Doing better

It often happens .. when you start feeling better you visit the forum less. I do. Last September i was in a very bad place, but I have improved a lot (energy wise, cognitive is as bad as ever). I wanted to share because I know, from experience, we are all hanging on to these little bits of hope.
In September I had to lay down during the day, was mostly housebound, could not do any exercise or walk too far. Now I can go out most days, do not even need to go back to bed during the day and am even considering starting a little bit of exercise.

This is what might be responsible for that
- me stopping imunovir ( i think this was the main one)
-starting ldn, i am on 3mg and not going to increase any time soon
-natural (animal based) vitamin -a
-200mg 5-htp
-magnesium succinate (krebs cycle, i have low succinate)
-rhodiola (taking 500 mg daily, immunomodulato)
-host defense mushrooms, (still building up slowly drop by drop)
-low dose sublingual melatonin 300 mcg
- low sublingual pregnanelone 2.5 mg (rationale; many, if you have low (below 100) it is worth to check this out)
-r-la 200mg and carnitine 3 g and zinc 30 mg are also biggies

My next plan is to work on my cognitive issues and neuropathy. I am planning to try piracetam aniracetam, active ribo-phosphate sublingual,, uridine, and switching to an all bifido probiotic. I am researching NMDA receptors, I think they are a biggie in CFS. I think sarcosine could be a great option for us, unfortunately the only supplement that includes it has also aspartame.. so this is on the bottom of my list. I sped a lot of time researching supplements, i feel a bit guilty not sharing all my theories, but oftentimes they dont work out and are quite convoluted ;) . So now what i do is just tell what works for me now, this is ofcourse pesonal, but worth to check out. One by one introduce a supplement, and keep a symptom diary! This helped me so much!

ofcourse I shouldnt be geting cocky yet; ive been there before, only to cruelly have it all taken away.. Ill keep you posted


Is great to hear you are feeling better Leaves , it is always good to hear someone is making progress and getting their life back on track. Is inspiring to see someone reclaiming function. Thank you for sharing. I hope that your recovery continues. Be happy hun ~Sleepy
Good for you leaves!

The most frustrating part about this disease I find the waxing and waning of symptoms. Sometimes I have no idea if I have improved because of some supplements I am taking (or stopped taking) or because it's just how this disease works...

Hoping your good health stays!
Keeping a symptom diary has helped me. It also helps me when I have doctor visits. I kept it for years in narrative form, now I have an Exel spreadsheet.

Leaves.... great you are feeling better:) Take it slow and easy though!

Good to hear you are doing so much better. Hope it lasts a long time! Think I'll go dig out that bottle of rhodiola in the back of the cupboard...
Hey Leaves, This is good news! It seems like you are tolerating the meds that are the best we've got right now! I see that you are taking host defense mushrooms (and building up)--how/why are you doing it so slowly? I started that myself about 6+ weeks ago, but crashed very hard and got 2 different (unusual) strep throat infections and stopped taking it... been wondering if there is a connection--maybe you know something I don't?!
That's so great to hear leaves :) and hopefully it will give others hope too who are currently in a bad patch.

My next plan is to work on my cognitive issues
I suggest if you havent done so already is to try to make sure you have no trace mineral deficiencies or excess heavy metals. These problems which showed up on my hair analyses test is currently cognitively helping me quite a bit.

Im actually able to use my brain again and learn new things again :) .. .. due to trying to fix those issues shown from that test. If I hadnt had that test Id still be not knowing about my molybdenum deficiency (im now on supplements for it) and the high copper level.

being able to use my brain again is awesome :)
Thanks all for your kind wishes :hug::hug::hug:, may we all get better someday..
you are so right, it is really hard to find out whether it is just some random fluctuation of the disease, or some supplement. What I now do is to stop a supplement for a while, and see how i do, if i then indeed do worse, i continue with it. This together with the dairy helps a lot. An excel spreadsheet is even better .. great idea!
I am not completely sure about the pregnanalone and the mushrooms. I am more irritable, am cogntively worse and have a lot of neuropathy (even in my face, with numb lips and involuntary movements of my face) and also more muscle pain. I suspect either of the two has something to do with this. I stopped the pregnanelone for now, to see what happens. in a month or so ill stop the mushrooms to see what happens. The reason im so slow with the mushrooms is that I tend to do worse with immune stimulants. I started off with a higher dose but that made me feel worse, hence the slow increases too. I am not sure if they are having a good effect, hopefully in a month i know more.
about traceminerals; yes! i should get this tested. I take seasalt, to get at least some trace minerals, and I avoid copper. I know that selenium, zinc and molybdenium are all good for me, but not in too high dosages...
yeah i so want my brain back; i shuffle words, cant recognize faces, or dates, or things people tell me, i get lost all the time, i feel like im so demented..

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