent the worst deficiency diseases in most of the population, but are far from enough to unravel therapeutic effects. As with vitamin C, where only with above 6 g/d therapeutic effects started.

So for therapeutic effects, one often has to dose far above normal range. With precautions, like for example vitamin A. Even though vitamin A normal range in labs can't be relied on, since most usually don't get enough by no more eating offal, as our ancestors. Incidentally, I once overshoot with vitamin D3 serum level (135 ng/ml; 30-70 normal range), due to additional and exceptional much sun-exposure. After I experienced my main remission from a walking disability.

I had been tested for celiac, but that was long after going grain-free due to prediabetes.

 

[pamojja]

while T4 or T3 didn't, and bought some T2

what's that?

Thyroid hormones.