Downsides of "Throw everything at the wall" method

[Andryr]

I am experiencing an improvement. Instead of feeling sick&tired 24/7 I feel just tired the way an average tired healthy human feels (but again 24/7). This is a huge step ahead for me anyway. I am able to think better, talk better, feel a lot more for the first time in about 4 years of being sick (CFS-like symptoms, almost mo PEM). Now I am wondering if it is a temporary accident or is it about something I am taking.

The bad thing 2 weeks ago I decided to try everything at once. So currently I am taking daily:
- abilify - 0.5 mg (6 weeks)
- inosine - 3g (2 weeks)
- valacyclovir - 3g (2 weeks)
- piracetam - 2.4g (2 weeks)
- Thorne adrenal cortex - 3 pills (2 weeks)

I was thinking about deducting a supplement/medicine every 2 weeks to see what happens. It is not a perfect strategy (delayed effect?) anyway but better than nothing. Are there any better ways?

 

[Wishful]

Well, the upside is that you didn't spend however long trying each of them individually (some of them might need x months to see an effect). I noticed a significant benefit from a multivitamin/mineral tablet, so I tried some individual vitamins (no or negative effects), then I tried two minerals that I had on hand, and iodine was the winner. If, not knowing that anything in a multivitamin/mineral tablet would help, I had tried all the vitamins in alphabetical order, then the minerals, I probably would have given up partway through.


So, you now know that it's likely (could be a random other factor) that something you took or did in the past 6 weeks had a beneficial effect, so now it's just a matter of trying them individually. Knowing that something worked is a major accomplishment.

+1 for the shotgun approach!

BTW, whether you drop one of those factors at a time, or drop them all and try them individually is up to you. I can't think of why approach is greatly superior.

 

[Inca]

you say you were taking abilify for 6 weeks....did you not get any change in the 4 weeks before you started taking the others?

 

[Mary]

@Andryr - that's a tough one! I generally only try one new thing at a time. Otherwise I won't have a clue what is doing what to me. Though I generally get results, if I'm going to get any results, within a week. I am really glad you're feeling better though!

This is what I would do - stop all the extra supplements (besides the abilify) and after a period of two weeks, re-introduce them one at a time for about two weeks. If something makes you feel better, keep taking it and then add the next one for two weeks, etc.

I've used two of the things you're using - inosine and an adrenal extract, and both made me feel better, though the inosine benefit was temporary, maybe a month or so, I can't remember. The adrenal glandular extract helped me for a longer period but I no longer need it. But it was very important for me at one time, several years ago, and made a big difference in my energy levels and how I felt. I used to feel a lot sicker and weaker, and my improvement is generally due to several different vitamins and supplements (B1, phosphorous, B6, folate, B12, potassium, BCAAs are the chief ones though I take a lot more)

 

[Andryr]

did you not get any change in the 4 weeks before you started taking the others?

No. I should have mentioned I started Abilify 0.25 for 3 weeks and then raised it to 0.5

 

[Judee]

I would say if it's working for you, not to change anything for now.

Mutaflor was helping me but I rotated off of it per someone's suggestion and then it never worked for me again.

 

[Wishful]

Don't get too discouraged if the benefits fade away. That's very common with ME treatments: they work great for a few days or maybe a few weeks or months, but then stop working and never work again. then it's back to "What do I try next?"

Mutaflor was helping me but I rotated off of it per someone's suggestion and then it never worked for me again.

That's another aspect of ME treatments: we never know why something stopped working. Did dropping Mutaflor cause it to stop working, or was it going to stop working even if Judee had continued taking it? There are some decisions we can be fairly sure in retrospect were mistakes (seriously overexerting resulting in a crash), but for many others, we can't prove they were wrong or not wrong, so there's no point in obsessing over regretting past decisions.

When there was a big push for Covid vaccinations, there was no reliable data to base a decision on whether vaccinating was riskier than not vaccinating and getting the infection, so it was basically impossible to make a right or wrong decision based on the information at the time.

You might drop one of those treatments, lose the benefits, and not regain them after renewing the treatment, but you'll likely never know whether dropping it was responsible for the change. So, no right or wrong decisions; just do what you feel comfortable doing.